Be Mine...

Maddie is blowing kisses…it is so sweet…and I am beyond proud of her…there is some prompting…and not every time does she do it…but she is doing it….she is also starting to really dance…and giggle…my Maddie is simply put a bundle of greatness…that is where my heart ache comes from...I know how perfect she is…how funny…how sweet…how loving she is…just because she is my Maddie…what scares me and keeps me up at night…is will we be the only ones that get to know the greatness in her…I haTe when people say well she may not want to date, fall in love, or get married…have children…my question to them is…did you? Because I am sure my Maddie would want the same…I am sure she will want to dance and receive valentines…I am sure she will want to fall in love and enjoy a kiss…but society says different…they say she will live with me or in a residential home…that she will have a babysitter…maybe not around the clock but there will always be someone checking in on her…so again I ask is this what you want for your child? I want more for mine and I mourn the loss of the dream I had for her… I just want so much more for her...I know I do not know her future and I know this can all happen on the off chance that the stars all align…but in all of this I have learned to get real and not give myself or others false hope…because all it does is hurts Maddie… because I am the one she will come to when she has been told no to dance from the boy she thinks is cute…I am the one that will hold her hand when her friends and brother are getting married…I am the one that will be there when she is 30 years old wondering what we will do next….that is our reality…so today I will stop looking into the future and stay with the day to day...it seems much more promising…

samething...different day...

These days I have been feeling blah…I think I am becoming numb to the rituals of everyday life mothering a child born with Down Syndrome…she amazes me most days and has captured my heart…but there is this little voice in the back of my head saying what the f**k…how did this happen…people who do not have a child like mine do not get it…and silly me on thinking they may have the empathy or patience for my up and down moods and emotions…the day in and day out rituals one must perform…everyday whether on “vacation” or at home…is the same thing EVERY DAY…how we begin a meal, how we go to sleep…any transition must be in the sequence in which we do everyday…the constant worrying if I am giving her medications at the times needed…did we complete our therapy routine…where are her glasses...did we get that doctors appointments….is she stricturing or aspirating…why is it she cannot eat any solid foods and she is almost 14 months old…at the 4th of July celebration there were 3 girls that were born with Down Syndrome hanging out together…I am sure I was the only one who noticed and I am sure I am the only one that followed there every move…they cheered for the baseball team…and enjoyed hotdogs and pepsi…it was nice to see what a “normal” life they seemed to be living…they were having a great time together…it made me think of true friendship…something I think we think we know…but we do not…these three girls share something not many do…a life time of stigma…they understand that stigma…they understand the stares…I know the girls names and I have one of the girls numbers maybe soon…I will be ready to have a conversation with one or all of them…to help me understand…to help me be a better parent to Maddie…so she will not have to live with that stigma in her own home…

Maddie n Daddie...

pix are coming....

Pictures of Maddie are coming with her glasses…it is that Chad has been gone for three weeks with the camera…so let me tell you she looks pretty darn cute! I am actually getting use to them on her and think something is missing if she does not have them on… the first day we put them on she just sat back in her chair and took the whole house in…as if she had never seen it before…she studied me intensely and Max she just stared…it is pretty amazing…I cannot wait for her reaction when she sees Chad…I think she really likes them…she does not pull them off to often but I still have a strap on just in case…the first day we had them she threw them out of the stroller in the middle of the street…and to think I almost canceled the appointment because I thought she could see fine…guess I was wrong! In a couple of days Maddie is standing even better she really loves it…but she is locking her knees a bit and is very stiff…and she is beginning to army crawl with her toes and her hips are in the air…so this is VERY different…she has begun practicing the milk sign (or maybe it is bye bye!)…which I am very happy about…currently she just yells at me…like when she wants to be talked to or picked up…currently my name is aaaaagggggggg!

there is a upside!

