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she has a name...

Hi my name is Kim and I am a recovering bigot and ignorant sole…once was the day I agreed abortion was a woman choice…sole choice…once was ...

Monday, December 28, 2009

Aquariums, Doctors, and Dinosaurs…

We just had a quick trip to Denver…the aquarium was wonderful and Maddie and Max loved it…Max loves touching the (sea creatures) sting rays…Maddie loved all the people and all the action in the big tanks…the doctors visit was par for the course of this journey with Maddox…her hole in the heart was miss measured and it is bigger then the doctors thought…and now it is a wait and see game…the doctor said it was in a great place to do it arthroscopy so this is good news…I guess! Her surgeon for her esophagus is concerned of stricture so it is a wait and see for the next week…if she stops throwing up…we will not have to have her esophagus dilated at this time…good thoughts! Otherwise we go through this all again in a couple of months! The museum was GREAT we saw dinosaurs and a Imax movie “sea monsters” it ROCKED…Maddie was trying to eat the scenes in the movie…it was very nice to see her enjoy the things Max and Daddy really love…more good times to come in the new year!

Thursday, December 24, 2009

Dear Santa...

all I want for Christmas is peace in me…I know this is selfish…but that is what I want…I want to accept that I have a Down Syndrome child…who I adore and secretly want to be “normal”…I want to go to sleep at night knowing that it is ok when I wake up in the morning…and she is still a child with Down Syndrome…I want to sit in silence and be ok with the thoughts racing through my head…I want to not freak out when Maddie throws up or has a routine doctors appointment…I want to be ok that she may live in a residential home or with me forever…I need to accept that she may never be independent…I want to be tolerant that people will say stupid things and roll there eyes at me…I need to be understanding that very few people understand my world…Santa I am not asking for much so please PLEASE let Maddox drive someday!

Friday, December 18, 2009

to be 4...

To be a 4 year old…can you imagine being able to scream on impact…turn off your ears to suit you…make up stories…have imaginary friends...to poop in a diaper and pee on the lawn…to drink chocolate milk constantly and make it somehow ok to eat chicken nuggets for breakfast, lunch and dinner…to run from the time your feet hit the ground and play as hard as you can till you fall over for nap…which you hate because you are so big! but not big enough to take off own shoes, put on a coat, or find anything you happen to be looking for…for having to dump everything out of a box…throw everything around and then not be able to pick it up…and yes I could probably change all of these behaviors an then he would not be Maximus…

Thursday, December 17, 2009

Bounce Baby Bounce...

Maddox LOVES the johnny jumper! She loves to bounce bounce bounce…then she falls asleep…I am not horrible and leave her in it forever…but with in minutes she goes night night…unless one of the kiddos is playing with her…she is sooo funny! She has been sticking her head way up in the air and doing this lip quiver...her arms are straight and she looks just like a sweet baby seal! She also has begun scooting on her chest and belly with a hitching motion…it is awesome! Yes I am bragging! This week has been HUGE for her milestone…I think I am most excited about her FINALLY opening her mouth to take a bite of food! yes she is still covering me in food with her raspberries…but I think that is her second language…all we need now is a helmet so she does not get hurt!

Tuesday, December 15, 2009

Just a baby...

“Just” a baby! that is what I am told repeatedly from people…and I also try to convince myself of this concept…except babies are only babies for so long…then they become kids, teens and then adults…is Maddie going to be referred to as “just” an adult…or will she be referred to as “just” a person with Down Syndrome…is she going to go through life continually amazing people…I hope so…my point on this concept is that yes…she is “just” a baby that has Downs Syndrome and she is considered to be Mentally Deficient…she will always have the sigma no matter her abilities…this scares me…she is “just” a baby with higher risk factors of EA, TEF, ASD, leukemia, celiac, Alzheimer, and she will be uninsurable if we lose our coverage…all because of Down Syndrome…oh yeah! I have people coming into my house on a weekly basis to help with Maddie…and she has more specialists that look out for her then I can count….mind you this is GREAT but not “my normal”…and still she is “just” a baby…people tell me it is because we have expectations for Maddie…is the reason she is doing so great! the thing is I think we all have expectations for our children…but it only can take a person so far…then they become who they are and it is up to them to be the person they want to be…Maddie better be comfortable with all the illusions of Down Syndrome…because that is the burden that is placed on “just” a baby!

Sunday, December 13, 2009

getting over myself...

Babies…my view on them is very different from going through the Maddox! I used to be so excited and loved when people were thinking about getting pregnant and people being pregnant…and just loving the whole process…that has changed…I just do not think that people have perfect babies now…I even think of people who have miscarriages differently…I feel for them I feel for the death of there baby...it is not so fleeting to me…that it was just the body rejecting the fetus…I now view that fetus as a baby regardless of the week of gestation the mother is in…I am also soured in the whole celebration of the babies arrival…what prompted this??? An invite to a baby shower…I have to admit I am not a fan of them…I used to love going shopping for the mom and the baby…now not so much...I am not sure if it is jealousy…or if it is my bitterness of my own pregnancy…I loved being pregnant with Maximus…I hated being pregnant with Maddox…so I got tied! While I was pregnant with Maddox I attended a baby shower for a friend of mine...it was one of the hardest things I did while I was pregnant…I did not have a baby shower I would not allow it…at that time we did not know if Maddox would survive and I was not going to come home to a room full of pink baby things and no baby…when we did get out of the hospital and home I attended another baby shower for a friend and it was still equally hard…I was so mad and angry that I was not as happy as those two friends…one of the friends did the prenatal testing for Down Syndrome and her test came back a false positive…her baby even had markers for Down Syndrome…and Maddox had nothing…until the no bubble ultra sound…now I have another baby shower that I should attend…and I can have a million reason why I should not go…and one reason why I should…because I will feel guilty and I should get over myself…I have five days to decide!

Friday, December 11, 2009

Bad Panic...

As I have blogged awhile…I feel I have gotten to know some people in the same boat as me…and of course I know some friends and family read this….most subjects I do not speak about face to face…and with that I sometimes think I should sensor my thoughts…that I put into this blog…then Chad reminds me this is my therapy to get through this time in my life…a time not many can understand…as me and Maximus were on the way to the store…I was going through a intersection and I began to panic…I seem to remember not so good parts of my pregnancy (my insecurities) with Maddie at random times of day…when I was pregnant with Maddie I was going in for the routine diabetes test that all pregnant women go through…I kept putting it off because by this time every test I taken had come back positive for what ever they were looking for…I was by this time sick of everything and my pregnancy was becoming to much…because I understood that the baby with Down Syndrome would eventually be my reality…sitting in the intersection I remember not wanting to move out of the way for traffic I wanted to get hit by a car…I wanted to stop the crazy that was going on…I new Maximus was home safe and Chad was at work safe and that they would be fine and taken care of…I remember thinking this was my way out of the unknown I was about to endure…I eventually got to the lab to take the test and I was fine…days later it was the first test that came back not positive…it was a big deal for me…baby steps! Today if Maddie cries… I cry…I cannot imagine hurting her…or her not being here…I CAN believe I had those thoughts and urges and I am glad I had the strength to jump into this journey with Maddie…now to keep forgettable memories at bay…

Thursday, December 10, 2009

Loves...

Watching and being a part of your children growing…is simply put…amazing…I really enjoy watching Maximus and Maddox interact with each other…Max has the ability to make Maddox laugh so hard already at 6 month of age…if she did not have a diaper on she would probably pee herself…it is sooo funny…all he has to do is talk with her and laugh to get her going…she loves to watch him…she loves to touch him…and she always rolls to find him…she has begun to whine when he is not around…very sweet…and to think I was worried that he would not except her…just because he would have to share me and Chad…but since the first day he met her in the hospital…he has loved her and taken care of her…he thinks she is perfect and beautiful…he does not see her Down Syndrome and does not care about it…I wonder if he ever will…right now…he loves being her big brother…

Wednesday, December 9, 2009

The "N" word...

I cannot seem to make up my mind! I want so much for Maddie to be “normal” yet yesterday at her IEP meeting I got frustrated that they were referring to her as “normal” or “typical”…yet the words that followed are the ones that piss me off…”for a Downs Syndrome child”…should I not be relieved that FINALLY Maddie is “normal”! I hate that there are still no answers to how she will develop…is she for sure high functioning…and what does high functioning mean…does it matter…it ALWAYS comes back to will she drive?? I am still hung up on that! I really feel if she can drive she can do anything…she can go to college, get a job and be independent…I am not sure she would like me to have to drive her on her first date...yes! yes! I know she can do these thing with out driving…but for me driving was a right of passage…and I want that for her…I get so sad sometimes…especially after an IEP meeting…that this is our “normal” a community of people helping to raise our daughter…that we cannot do this on our own…that we need outside help to make the best life for our Maddie…I just hate when I get “well she is amazing”…she is… but she is not my “normal”…

Sunday, December 6, 2009

One more thing...

