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…

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!)

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...

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!

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…

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...

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!

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…

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!

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!

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...

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!

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…

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!

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!

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...