Since Maddie has been born I have been comparing her to other children…I know better then to do this...but for some reason I always get my hopes and secretly feel better when Maddie has mastered something a “normal” child her age has not…in the beginning she was doing pretty good…as of late I do see her delays…so I have tried not to compare…I even try to eliminate all contact with children in the same age group…just to make sure I am making positive strides with Maddie and my flow of tears…a couple of weeks ago I took care of a little girl the same age as Maddie…I thought I was going to be crazy all week and sad that my baby was not walking, communicating, interacting and well just not as typical of a one year old child…but as the week went on and time has passed…I have to say I am not bummed, crazy or sad…I am relieved that my baby girl is happy, funny, and curious…and do I say smart…she is…and I would not trade her in at this point…maybe when she is a teenager…but not today…she almost very close sat up by herself for her OT and for me…she is finally standing with assistance A LOT of assistance…but she is baring weight on her chubby little legs…I have slowed down her eating but tonight she ate ice cream for the first time and did not throw it up! My Maddie is growing up so fast…her glasses are still not in…and for something I was so upset about having to get for her…I sure am excited and impatient in getting them…

slow down Mama

So Maddie and eating is ridiculous…and very FRUSTRATING…she was progressing well… so I thought…and at lunch yesterday she took one of Max’s chicken stix and began to chew on it…I let her and watched her close…she did so good I even texted Chad…to let him in on a little "first"…she has been starting to refuse baby food...and wants things with something to them…so I thought french fries…McDonald french fries….really is there anything better…I thought what a BIG girl…so we began dinner…she took the french fry began to chew…and then I noticed half of the fry was gone…and then it hit me it was in her mouth then in her throat and there was NO getting it out…she began to cough like she does…she has been so good about being able to get things up…then she started to have a hard time catching her breath…I said to Max get your shoes on we are going to the doctor…of course I tried the upside down shaking her, I tried the beating it out of her…I even tried the Heimlich…nothing worked…she was responsive and pink…but then when she would try to cough it up…she could not and she would turn gray…Max was so great he said lets go Mommy…and we did …I exceeded the speed limit to the hospital just a couple of blocks away…by the time we got there...I was in full speed…and the nurse asked as we walked in the door if we needed help…I started to cry…and they took it from there…she was wheezing but her pulse was good and she was still pink…it was lodged somewhere and you could hear it when she breathed…the doctor came in and ordered a RSV test…he thought maybe it was that…because that is how it sounded…also they could hear it rattling on her left side…not on the normal right side…as the nurse did the RSV test…she violently started to cough and throw up…and there it came a fry…we still did the x-rays to make sure nothing was still in there…she was a trooper and I was thankful I had dear friends to call to help me out…since Chad is gone teaching in 2.5 hrs away! Maddie is ok today…and I have again eliminated all none dissolvable items from her diet…it always seems we move one step ahead with Maddie then 10 steps back…but this time I do not care…she can eat puree foods for life if she is safe and breathing…so more questions for the doctors…how big is her tube after the esophagus surgery…and will this continue for life…making food VERY small and very dissoluble…Maddie wants to chew…it is so cute how she tries…I knew better then to push so hard…this is when we say…slow down mama….

Maddie's good...

Yesterday Maddie had her 1 year evaluation for her IFSP…went well…she has met all of her goals for this year…and next years goals look GREAT!! I just want so much for her to meet them all…and the hard work continues (for Maddie)! it was funny…one of the ladies said ” your long term goal is for Maddie to drive”…”I remember this being very important to you”…it took me back and I thought did I really say this…was this REALLY my most important accomplishment for my daughter…how crazy…I thought how short minded…I did not even correct her on my new feelings...I thought I would keep it in just to remind me that I have came a long way…a long way from not liking Maddie…a long way from not wanting to admit she was my daughter…a long way to have such meaningless goals for my girl…I want my Maddie to be healthy and happy…and no longer do I think about long term things in regards to Maddie…I think tomorrow will be better then today and she is coming along just fine…who cares if she is not walking, talking, or even has NO teeth…she is happy, healthy, and by the time she is going to kindergarten she will be walking, talking and will have cut some teeth…Maddie has been so neat lately…her personality is to die for! In the middle of me talking she will grab my face and kiss me…Maddie has a way of telling me everything is going to be ok…

do they make pink glasses?