Funny how when you get what you want…there is a something you have give up! Maximus is now not wearing a diaper during the night…but he also wakes up at 5:30 am to pee and does not go back to bed! I am so impressed with him…he did this all on his own…he said no diaper and wakes himself up and goes pee…no accidents yet and it has been a couple of weeks! He said the other day if he finishes his soup he will be big enough to poop in the potty! But he measured himself and he said he was still not quite there! I guess I will take what I can get…

The other day I noticed Maddox had a whitish tongue…then on Friday she had some blood in her mouth…and she was not taking a bottle for any length of time and she was so hungry…when she would eat…she would eat so fast she would throw up…of course I am thinking stricture…Chad took her in for her H1N1 vaccination and the nurse commented on the white tongue…and it looked like thrush…but she had just had a bottle…then for dinner she kept wanting a cup to drink and not taking a bottle again…then yesterday I tried wiping the white off the tongue and it did not come off…I knew then it was thrush…I called the doctor and of course they had to call Denver and have them call us back…heaven forbid a person in Casper work on a weekend! So they called in the prescription…and of course I got snippy with the pharmacy because they never check there messages and so I had to wait an hour to get the prescription filled…it was funny though because this women came in and the same thing happened to her and I could tell she was sick…she sits down and we began to make fun of the whole pharmacy experience! She turned out to be a Pediatric nurse and answered all of my questions! It was awesome…I realize this thrush thing is a non issue…but it just irritates me…it is like one more thing, one more medication I have to give her…I am not lazy I just hate giving her medication that she hates and spits out at me…you really cannot bribe a 6 month old with candy! However she did grab a sucker I was eating the other day and began loving on it! 10 more days and we begin cheerios! Cannot wait! She is so interested in anything we are eating…

We have hard wood floors through out our house…so Maddie has been belly scooting…and doing pretty good but not getting to far (to slippery)…a great friend gave us a piece of carpet…I understand that it does not seem significant…but I knew my daycare kids would love it! Turns out Max loves doing summersaults on it and Maddox is actually moving and gaining ground with her belly crawling…it is very cool to watch her get somewhere without just having to roll…also she was able to sit up for about 3 minutes by herself with her own arm support…she is such a BIG girl!

Wednesday, December 2, 2009

She is...

Yesterday I described Maddox as happy and easy going then I said…”that is so clichĂ©” …I really hate when I describe her that way….silly thing is…she is…she is probably the best baby I have ever met…she is nice…she is calm…she is happy…she is smiley…she is lovie…she is cute…she is funny…she is very vocal…she loves to give raspberries…she only cries when she gets hurt…not when she is tired or hungry…just hurt physical or feelings…I have a hard time with this because I seem to want to make her different then the stereotypical Down Syndrome person…I seem to think she is going to grow out of this phase and become pissed at the world…however, if I hear one more time…”being this temperament will serve her well for her condition”…I will FREAK!!

Sunday, November 29, 2009

I may offend...

Maddox is not less of a daughter….I do believe this to be true…but I have many shortcoming….I understand needing to get over myself…I also understand I need to figure this whole insecurity thing out…I am sure most people are saying get through this ALREADY…the other day in car…(I talk to myself)…I said “Really Kim just get over this TODAY”…I could be such a great advocate…if I could begin believing what I tell people when people want me to answer questions or pretend I am ok! so I had a few days of bliss…I thought Maddox was cute and funny…and smart….everything she is but then…I see something that sets me swirling down into pure sickness…I see an image of something I am SOOOO not comfortable with…for example I think I can handle Down Syndrome and then I see I am not ready to venture out of my very layered and censored life…I really only let certain images into my view…I do this as a coping mechanism…I am very tiered of most people telling me that Maddox is a blessing…or that it is a non-disjunction event when sperm met egg…that I will be forever changed for the good…why does a story about a person with Down Syndrome have to be inspiring or heart warming…why can it not be about MY truth… that having a child with Down Syndrome…is scary, sometimes sad, frustrating, hard, and complicated…maybe I am the only one…I am frustrated with people insinuating that I am some how going to feel that this is the best thing I have ever experienced…that I will grow with this experience…I am waiting for these things to happen…and if Maddox is the best thing ever and a true blessing where does that leave Maximus…does this short change Maximus that he is not the chosen one…Maximus always says “I love my sister” “she is perfect” with a hug and a kiss…I think he is trying to tell me something…

Wednesday, November 25, 2009

Roller Coaster...

Every morning I still wake thinking that the “no bubble” ultra sound happened…I lie in my bed thinking today is the day I wake up from this dream…I think that this is the day that Maddox will be “normal” with no health concerns…this is a TRUE life roller coaster I cannot seem to get off of…some days I feel good about Maddox…I feel I can be her mom…that down syndrome is the least interesting thing about her…and that is true some days we are rockstars! I seem to go in highs and then I check myself back to reality…yesterday Mrs. K Maddox’s OT said that she was doing AWESOME!! That she thinks she will be sitting up sooner then later…like in the next couple of weeks…that her trunk control is strong…I video tape there sessions so I can work with Maddie throughout the week … she picked up small blocks and took them out of a bowl…she is amazing…but really would I be that amazed if I had not labeled her…would I be amazed that she may be sitting up sooner then later…I cannot seem to let down my guard in fear that something will happen…that we will get another diagnosis that I do not want…this holiday season brings up memories that are unwelcome in my mind …I suppose it is time I rewrite this holiday season…

Friday, November 20, 2009

Support...

Supportive…what does that really mean…I am not the most supportive person…I am when it comes to family…or friends that mean a lot to me…but going through the whole pregnancy, diagnosis, and now day to day…I have found what it truly means to be supportive and be able to accept support…I remember someone saying to me…that I needed to learn how to just say thank you…when I was pregnant I had such strong support…everybody excited about the new baby…then I had the “no bubble” ultra sound…people started dropping off the radar…others to my surprise took a great interest and started investigating what was going on with my little Maddie…I thought I was pushing people away with my attitude and sadness…then I realized it was the unknown of Maddox…that “different” is not easy for most people…through this I have found true supporters and new supporters…and I have learned to say thank you…and really mean it…what I am learning and that is hard to understand…is that only me, chad, and max will have a true inside look at living with a person born with Down Syndrome…and only Maddox will know how it is to live with Down Syndrome…others will come and go and think they know...and say I am glad I am not them…but little do they know…I have a secret…my family ROCKS…and these days there are more smiles then tears…my family is just like yours just a little more enhanced!

Thursday, November 19, 2009

Be Nice...

The other day talking with my Brother…he made a point that I cannot believe I have never thought of! My Mom was diagnosed at 12 years old with children’s rheumatoid arthritis…back in the day this was not a good thing and sometimes not manageable…but she was linked with the best care at the Mayo Clinic in MN…so she was able to have a full…but NOT pain free life…my Brother said “I am sure Grandma and Grandpa did not handle Moms diagnosis great”…I never thought of that…then I thought of my Aunt and Uncle that have a mentally disabled child (my cousin)… I never thought of anyone else in my family really going through what I am going through…I like to think I am unique and one of a kind! hence why this is so challenging for me…this past week has been raddled with name calling…I saw a post about the “tard supper” and then I read another post about a child calling another child that was born with Ds a “retard”…I am deeply challenged by this…I am sick to my stomach…I was raised not to talk with that language…I do not say nigger, or refer to things as “that’s gay” and I do not say “retard”…how will I teach Maddie to stand up for herself? How will we teach Max to stand up for his sister or others? I remember in middle school being made fun of…and it hurt so bad that I thought my insides were falling out…I remember crying and not wanting to walk out of that classroom…where I knew the boy would be standing waiting to call me names…I could do something about my weight to make the harassment stop…I could pretend it did not bother me and get through it…but I cannot change Maddox, or the color of peoples skin, or there sexual orientation…full circle I wonder how my Grandparents handled my Mom getting made fun of…I am sure she was… her hands were crooked…she could not run…and she just hurt…but she was beautiful…she found my dad…they made me and my brother...and she seemed happy and full of herself...I guess I will teach them like I was taught…JUST BE NICE

Saturday, November 14, 2009

Just be...

Sometimes I wonder what I thought about before I had Maddox…Down’s Syndrome has consumed me…it is what I talk about….think about…read about…when I was pregnant with her and we got the diagnosis I remember hoping that…she was just “slightly Downs”…or that she was Mosaic, Translocation, or only partial Trisomy 21…I asked the doctor if we could test….so we would know what we were dealing with…today I still do not know what we are dealing with…Maddox is doing amazing…she is rolling and reaching up high for things she wants…last night she was chasing a ball with her hands and scooting on her belly…she is so happy, content, funny….and she LOVES to laugh…I have never met a person that loves kisses as much as her…(do not tell me this is typical of Ds)...so this is where I get selfish…I start thinking what if she did not have Down’s Syndrome…I wonder does any of this great progress at 6 months old… really mean anything…is she still going to be teased and judged….is society going to see the Down’s Syndrome first and her second…or never get to know her…is she still not going to be able to drive…when does me being content happen…

Wednesday, November 11, 2009

Grandma...

Today a little girl said “someday you will be a Grandma”…I responded “maybe”…”if Maximus decides to have kiddos”… she said “no when Maddie has kids”…I responded “Maddox will not have children”…she of course asked “why” and I responded so sure of myself…”because she has Down’s Syndrome”…the little girl looked at me cross and just said “huh”…then I thought WOW that sounds like I have taken a choice away from Maddie… that I have no right to do! And 4 year old new it! I am troubled by this…I am not sure how I feel about Maddie having children…and will I be equally unsure if she cannot have children and she wants them…I understand she is 6 months old...but I am always planning for the future and “what ifs”…and this is another issue I have no control over...I remember when I was pregnant with her I told my husband we would have her “fixed”…that is so ugly…I am mad at myself for thinking it…so many things change when you have your little girl staring you in the eye…she is a human first with rights, wants and desires…and I need to just let it play out… and maybe relax!

