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!

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!

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…

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!

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!

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!

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…

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…

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”…

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!

She is...

Yesterday I described Maddox as happy and easy going then I said…”that is so cliché” …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!!