Maddie is getting glasses! Yes little glasses…I am not sure about this…I am not sure about anything…why does things like this throw me into a tail spin! This month alone…we have started new medication for life (thyroid) and now glasses for life…when she received her extra chromosome I never would have never guessed so much extra would come with it! this is where I start questioning why! I hate that question...why…it is so not a road that I like to go down…because there are no answers...to most people they will say…oh but she will be cute…it is no biggie…and they are correct…it is no biggie…but in this year in her one year of life…it seems every couple of months something new is added to our daily routine of life…between therapy, doctors, medications and now glasses…we need to fit in being a little princess an just being…soon she will not want to take those awful medications or wear those glasses…all battles for another day…

no worries...

do you remember when little things were a big deal…I remember a time when I worried about everything trivial…today I worry about big things and I only try to worry about big things…that I have some control over….yesterday I was challenged with a women…you know the ones that get all caddy when they do not get what they want…I would have obsessed over this or thought of all the things I should have said or done…not today…today I think about the kiddos in orphanages…the kiddos that cannot live a “normal” life…my baby girl is living a “normal” life…it has taken some time to get this through my thick head…but she is more “normal” then not…she loves, she smiles, she hurts, she laughs, she is funny…and she really is present in her life…she makes decisions in her life…what she will eat…if I get to make her hair pretty…whether she goes in the johnny jumper or plays on the floor…a person actually said to me one time…”I am so glad she is not a blob- I really thought she was going to be a blob that just laid on the floor with no reaction”…REALLY! I just gave my you cannot fix stupid look! LuV that look! and I like my progress…

Phone manners...

Access Pass….very excited about this…access to all Federal National Parks....found this info out from a fellow blogger! I am loving the blogging connection…so I check it all out and read the sites…and have Chad ready to go…I call to verify the documentation they need…here is the conversation…


Woman: Hello National Trails Museum…

Me: Hello I am looking for an access pass… I have a child born with Down Syndrome. I need to verify the documentation you need so my husband is not running all over!

Women: (to someone in the background) do we give out some pass to Down Syndrome people! The women in the background then gets on the phone…bring a SSI card…

Me: My daughter does not receive SSI … I cont…not all people that are born with a disability receive SSI…

Women: (in harsh tone) can she write?

Me: No…

Women: well how old is she?

Me: one year old…

Women: why do you need this pass then?

Me: because I can…

Really…this is all I can say…and so it begins…she does not own this pass…the Federal Government does! I do not get why people that work in public do not get educated…get trained...I am not asking for much…but I worry that someday Maddie will be on the receiving end of this phone call…

someday...

Someday…that is what I always say…someday Maddie will eat, crawl, talk, walk, go to school etc., etc., etc…but then there is a someday…I will look back and miss the days that she did not, eat, crawl, talk, walk, go to school etc., etc., etc…I am just frustrated! That she will only eat Gerber cheetos, that she is on medication that I do not know if it is helping her or just another step to a Endocrinologist in Denver…frustrated that the someday of her making big milestones are so far and few between…that someday she eats on her own then she stops…some days she is interested in sitting up and others she is not…with Max he just took off…he hitched, scooted and crawled…when he walked…he ran…with Maddie it seems so slow and almost backwards…I am frustrated that the doctor did not check her blood count…does he not get I am scared…that we should be on top of her health issues not just wait and see…I hate taking a thyroid medication and waiting to see if in 6 weeks that is what is wrong...or maybe it is not…paging Dr. House! I need someone that wants to help my baby now not the lets see if this works theory! I am also frustrated that her tooth is not there anymore and her gums are showing no signs of teeth…what does the doctor say…he says someday they will come and we will wait and see! If by 17 months no teeth…then we will be concerned…who would have thought a extra little chromosome would have caused so much chaos:)~ So I am eagerly awaiting my someday…