Saturday, November 7, 2009

What ifs...

Maximus comes running out of the bedroom...just waking up from some good long sleeps…he is so full of life and himself! he is already asking if daddy will be home and if he has got his deer! he has a smile that melts my heart and spunk that makes me giggle…when Maddox sees him she has a grin from ear to ear…he always greets her with a BIG smile and an I love you…Maddox is always looking to make a connection with her 2 favorite people Max and Daddy…she stares at them until there is eye contact and then a full body smile happens…it is the best thing I have ever seen…I think that makes things harder…that they are just so adorable… I still am having a hard time believing…that I have no control…that I cannot make my family “normal”…there are days I would not change anything…the other days I am still just pissed…I suppose this is because I have been thinking a lot about the “what ifs”…it is time to decide who will take care of my children if the “what if” happens…I suppose we can minimize risk and never travel with one another…so we both will not die at the same time! Maddox throws a whole other dimension into the question…who will take care of my children if something happens to me and Chad…with Max it was with people we trusted and loved…but now with Maddox…the people we entrust have to be willing to except what comes with our Maddox…they also have to except the challenges…that they may have to put there life on hold for her…that Maddox may have to live with them forever…that they may be taking care of her for there entire life…I will not put her in a home…I want her to have a “normal” life…I suppose if she chooses to live in a residential home….that is what we will do…but I will never make her…so it poses the question…what do we do…who do we ask…to take on the life of the person we created…it is cute now…she is a baby…but I need to know my baby will be taken care of when she is 20, 30, 40, 50, 60, 70, 80 years old….she will still be my baby…but the world will view her very different…I do not want Max to feel he has to take care of Maddie…but I want him to if he chooses…this is the ugly part of life…making decisions…on “what ifs”…hoping you are making good choices for everyone in play…

Wednesday, November 4, 2009

Dreams...

I received a calendar featuring kids with Down Syndrome…and each month they have a little getting to know them…and information on Down Syndrome…I love it …and it has helped me a lot…funny how small things do…this month it highlighted something...I often forget…or maybe I have never stopped to realize…that people with Down Syndrome DREAM…how selfish of me not to think this…of course I want Maddie to dream…and dream big…I expect that for Max...why not for her…I wonder what she will be…I wonder what her interests will be…I wonder if she will take after me, Chad or Max…or will she be like Maddox…on the calendar it says people with Down Syndrome are terrific students, friends, and valued employees…how about we not limit that…I am sure my Maddie will be a great student…an even better friend…and maybe she will be her own boss…

Sunday, November 1, 2009

Treats Please!

Trick or Treating rocked! Maximus loved every minute of trick or treating… he ran to every door and told them to have a Happy Halloween…he is so funny with a lot of spunk…last year he taught some nice little friends some “boat language” that’s naughty words…this year he just told a man that is house was CREEPIE! When I see him run and love life as full as he does…I get excited to see Maddox develop…he has already rubbed off on her…she is VERY vocal and screams just to mimic Max…it is loud in our house these days…I do feel like I have been TRICKed into what is Down Syndrome…there is so many unknowns to Down Syndrome…parenting Maddie has not been what I expected…she is much more “normal” developing then I could have imagined…again I wish I went into this journey with not so much reading and false assumptions….there is times that I totally forget that Maddox was born with Downs Syndrome…and then I am actually start led when I realize she has it….I even go through the emotions of the diagnosis again… it is a very strange emotional rollercoaster…I am having a hard time rapping around that there is no answerers…no planning…no fixing…just hoping that I am doing the right things for her…I so want her to drive…yes I am still hung up on this…I want her to be independent and find happiness…I hate when people say she will be happy…she will be content….ooooohhhhh that rubs me the wrong way…Maddox has been more of a TREAT then I could have dreamed…she is SMART, cute, funny, and soooo cuddly…who knows what life holds for us…I guess we will see how we handle it when it comes….I hope it is more TREATS then TRICKS!

Sunday, October 25, 2009

being me...

U look tired…u have changed so much…u just do not seem yourself…comments that have frequented conversations lately…it is amazing to me that people have such a problem with empathy and/or understanding…I understand people not knowing what to say to a point… or how to react to me or my family…but Down Syndrome is not a disease you catch…it is not something to fear…I am tired…and I am not myself…I am tired because I have an infant child…that thinks she needs to talk in the middle of the night…I am tired because I am worried about her breathing, temperature, and just overall health…I am tired because I am carrying extra weight…I am tired because I have a daycare that keeps me on my feet all day…and I am tired because I also have a vivacious 4 year old…like any other mother…that has children…I am not myself…gone are the days… of that cannot happen to me…10 short months ago…my world changed…probably for the better…but it changed…who loves change…especially when you did not ask for it or want that change…I am not myself because I thought that I could handle anything…I am not myself because I have had to become more aware of my surroundings…who I let in to my world… I am not so eager to meet new people or keep in touch with old friends…that cannot help in my world…I realize this sounds selfish…but I have to be…I am a mother first…and a friend second…this may change as my role in this world changes…but for now I am not myself…I am searching for me…when you have a diagnosis of this magnitude…that you cannot change or fix…it humbles your entire being…I will live with a person born with Down Syndrome that I created for the rest of my life…I am frustrated that I will never fully understand what Maddox will feel and endure…I am different and I have changed…but I am better, stronger, and more clear then I have ever been…it is amazing when you are challenged this much…how stupid things no longer matter…but again I think this would be the case if I had given birth to a “normal” child…

Wednesday, October 21, 2009

Dance, Laugh, Love...

And today we danced…me and Maddox…she smiled and laughed…and I love her…I mean really love her…I am no longer afraid she will live with me forever…because I want her to…I think she is funny…and smart…and interesting…I bet when I am driving her on her first date or to work…she will make me smile and cry…out of happiness…out of love…today we danced…and I knew I was going to be ok…I hated the Down Syndrome…but it is not that important…Maddie will teach me more…I think she has taken away my fear of being her mom…by just being Maddox…

Saturday, October 17, 2009

Pumpkin Saturday...

Lazy Saturdays are priceless…Maddox is on the mend and feeling great…and Maximus is loving the weekend of all daddy time…these are the days that make me thankful that we are all healthy and happy…this week was full of should I…or should… I not call the doctor for Maddox…but she pulled through nicely and she is as spunky as ever…she is rolling both ways and following and finding her brother… she is amazing…we went to the pumpkin patch and picked out pumpkins and got them ready to carve…last year Maddie’s pumpkin was a question mark…WOW was that ever a huge premonition of what was to come! we knew we were having a baby…but I never in my wildest dreams would have thought I would receive a baby that was more then perfect…she is today looking at me with a full body smile and a great big bold raspberry…with pig tails…I am looking forward to many more fall Saturdays!

Wednesday, October 14, 2009

Fixed...no thank you!

Today I made the whole Down Syndrome declaration to a total stranger…I did good…she was staring at Maddie…and was asking good questions…not offensive ones…and then…I said she was born with Down Syndrome…she said “I thought so”…she is a professional that works with our local Child Development Center… I was so proud of myself...I was not embarrassed…ashamed…nervous…just…proud and excited…did I just say that…look at me coming along! This woman had a little girl born with her intestines on the outside of her body…WOW…that would be a hard one…the thing is they can fix that… and the little girl has a story…you cannot fix Down Syndrome…and today…Maddie does not need to be fixed…she just needs to be Maddox…She is sick AGAIN!! that does need to be fixed!

Sunday, October 11, 2009

More Aware...

Silly-goofy as Max would say…how events come together…while walking into Safeway the other day I was carrying Maddox…she is very interested in her surroundings...loves seeing faces and places…we are not in the door 2 seconds when a women comments….oooh what a cute baby…how old…I say 4 almost 5 months…but she is to small she says….oh shut up I thought….then no 2 minutes later...the pharmacists says how many WEEKS is your baby? I said she is 4 almost 5 months…the confused look in her face was priceless…then she says all preemies are small like that…I thought to myself…Maddox was not a preemie she was a big girl! But I let her think what she wanted…then when I was checking out the cashier asked me if I would like to donate money to breast cancer awareness month...while watching the today show I see t-shirts and signs with what October month means to so many people...but the sign I see lacking is the Down Syndrome Awareness month…I guess this is why people keep on asking me questions about Maddies stature…not enough information is out there…or people are just stupid because I am SHORT!! But that is besides the point…for most of my life I have worked for a non-profit organization...and one of the first things I learned is to get out and SPEAK…to anyone you can…one person told me that if a stranger cannot stop at a local convenient store and ask and get directions to your local club…then you have not done your job…while watching Oprah the other day a women in a tragic situation of losing her parents is now taking care of her siblings…a couple of them were born with Downs Syndrome…she said something’s that would scare a pregnant women sitting on the couch having a child with Down Syndrome…she said that a child with Down Syndrome cannot understand what we understand…they can not process it…this hit me…because people with Down Syndrome…can understand, can think, can process…remember it is just different…but there is no reason we should treat a person with Down Syndrome different…I think she or even Oprah would have known better…if only we had more information out there…I am a newbie to having a child with Down Syndrome…but I have realized fast that people want to understand Maddox…they want to know what makes her tick…they want to now her difference and her similarities…so I think that it is a great opportunity to show and teach people…how unique she is and how similar she is to there child…I am stumbling through this process…but I know if we can get more correct information out to people…that women sitting on the couch pregnant with a person with Down Syndrome will not be as scared…as what life has to hold for them and there family…I fully expect my Maddox to sit, walk, talk, play independently, parallel play, eat independently, run, jump, go to school, make friends, laugh, love, get a job, DRIVE a car, and live on her own if she chooses…I can even dream that maybe just maybe she will choose to marry who she loves….Wow she sounds just like your “Normal” child…information awareness ROCKS!

Saturday, October 10, 2009

Easy going FREAK!

These days I freak out…I am a high strung person to begin with…but anything can send me over the edge…I remember having to get a glucose test to see if I was diabetic…a routine test…sent me into a panic…I kept putting it off…and not being able to sleep…I am never sure how my freak outs will manifest…after I got so many diagnosis and unknowns…I dreaded anything that I did not plan for…you would think I would be able to just go with the flow…I keep trying to talk myself in to going with the flow…you know being easy going…but it has not worked yet…this week we were going to be pro active and get the flu shot…so we got it…Chad trying to settle me…told me that it only takes 24 hrs to become effective…but then I found out it taken 7 to 10 days to take effect…GREAT!! then of course one of the kids I take care of came down with the flu…probably the swine flu --H1N1…I FREAKED!! I frantically cleaned everything twice…and recalled every step that little person took…I cannot get that voice out of my head…that this is going to be bad for Maddox…what will I do with Max if Maddie gets sick and will we have to go to Denver…there is no way that Chad can miss anymore school…you would think we would be able to treat Maddox here in our home town…but they do not have a NICU…they do not have specialist to treat her…I will not even let them draw her blood…in fear they will blow her small veins…running through my mind…at 3 am is everything I need to grab before we go to the ER…Maddies heart specialists and surgeon cards…her discharge papers with her diagnosis’s…so if the doctor we see has a god complex we can bring them down to reality…should I drive to Denver to the ER or just down the street…sometimes I think we need to relocate to Denver…where Maddox can have the best doctors…and the chance to meet and play with other Down Syndrome children…I know that is dramatic…but with Maddie everything seems to be unknown and dramatic…what I thought was a healthy baby became…a baby with Down Syndrome...heart defect…TEF/EA….and brown hair…random I know…but I always thought my daughter would be a blondie…but for today she has a stuffy nose but no fever…please please no flu…no freakin flu…

It is snowing here! Maximus thinks it is Christmas time….and is enjoying making yellow snow! Maddox is loving raspberries and sticking her tongue out and spitting…maybe I should worry less and enjoy this time more…but that would be easy going!

Sunday, October 4, 2009

To Know...90%

The other day I was reading a blog and they were discussing the 90% rate of terminating babies that will be born with Down Syndrome…it automatically took me back to the day of having the “no bubble” ultra sound…I remember lying on the table and my doctor talking to herself and saying TEF/EA and Down Syndrome…I knew then that my baby had Down Syndrome…I just knew…I went and had a amino synthesis…and it came back that my baby was chromosomally enhanced…with that the doctor said you can terminate the pregnancy and we can get that set up for you…I recall saying “no no I will not do that….I cant talk about that right now”…but the truth is I thought about it…I was scared and I did not know what to do…I remember calling my brother and asking him what to do…he said he could not answer that…Chad said the same thing…he was excited from the beginning about having a Down Syndrome child…but I do remember waking up one morning and saying to Chad…I want to have this baby…and we will be ok…I remember seeing the relief on his face and him saying …”I thought we were headed for an abortion”…I also remember reading this statistic and it making me sick….if you think of this and look around at people in our lives…this is a dirty little secret…one of my friends said that she could not go through with having a child with Down Syndrome…that is ignorance…I know that I complain a lot….I know that I have struggled with this….but I just needed to be educated on Down Syndrome….that Maddox is more like Maximus…Maddox is “normal”….she is happy, content, she yells out to be picked up and cuddled, she laughs and giggles, she loves to sit at the kitchen table with us…she just part of our family…someone said Down Syndrome will be the least of the interesting characteristics of your child…and that has rung true…Maddox is a human being….when you look at this…it really is about being self centered and selfish…Maddox did not and does not deserve to have this stigma…she deserves the world…and we plan on giving it her…she is our ROCKSTAR!

On a side note…to know or not to know…I told the doctor I wish I did not know…she said you will be glad you know soon…she was right…this allowed me to make choices…the choice to have her…the choice to learn and educate ourselves…the choice to call for help…Maddox has had therapy since she was born…on Tuesday her Kelly (OT) said this is our pace setter!

Thursday, October 1, 2009

My "Normal"

Today I found my “normal”…I have been struggling with not feeling like myself…today making breakfast for a little guy that I have taking care of since he was 1 month old…now 2 years old…and I love him dearly...I was singing a song on the radio…I looked over to him…he closed his eyes and he began swaying to the rhythm of the music…I began swaying and then we began to dance…then we began to laugh…then Maximus joined in…then we chased…and then we played hide and go seek…then we made forts and tunnels…then we sipped hot chocolate with yucky charms marshmallows…then my “normal” appeared and I liked it…I really liked it…here is my smile…and with that Maddox found Elmo…tickle me Elmo…it made her giggle and wiggle…and when I put her down she rolled to Elmo and knocked Elmo down…and ate Elmo…Maddox found Elmo…I found my smile…Maximus still has not found the potty and G. found my “normal”…thank you!

Wednesday, September 30, 2009

Still!

Your just not enjoying her infancy…my brother thinks he knows so much!! He is right…I think that pisses me off more then him saying it…reflecting back on those words… I am getting that I am not just enjoying Maddox…I am so into pushing her and making sure that she is getting everything that will make her great…that I forget just to enjoy her smile…her whole body smiles and her laugh…it echoes in my ears…she is getting so aggressive…she took a strawberry out of my hand and started sucking it…I just want to forget…I want to forget her diagnosis…at times I wish I did not know…I wish I could forget that yes she can be great with rolling over and sitting up…that she can be so strong…but that does not mean she will go to college…that she will live on her own…that she will get married…that it is what I am hung up on...I cannot get it out of my head…I just want to know…I want to know if she will stricture…I want to know if she will be healthy…I want to know if she will be happy…I just want to know…Max asked if he is still four…I said yes…and thought Maddox still has her enhancement…

Monday, September 28, 2009

Rolling in Yucky Charms

I remember now why I do not buy Lucky Charms…my four year old thinks he needs to separate all the marshmallows out of the cereal…he only eats the marshmallows…at least he has to have milk! then tells me how much he LUVs it with a mouth full and them running own his shirt!! with the yucky part of the charms he uses to make shapes on the table…or tries stacking them up and gets frustrated when it does not work…I did think he was a genius…maybe not today! At the doctor last week I asked about Maximus NOT pooping in the potty…he told me he has never sent anyone to college still pooping in a diaper! then he suggested to take down the Nerf gun and M&Ms that we have been bribing him with…and said he will do it when he does it! An that nothing will get him there faster then us not making a BIG deal out of it…so today I will take down the goodies and surrender to defeat of my 4 year old!

Maddox is rolling across the living room…it is amazing and she loves to get herself underneath the little tike table and play…she was yelling at me this morning to let her down to roll…she loves to find Max and roll to him…she then belly crawls or turns to get inn the middle of what he is playing…he is excited about her for a minute and then he expects her to move on! She is getting so social and all smiles…I am glad she is feeling better! I really think she is belly crawling...I cannot wait to confirm it with Mrs Kelly(OT!)

Saturday, September 26, 2009

Nondisjunction happens

Please stop and think before you speak or write a comment…I am so guilty of this that I cannot believe that I lived with myself for 34 yrs! I am the queen of NO tact…and I have a great ability to put a foot in my mouth on a regular basis…but with Maddox came a sense of not knowing anything and humility that cannot be explained…I am calmer and quieter and not so in your face…where am I going with this-- Facebook…Chad and I joined so when we were having Maddox…everyone could get updates on her status…it was just easier then calling everyone…with that came connecting with old friends and family…that you once knew and deemed important…now are strangers…I do think we should all have our own opinions…but it offends me when people try to make political statements that is a direct hit on me…a old “friend” tried to make the point that government assistance should not be used for children born with something “genetically wrong” with them… that there parents should be “cut and tied”…WHAT…I should be cut and tied because I could not produce and “normal” child…my beautiful baby was not a mistake nor was she a ooops….she was planned and she is perfect…Chad and I did what we needed to do to have a healthy baby…I took folic acid, drank no alcohol, no caffeine and ate hormone free meats even thanksgiving turkey! But meiosis happened…and we created a 47 chromosomally enhanced bouncing baby girl…people assume that everyone is like they are…now I do not think having children is as easy as I did a year ago…now I really wonder how we go into producing children with just “it happens attitude”…lots to think about and how you will handle the emotional and financial toll of having a special needs child…the prejudice against my child started in the womb…with derogatory statements towards a child with down syndrome…and they continue with people thinking that I should be fixed and should not have more children… because my child is not like there child…I suppose my child will not be able to play with there child…it disturbs me that people agreed with his comment and put a “like this” to it…by government standards my child someday could receive assistance…and by insurance standards she has a pre-existing condition…and could be dropped by our coverage…I suppose now these same people will think they have the right to tell my Maddox if she can reproduce...

Wednesday, September 23, 2009

Sick Babies!

My babies are sick…Maddox has a sinus infection and Maximus has a double ear infection…I just knew it…I tried to wish it away…but no luck…Maximus asked me to kiss his ears better…I could not…Maddox was just not right…she was quite…sleepy and very sad…they both have antibiotics and are on there way to recovery…weird but neither one of them had a fever…and Max would tell me is ear felt better by mid morning…I was nervous when the doctor was checking Maddie…all my thoughts turned to does she have pneumonia, the swine flu, respitory infection, will we have to go back to Denver to the NICU…but no it was just a sinus infection…I should have not talked or read anything before I had Maddie…I am now making myself crazy with preconceived ideas of things that are going to go wrong with her…Maddox is stronger then ever…and now she is talking and telling us all about how she hates to be sick!

Tuesday, September 22, 2009

Maximus 4!

Today Maximus is the big 4! and he is sick…it seems that every year he is sick on the big day…I need to get his darn shots after his birthday from now on…he was very excited for today…he wanted spiderman cupcakes and a diego cake…he got it all…and last night I went 3 places looking for barbecue ribs for him…this year it is on my list not to spoil my kiddos so much!! Maddox is sick to…she has a cough and is a bit cranky…it will be a good night to go to bed early…but Max and Chad are going sage chicken hunting and me and Maddox are going to cuddle…sounds like a perfect night…

Monday, September 21, 2009

assume what...

What can be better then sitting in the dentist chair? scratching and scraping on my teeth was better then the hygienist-asking question after question...she began with-- anything new with your medical history? I answered with a simple-- I had a baby...oooh she says a boy or girl? I answer a girl...what’s her name? I said Maddox Rose and we call her Maddie...then she goes on and on about how we are always more nervous about our first child...I still do not understanding why she thought that Maddox was my first child...but whatever...then she says when did you have her? I said May...oooh she says what a perfect time of year to have a baby...she then says all that matters is that she is healthy...which automatically pisses me off...then she said-- when you have another child you really need to come to the dentist...I said to her I am not having anymore kids...she gave me “a look” and turned away...but did not ask another stupid question...I thought to myself...if you are not good at small talk or interested do not initiate it...I used to assume that babies came healthy...now I do not...most people just assume that I had a “normal” baby with perfect health...I realize today talking with me is like “pulling teeth”...I have a thing about people who assume...I do not have the patience for ignorance...for a person that assumes that we all have healthy babies...I knew if I corrected her...she would tell me how she new this person of a person that knew a down syndrome person that is just the sweetest thing they ever known...you know what they say about assuming it makes a ass out of you and me...today I guess I was the ass...

Saturday, September 19, 2009

I declare!

I did it! Today I declared Maddox has Down Syndrome to a total stranger…it felt good…I was picking up Maximus dinosaur cake and this man said he was a bus driver for special needs kids…and he was ooohing and aaahing over Maddie…and I just said it…I said she was born with Down Syndrome…this is huge…I feel ok about this…She giggled and smiled and is just cute…I got a comment the other day to enjoy my time with her…I have been thinking about this a lot…I do need to enjoy her more and worry less…I know she will be my last child…I need to enjoy the little things more…and stop thinking so much about other people…and what they are thinking or not thinking! crazy because I was such a social person…I am not very social now…I maybe leave my home a couple times a week...So today with my new found reassurance I took Maddox to the mall…I put her in the sling and went…this time I put her facing forward and out so she could see the world and world could see her…she liked it…

Today Maximus went sage chicken hunting! He puked in the truck…but kept focused on the hunt…he was so excited to go…he has not slept in days…I think he was so excited that he lost it! Now he thinks after nap that he is going northern pike fishing in Casper Wy…what a kid!

Thursday, September 17, 2009

Big Girl and Boy!

Check the doctor off the list!! Yeah…it went great…Maddox is a big girl 12 pounds 9 ounces and 23 inches long!! and best of all she gets to start on cereal…of course I had to ask if I should give her the special cereal that helps with brain development…I thought just maybe it could help with the whole later in life…driving and living independently thing…well that was shot down! He said regular Gerber cereal will be just fine…I hope he is right…Maximus is also doing great he is 39 pounds and 39 inches long! he is a box that moves like a tank…the shots sucked…they both cried…I am feeling so much better after the doctor…she will not have to get the monthly RSV shots…because she was a term baby…and they increased her dosage of indigestion meds…I hope she is not in pain…this indigestion thing is a hard thing to gage…

I was bounced back to reality fast…when someone who was staring a Maddox and said…”I think she is going to be ok…she does not seem to be chromosomally enhanced (smirk)…she just does not look like it” I sighed and said “no she has 47 chromosomes and she is going to have to work hard to get to drive or graduate high school”…I think it is funny how people want the Down Syndrome to just go away…some how I think it makes them feel better…I do hate the sorry look on there faces…it just gets old…especially when at that moment Down Syndrome is that last thing on my mind…I am trying to raise a kid…I am coming to grips with our reality…at this moment…I know people only think of Maddox when she is staring at them in the eye…and I think it makes them uncomfortable that she can look so perfect and cute and still be so different then them…

Wednesday, September 16, 2009

School and Doctors!

Last night I had a nightmare and it was not about Maddox…so that was a step in the right direction! Instead it was about me forgetting Maximus at preschool…to bad he has decided not to go…his excuses these days are that he is sick, has a tummy ache, he has to play soccer, he is just to busy and he does not have time! a couple days ago at the park the preschool was there playing and the teacher told me they had an opening for Max…my complete look of horror was evident to the teacher…she told the principal that I looked like I was going to have a panic attack…so as I was talking to myself about why we needed to send him to school…Maximus showed me why he just cannot go! At the park today he whipped down his pants and started peeing in a puddle…he thinks chocolate milk comes out of thin air…he only poops in a diaper…and he will not get out of his pajamas…ooh and did I mention he sleeps in till 9 or 10 am daily…and he naps! Maximus is not ready for preschool…and I am probably still not ready for him to go…

Max and Maddie have there checkups at the doctors tomorrow…I have decide Maddox has an ear infection, a fistula, and is tiring to easy…its gotta be her heart…and she now has indigestion…that she is already taking medication for...hope all my fears work themselves out!

Monday, September 14, 2009

Talk with who?

You should talk with someone! really and what should I tell this someone…that I am sad that my daughter is not like your daughter…that my daughter could have been amazing…and now she will only be amazing for a Down Syndrome child…that when she rolls over it is brilliant…not just expected…should I tell this person that I am scared that I am not doing everything I can for my little girl… and if I do not do enough…she will not be the best she can be…that she will live with me forever…instead of being independent…should I tell this person…that I hate feeling inadequate as a mother, as a wife and as a human being…should I tell them how much I hate how I have lost myself through this…not just having a child with special needs but as a person that thought she could do and survive anything…should I tell this person that I am scared my little girl is going to die…or that I am scared to let my son leave the house in fear I may lose him…should I tell this person…they cannot possibly know what I am going through because they have never lived my life…that the problem with talking with that someone…is they do not get it and cannot get it…and I know it…I guess it is Monday!

Sunday, September 13, 2009

Club Kiddos

In my last life I worked at a Boys & Girls Club…mentoring kids…it was a great gig…that grew me up fast…to see what the world was about…I thought when I was working there with under privileged kiddos that I had figured things out…I saw it all from kids being abused to broken families and kiddos just hungry and alone...we had a group of kids that we “raised”…from the age of 10ish to graduating high school…we only had one not graduate high school…now most are in college and or working…I remember working there and thinking this is the strangest thing I have ever done…I could not relate very well to the kids because I had never walked in there shoes…but I was a latch key kid growing up with a single parent…I had a brother that looked out for me…but he left for the Navy and I was on my own…but I was never hungry…my dad never did or sold drugs and he always tried his best to keep a stable home…not this group of kids they lived with parents as drug dealers…and parents that just struggled with what comes with life…many of these kids we still keep in touch with…they still call to see how we are doing and we keep in touch through facebook…I am still learning from them…last night we ran into Marcus…he was always a great kid with a questionable family but a very close family…when I said Maddox was born with Down Syndrome…he said “ok”…again with any of the Club kids or any of my husbands students that know we have a daughter born with Down Syndrome they say “oh”…no… “I am sorry”…or “maybe she will be ok”…or give us the look of…I am glad it is not me…I remember one student even saying to us maybe there little baby will go to the same school and be in the same class as our Maddox…that was so great and refreshing to hear…I remember just being so amazed at his maturity and wisdom…something I do not have on the this subject…I think it is because Maddox is the first Down Syndrome person I have ever met…I was not raised with her in my classroom or in my neighborhood…today I think it is so neat that Maddox will be in a classroom with other kids and go get help when needed…If only I had the grace that my club kids have…it is something to look forward to…Maddox is a lucky girl to be raised in this day and age…with more education and more people like my club kids and less people like me...

Saturday, September 12, 2009

Sniffles

Maddox has her first cold…she is so stuffy…. she even has teary eyes…but she is a trooper…she is smiley and social…and very talkative…I cannot help but think she is stricturing...I am battling calling the doctor…she is bubbling at the mouth which is a sign of a fistula…she is also not eating as much as she was last week…I know it is silly that I am so freaked… Maddie is also sleeping through the night…I should be excited about that…but I am not…I am worried she is not getting enough food and the tube to her tummy has something blocking it…good thing we go for her 4 month check up this week! Maddox is an amazing baby…she is so chill…I can tell she has a great personality and that she is going to be full of herself…Maddox loves to be kissed and cuddled…but she is also very active and loves to be in the middle of everything…I love how she reaches and bats at whatever we are holding…Maddox licked her first apple yesterday…she did great grasping it…then putting it to her mouth…then she had a HUGE poop…I hope I did not damage her by giving her an apple to early…

Last night we went to the football game…it was fun…and chilly…Maximus loved it…he packed his football bag (spiderman backpack)…he filled it with his favorite things, his remote to his dinosaur…one light up reindeer slipper…his favorite mtn goat stuff animal…and a tape measure…how random is he! He loved it and now wants to play football...but he thinks playing football is jumping up and down the stadium stairs…at the game of course someone called Maximus a girl…I am not getting that…he was wearing a dinosaur undershirt with a blue airplane t-shirt, blue pants and his dinosaur boots…I guess it is time for Max to get a haircut…his blonde locks are getting long! Another women kept on looking up and staring at Maddox…it was annoying…but I am proud of myself… I just smiled at her…of course I thought she was staring at the Down Syndrome…but I decided she just could not believe what a beautiful baby…that needed a hat!

Wednesday, September 9, 2009

Reality

When you find out that your child has a special need…it is interesting how you choose to deal with the diagnosis...many people turn to a higher power…people would say to us that we are special parents or she is a miracle…I am conflicted about all of this…I do believe in god and that we will go to a “special place”… my husband however…not so much...he is an atheist…maybe that is why he is dealing with this better then I am…he has nobody to blame…he just sees the science of the 47 chromosomes…me on the other hand is very confused and angry...the same way I was when my mother died…they say god only gives us what we can handle…so I hope I start handling this soon…I also want to be prepared for when Maddie asks why she was so blessed to be chromosomally enhanced…I have to have a good explanation…I am not thinking she will take a simple because god wanted you to be that way…that would not be a good enough answer for me…it is easy for us to rely heavily on an higher power…I have not once prayed about this...or asked god... why my little girl…one of my biggest pet peeves is people who say she is a miracle…no she is not a miracle… she is a strong little girl…with a great surgeon that fixed her…and I did a great job carrying her to term…and if we are such special parents…I feel bad for other parents that are never going to be as special as me…I think people say things to make themselves feel better…because I have never walked away from a comment putting this in gods court…to this ever being ok for me…my little girl is going to have to live with 47 chromosomes daily…even I can take a break from Down Syndrome…my little girl cannot…and I think that sucks…I wish I could take that extra chromosome for her…it is not just the social stuff…it is the life of medical issues that comes with Down Syndrome…it is the learning delays she has to endure… that she know she has….I just GET to hold her hand…

Sunday, September 6, 2009

Cry Baby Cry!!

Talk about a rough day…amazing how there are good times and not so much…it is also crazy how things come back to you like a dump truck…yesterday I cried most of the day…I understand this is all about me and that this is very selfish…Yes my daughter was born with Down Syndrome and I am not dealing with it like the ROCKSTAR I want to be…to do that I would be denying all of my true feelings and thoughts…through this I have lost most of my self-esteem…I feel like I am inadequate…how my body could produce this child that is different then most…lets get down to the nitty gritty….when I got pregnant it was not what I dreamed or envisioned…I was a prom queen and I realize I am living up to the stereo type right now…because I cannot get over myself…some days…I think I am going to be ok…and handle if we have to work harder for her to communicate…that she may or may not go to college…I also get that this is what you get with any child…I also get that my job now is to educate people….the hardest thing is that I have to educate myself first…

Yesterday I read an article that put me over the edge of reason…all of my fears came to real life…I read a GREAT article that a girl with Down Syndrome wrote…she is a senior in high school…and I must say she is beautiful…she opened my eyes and made me think how shallow I really am…but with that said… I know one day that Maddox will know she is different…this is one of the biggest hurdles I have tried to overcome…that I know my Maddox is high functioning which means she will now she is different…and when she asks why I am I different I will have to tell her…her dad can tell her inside and out why she is different from the science side…but I am her mommy and she will wonder why I cannot fix this…I have kissed her hurts…I have tried to fix everything and anything for her and this I cannot explain or make go away…this girl wrote about just wanting to be excepted and that she wished people could see her for who she is on the inside not just what she looks like on the outside…this single article truly changed what I think and how I feel….one of the things while blogging all this time that I have thought about is how would a person with Down Syndrome feel if they read this…I have to say me as a person would not feel so great…I would ask myself how could a mom feel this way…how could a person… a mom talk this way about there own child….I can say this has not been easy and has not been one of my finer moments…but it is my reality and my thoughts…I want to get past myself…this is the only way I know how…to talk through it…and lets face no one wants to hear this over and over again…I am kind of beating the point to death!

One of the other things I came to a realization yesterday was that when I left the hospital with my son Max no doctor or person said to me…now you will have to watch out for sneezing, molding of the skin or hiccups…because this is a sign of babies in distress...that I will have to watch for heart problems, EA/TEF, vomiting, small orifices, ear infections, celiac, and I can go on and on…every time Maddox spits up… I think should I call the doctor is she forming a stricture…If she does not poop I think she is dying…I am very hyper to anything with her…with Max I did the typical first parent thing...when I got the diagnosis of Maddox I truly believed I received it because I did not think it could happen to me…now I think I have to know everything that could go wrong just in case something does go wrong…I could lose my sanity at anytime!

Saturday, September 5, 2009

Not just a walk!

Today is the Buddy walk...I am feeling guilty I am not there...but I am scared to death to attend...the Buddy walk helps support the Down Syndrome of Wyoming...There will be people with Down Syndrome there...I know this sounds crazy but I get sick to my stomach when I think about it...the other day I was in Target and I notice a boy with Down Syndrome he must have been about 20 years old at least...he was holding his Moms hand and for a moment I thought this could be sweet..then I heard her say "do not go to far..let me see you" This threw me over the edge...again...I am not sure I am ready for this...at the walk today there will be ages of Down Syndrome that I am not comfortable with..I love Maddox as a baby...even a toddler...I am not sure I can handle the teenage and adult years...I hate when people say she is such a cute baby...or she is so sweet and small...she looks like a doll...I ALWAYS think yes but...she will grow up and the cuteness will fade away...I am sure she will be just as sweet..my reality is that she may live with me forever...and it may be ok...but right now it is not what I signed up for...I try not to think about it to much..but it creeps into my head...frequently..it is what kept me up at 4 am this morning..knowing I should go support my new life...and instead I have hidden...hoping no one will notice...Chad does not think we should do the walk because this our child not a cause...me I am just scared...maybe next year...

Max is still not seeing the point of school or potty training...this whole week we have been at the park when the preschoolers come out for recess...he asks why they are there and has even met a little friend..that he loves already and SHE gave him a gift...a piece of tree bark that he also loves and thinks is a sword, a plane and northern pike fish...he is on the eccentric side...as for potty training he peed on a bike this week and got a timeout...and thinks it is great to pee at the park on the basketball hoop...I think I am losing this battle...FAST!

Tuesday, September 1, 2009

Chubby, Chunky, but Fat!

I am over sensitive...I know this...but the other day in Walmart a women said oooh cute baby...I love chunky babies...I thought whatever...then yesterday someone called my baby fat! not just fat...but "oohh she is soooo fat"...really...I am freaked about it...I hate that...is she going to have an eating disorder...I know extreme...so then I talk with someone with "limited knowledge" of down syndrome…and ask if Maddie could have a eating disorder later in life...they said "no that is the great thing about down syndrome they are oblivious to that kind of thing" WHAT...I cannot figure out what is worse my kid being called fat or that she will never know better… at least she will never have an eating disorder...I am fucked! I cannot say it any other way...I need to just keep my mouth shut and not talk... or make eye contact with any other person…then I do not have to get into these kind of conversations...Maddox is perfect...and smart if she wants to have an eating disorder she can...what am I saying! today is a day I wish I could start again…tomorrow will be better...

Sunday, August 30, 2009

Cool Panic!

I think I am starting to have panic attacks...sometimes when I realize the reality of my life I have to calm myself down by singing Cool Rider from Grease 2...I love that song and love that movie..Chad once asked me what I wanted to do in my life and said I want to be a gas station attendant...I know I have high hopes for myself..I thought my cool rider Wyoming style finally came when I was walking on the bike path and a beautiful cowboy in a dark stetson hat and trench coat riding a horse.. came over the hill with the sun rising behind him... he stopped to talk with us... I told my friend that my cool rider has finally come! to bad it turned out he was just looking for a missing steer from last nights rodeo! anywho..my point is that I could have never dreamed that I was going to be the mom to a little girl that will face more challenges then I can ever dream...one of the things I dealt with when we found out she was going to be born with downs...will she ever love Grease 2 as much as I do...will she ever love the musicals that I do...I remember I could not sleep and I rented Mamma Mia and I watched it over and over ... I love that movie...I remember thinking I hope this little girl will want to share this with me...I realize that seems very small and unimportant to most people but the her loving musicals is a big thing for me...I think it represents all the things we may never share together...shopping for a prom or wedding dress...wearing makeup...driving a car...I think and hope Maddox is a "high functioning" downs person but we will not know this for a long time...I realize she is a beautiful, cute baby...I can see that...but that is not what keeps me from having panic attacks..it is who she will be as a teenager and adult...I am scared to death that she will be made fun of..that she will never fall in love...that she will fall in love and it will not be reciprocated...I know this is a reality for "normal" people but I think when we have children we do not think of these issues...we think who could not love this perfect little person! She is a great baby and I do not like when people say it is because of the down syndrome...I like to think she is a great baby because she is a great baby...I did something big yesterday I took Maddox back to Walmart in the baby sling...so she was front and center...she loved it...she giggled and took it all in...then of course she fell asleep...of course someone commented how small she is for her age..whatever...I did not get pissed or upset I just smiled...

Wednesday, August 26, 2009

Getting Better!

I think I am going to make it! I think I can be Maddox's mom...I know this may seem weird .. But she is really growing on me...I cannot wait for her to wake up in the mornings and I love her smiles...when she laughs...I cry...because I love her and want her to be a part of our family..I think I am going to make this work...she is a great little person...with big personality already..she is cuddlier and a drama queen...she already knows she is a princess..good days!

She had a great therapy session yesterday..Kelly (OT) thinks she is right on for even a "normal" baby to make her milestones...she is tummy crawling and rolling over belly to back...know we just need to work on the neck muscles to get her to roll from back to belly...she is almost there! I think she will sit up soon..she is very aware and wants to be a part of her surroundings..I love that...

We puddled jumped yesterday..it was GREAT!! Max loved it and so did the other kids..there is something awesome to be able to see kids explore there surroundings and not get in trouble or have to keep clean...it was great to see them throw things in the puddles and see how big of a splash they could make...or sitting in a puddle and just enjoying themselves...and there is nothing as fun as to hear the laughter of a child...true laughter and enjoyment..what it would be like to be a child again...

Saturday, August 22, 2009

3 yr olds are EVIL!

Today started out like every other...me and Maddox chilled and played...she was happy and I was happy! then the Maximus awoke! he is truly something else...He woke up and wanted to go play at Natural Bridge..so I packed a lunch and packed up the kids and we made our way down to Natural Bridge..It was beautiful and not many people around to begin our great adventure...Max collected rocks to throw in the river and Maddox just enjoyed the ride taking in all the sights and sounds...Max began to throw rocks in the river and then we made our journey to the top of the bridge..where he informed me that rocks like to be thrown off the top of the bridge..where people were standing below...we made our way down and he waded in the water and threw rocks with some lady we did not know...she was very nice! as we were standing there of course there were rude people saying "how old is that baby..it is to young to be outside on a hot day"...seriously people need to talk quitter so I cannot hear them...anywho...Max decided we needed to go look for the dead mouse we found last time we there...I grab the picnic...Maddox was getting hungry so I began to feed her...Maximus thinks he is older and starts following these older girls...and the park began to fill we people...so I tried to explain to him that I needed him to stay close and climb the rocks or play on the playground...then he turned to me and started erupt...I mean the WORST fit I have ever experienced with him...it was so embarrassing...heart crushing....awful...I just picked up Maddox..got the stuff and grabbed Maxs hand and lead him to the car...he did not stop screaming at the top of his lungs until we were leaving the area...on the way home I was thinking to myself .... really should I be a mom...I cannot even take care of a "normal" child how am I ever going to be good for Maddox...I have already screwed up the "normal" kid...I am very scared what I am going to do to my Maddie...I sent Max to his room and he had his first grounding today...he is 3 1/2...parenting books suck...so the day ended with a long nap for the Maximus...We will try to better tomorrow

Routines? Spidermans? and Frumpy!

It is amazing how Maddox has fallen into or I have adjusted to her daily routine! she awakes around 7ish, plays and eats then chills for awhile...throughout the day she eats every 4 or so hours...naps and goes to night night at 9ish and only eats around 4 am...it is amazing that she is 3 months and she already know that I cannot get up during the night more then once or I will die!! She really is exceeding all my expectations...last night we watched the video of her OT Kelly that comes weekly and works Maddox out and teaches us how to work little Maddie out...so she can be the best little Maddie she can be! I had my development charts out and I am so happy that she is currently meeting all over her milestones! this is huge to her development and future! during her session with Kelly (OT) she would not stop watching herself on the video recorder...it was funny! she really enjoys looking at herself and other babies faces...which is very typical for a baby this age...again she is more like a "normal" baby then she is not...it seems currently the only thing that is different about my little one is that I cannot get over the fact she has down syndrome and that she has the cutest downs features and faces I have ever seen...she really is growing on me..last night we talked for about an half hour...she is becoming quite the talker! and very opinionated...Maddox is almost rolling over from back to front and I can see her flexibility on how she lays in the most awkward position with every body part touching the floor except her arm is stuck underneath...hard to explain!!! but very cool...she recognized me and got excited for me to pick her up yesterday for the first time!! I cried because she smiled at me and ran her legs through the air...

Maximus is not going to preschool at this time...he is just to young...he really cannot get up in the morning and make it there!! I understand this sounds like I am just lazy.but Max is very... how do I say this ...his own little being and he is perfectly happy playing here with his friends and thinking he is a dinosaur, a hunter, or like yesterday spiderman with barbie wings flitting around the house...of course that get--up had a sword! Chad and I figure that he will go to school soon enough and no longer be able to do as he please all his live long day...

Chad has lost 15 pounds so far this month and I do not feel I have lost any of my baby weight...I am so frustrated that it has not just disappeared...I realize I have to work out and change the way I eat and I have done that...I have ate less and eaten more fruit and veggies...I workout daily for at least 30 to 40 mins...i hate that it is so easy for him and not for me...I really believed that as soon as I had Maddox that I would be back into my old clothes...I am not sure why i thought this..it was not how it happened with Max and yet when i packed for Denver to have her I brought all my old clothes which none of them fit...Chad just rolled his eyes and laughed...so I ended up wearing jogging pants daily there...boy did I look good! not! I look frumpy and unkempt...I really need to get this put together...and if chad say one more time that I need to just work out harder or he needs to see how hard I workout to see what I am doing wrong... I am going to kill him! Or he says you look great you just had a baby...well then do not video me...because that is suicidal! any who we are working out together this morning..should be good times!

Thursday, August 20, 2009

What is Next!

My day started like any other...working out and thinking to myself really should yoga hurt this bad! Then Chad said "dont freak out honey there is a mouse in the bathroom...really at 6 am this is not the news I wanted to hear...I am completely freaked out by mice! Then of course Max came out and greeted me like everyday! "Mommy I peed the bed! I think I need to learn to pee in the potty and poop in the diaper...Mommy I am not as big as a tree so I cant poop in the potty!" He will not poop in the potty it is hopeless! I still have 5 pkgs of peanut M&M's and a Nerf Gun hanging over my toilet just waiting to be used! but today I guess is not the day! we are going on 3 months with this hanging over the toilet!

Today got better when I was reading about Down Syndrome...it seems that this is how I occupy my time these days..did you know that you can have a down syndrome child and they can also be autistic...I am a lot freaked about this and I need to call the doctor and discuss...it was crazy when I received the diagnosis of Down Syndrome many people would say at least you will not have a child with autism..this stressed me out...because I knew if there was a chance to have a down syndrome kid with both diagnoses it would be my kid...When Max was born I was very concerned with him having autism...I had him when they had just came out with the 1 and 150 kids are diagnosed with autism and Jenny McCarthy was out pimping her book...so of course when Max was getting his MMR I began consistently asking the doctor if he thought Max was autistic...I remember Max lining up his dinosaurs and I was convinced he has autism..the Doctor told me to stop watching Oprah! Anyway in Denver they have a support group for parents of children with Down Syndrome and Autism so I guess I will not be the only one...sometimes it just hits me that my little girl has Down Syndrome..it is crazy how I forget for a time that she is not "normal" because in more ways then I could ever imagine she is like a "normal" baby...she is temperamental and she already wants to be in the middle of things...she cried until I held her today while we were playing with playdough..she grabbed at it and held it for a time...she even held a paintbrush the entire time the kiddos were painting...she is pretty a cool chick! Ms. Kelly her OT was very impressed with her today! Maddie scooted on her tummy for her and mimicked hi to her...I cannot believe she is already 3 months!

on a side note...football season is starting again and I am in mourning my beloved Brett Farve has broke my heart and signed with the enemy..the Vikings aka Mud Ducks...My family is from Wisconsin and life long Packer fans...Mr Farve is a freak..but at least he is fun to watch...and get beat by the Pack! go PACK go!

Sunday, August 16, 2009

Time Flies!

It seems like yesterday we were getting ready to have a baby! Now Maddox is 3 months old and cooing, smiling, grasping and transferring in out of her hands...she is even kicking things with her feet! she is amazing...We went to the Wyoming State Fair Thursday night to meet up with old friends...it was great...at one point someone said to couple of us "can you believe we are here watching are kids enjoy the rides! and we are still alive!!" it is truly amazing that we are alive and kicking..Thursday night was the first time out load I admitted that Maddox was born with Down Syndrome..it was hard..I cannot explain how difficult it is for me to admit and except that she is not like everyone elses kids...crazy because I have spent my life trying to be different..I always made sure I was going the opposite way of the crowd and now I am wishing I was part of the "normal" crowd...what to do...I have realized I am really ok with her as a baby..I am so scared about her growing up...I am ok being a mother of a baby with Down Syndrome I am not ok being the mother of an adult with Down Syndrome...I am irritate how people say "but she is so cute...she is the cutest baby I have ever seen...she is so good..."they do not get that I can see that she is a good baby that I often think she is cute...again not the problem...someone recently asked me if I was going to resent her...I said sharply back the I would ever resent her then I back tracked and said maybe and then I admitted that I already do and have resented her...This makes we want to cry but this is my reality...she then asked how do you take care of her..I take care of her because the common sense side of brain knows I need to hold her, touch her, rock her, feed her, play with her, smile at her, and yes love her...I do love her with every fiber of my being..I think that is why I am soooo pissed....I wanted the world for my girl and now I have to look at it through rose colored glasses..

I am sure people are thinking just get over yourself...maybe in time I will....

Monday, August 10, 2009

Monday!

WOW! I am back to work and it was not so bad!! I started my daycare 3 years ago and when I came back for my 4th year... I have the same kiddos I have started with! holy crap time flies...Some are starting school next week...Maddox handle all the loud noises and even louder play very nicely! She is such a funny girl with lots of smiles and laughs! Max said the funniest thing! at nap I asked if he needed to be covered with his white blanket and he said no I have got my wiener, my tummy, my nipples, and my eyebrows I don't need my white blanket!! he is to much sometimes!

Tonight I made meals for the week...it was a little much...considering I woke up and worked out! I am such a go getter on Mondays...lets see what tomorrow will bring! If you are wondering what I cooked I am a Rachael Ray wanna be and I made her stoup spaghetti and meatballs and spicy chicken and potato stoup..can you say yummo!

Saturday, August 8, 2009

Really!

The day started good but there were some bumps! When you have a child with "special needs" it can be weird to venture in public just for the shear fact that people are STUPID! I mean this in the nicest possible way! I was in Walmart and Max and Maddie were being amazing letting me get all my shopping done. Max of course had to pee and so things were taking a little longer then I wanted...The cashier was nice and talking with Max which is always a plus he likes to talk to strangers! we can talk on this later! so a women comes up and starts staring at Maddox...very intently...I do not think much of it and then it begins! she says "how old is your baby" I say "12 weeks" she says "ohhh 3 months" so I am thinking NO 12 weeks idiot! then she says "she is soooooo small was she premature" I respond "no 6 pounds" "ohhhh" she says...then pauses then says "she really is so small are you sure she is ok" REALLY!!!! she has fat rolls and looks so healthy and cute! I then respond "I am short she is just taking after me" I wanted to yell at her... YES she is small she was born with down syndrome you stupid stupid women...learn to shut up and have tack...not everything you think has to be said! I get very upset because I want to perfect my response before Maddie can realize that they are not being nice...I do not want her to see me get mad or respond in a way that will make her feel uncomfortable.....I want her to have strong self esteem and be proud of the person she will become...She will rewrite the "norm" for Down Syndrome I know it!! Today she batted at a mobile and made contact! that is huge...I mean a huge milestone for my big girl!

Now she sleeps and processes everything she learned today! she is a big girl that is as healthy as she can be!

I love Saturday!

Well today could have not started out more perfect! Maddox is an amazing person (baby) and sleeping through the night! I woke up to Max and Chad playing... with Maximus laughter filling the house...is there anything more perfect...

Yesterday I tried working...I do daycare..I have been doing it for three years...but I am nervous to have my own baby around all the other children...I want to make sure I have enough to give to every child...I am tired and Maddie was very stimulated but she seemed to enjoy the time with the other kiddos...

Went to a BBQ last night with great people and an amazing atmosphere...the food was really really good...it was VERY kid friendly which is always a plus...there was an apple tree that just spontaneously dropped apples and Max and the other kiddos played with apples almost all night...who knew all the things you can play with an apple...making a pretend pie, a tea party eating an apple, and then of course throwing them at each other!! what fun! This guy had a projector screen outside and so we sat in lawn chairs with blankets and watched a pirated copy of Ice Age Dawn of the Dinosaurs! Back to the food..can you say BBQ brisket, beans, jalapeno peppers w/bacon and yummy cake!! back to clean eating Monday!

This is state fair week...the weather is not nice so I am not sure that the demolition derby is in the cards today..but Maximus will be enjoying live with Elmo tomorrow! to be 3 again...Maddox will be enjoying some fresh formula and sleepy sleepy with a little tummy time on the side!

Thursday, August 6, 2009

Ahhh Natural

Today we went to Natural Bridge....it is truly beautiful! the kids played in the water, threw rocks and climbed BIG rocks! Max found a dead mouse and I could hardly pry him away...We had a picnic and played at the playground...they had an old merry-go-round that of course Max loved...I know this is a very dangerous play item but I do remember spending many hours on it!

Max took a nap!! it was amazing! he is such a better 3 year old when he naps...so we had to go to the Water Falls near Casper..He threw more rocks and found a butterfly! Maddox chilled and ate!! she is becoming quite the little piggy! She worked out today and now is working on a pooo!

I have decided not to send Max to preschool yet....I think he is still a bit young..lets hope Max does not kill Maddox with love through out this year...Chad talked me into the p90x a workout thing..I am sure it will sit on the shelf like most other exercise things in the house...Chad thinks this is the ticket to skinny...I mean healthy...what ever it is I hope it is fun...another day another cure all....

Wednesday, August 5, 2009

Sleepy Sleepy!

You would think it would be my 3 month old daughter keeping me up at night..NOOOO it is my 3 year old that will not poop in the potty...he woke up to poop last night 2 am and needed me to watch him while he pooped in a diaper not a toilet...I know this should not surprise me considering he still pees outside...currently we are bribing him to poop in the potty with peanut M&M's and a Nerf ball gun... it is going on 2 months of these items hanging in my bathroom above the toilet..any ideas??

Maddox is 3 months today! she is a big girl..she is rolling on her side and will roll from front to back...She enjoys watching herself in the mirror...her new thing is everything goes in her mouth...it is so funny to watch her try to get those toes in her mouth...last night we went to the rapids on the Platte river...she loved being outside and taking a walk..I know I should not have her in the baby pack...but she loves it!! I hope her legs are not permanently frog legged!! she was only in the pack for about an 1 hour! Max threw rocks in the river and chased birds...we also saw a snake and a mouse...ooohhh what fun!

Saturday, August 1, 2009

Oohh another Day! offended

Today I have to go the other half of a horrible conference..I usaually like this one but it was awful yesterday...I was offended for most of the day by stupid people...one person actually asked what they should do about a Down's Syndrome 2 year old that bites...really...you have a team of people that work with this child...they seem to think that he was doing it out of spite...they laughed at the notion that he may not be able to hear them or maybe understand them because of hearing issues...I turned around and let them know how possible it is this child may not be able to hear...he may not be able to verbalize the way he wants to and that it is developmentally appropriate for him to bite...I hate stupid people who do not research and try to find common ground and help a child... to look at themselves first before blamming a child...did you know medicare is only for poor stupid people...yes this is what people including the teacher were saying in other one of the sessions I attended..It was awful...I am trying to recieve medicare I am trying to pay medical bills, and have a home...really..this is such a stigma to put on other people..PEOPLE DO NOT THINK!!! I do not know everybodies situation..how can we judge...they judge and they probably will go to church this sunday...

Friday, July 31, 2009

Worries!

When you become a parent do ever stop worrying? It is amazing how it starts in pregnancy...am I eating the right things...do I have everything I need to be the perfect parent...you know changing table (waste of $$), do I have the proper crib..are the slats to far apart?? I actually made Chad measure the slats to make sure nothing could happen! You think when they are born at least you will not have to worry because you know they are perfect...you have counted 10 fingers and toes...and they are breathing...but you have to check every couple minutes when you bring them home....then you begin to question the color of your babies poop, to sniffles, to when is a good time to start your child in school..Max is no longer interested in going to school...his short experience was 3 weeks... 4 days per week...a total of 12 days...he tells me he has a belly ache and can not got to school...he is 3! so now I have to wonder do I keep him out of school this coming year...I do not want him to be bored and start to hate school before even gets there! I really never comprehended how stressful parenthood would be...I really thought this would come in the teenage years!

Today I have to go to an early childhood conference..I have gone the last 3 years..it is a good conference I just hate being social with adults! I much prefer a 2 year old! Conversation seems to be more productive with a younger audience! I am frustrated that there is no classes on working with children with special needs...I remember in college I thought I was going to open a preschool for special needs children...now I have a special needs child and I have no clue on what I should be doing...The therapist comes in weekly and I read everything I can get my hands on but still I think is this enough for my little Maddie...she is 11 weeks this week..she is smiling, laughing, and learning how to use her screams to get what she wants...she sat in her bumbo and tried to grab her favorite ball and ring and bring them to her mouth...her nose is still stuffed up..I am not sure she will ever have a clear nose...worries when will it stop!

Thursday, July 30, 2009

Bills oohh Bills!

Today I think we have gotten the last of the medical bills for the birth of the princess Maddox! It is so hard to negotiate payments and have people understand you owe everyone not just there Doctors! I can be thankful that there is no interest...In 21 months we will be payment free!!

I am still having a hard time being the mom of a baby with Down's Syndrome...I guess I have still not grasped the whole unknown of her...I get that you can have these feelings with a "normal baby" but I am just very leary of people who say she is so cute...I have actually had someone say she is not cute but she is kinda of pretty...while I was pregnant with Maddox I had several people labeling her and using derogatory statements to reference her...I think this is why I am so weird about people looking at her or trying to see her...I have prepared my statements back to people with ignorance against my girl but I am still nervous I will freeze up when I need to stand up for her...I just have to remember for the most part people are nice and mean well..and you cannot fix stupid! Remember I am the special parent!