Friday, May 28, 2010

great and not so...

  Lab results came back…Maddie is negative on celiac so the doctor...said we will check it next year! YeAH for that!! then the news I knew…her thyroid is not working properly…so she is on medication for the rest of her life…so know it is time to research everything on this subject…and just handle it…I was ok when the Doctor got on the line to talk with me…because I knew as soon as I got him on the transfer…that her thyroid was not behaving nicely!
  Yesterday was a GrEaTday…we took the kiddos to the park and let the fire fighters spray water them with the fire hose…it was wonderful to see Max smile and play…he has such a great smile…Maddie chilled on my back and took it all in…in the crowd of kiddos I saw a little girl…a cute little girl…with blonde hair…and she appeared to have the same extra chromosome as Maddie…she was so fun to watch…so unique -- but not…she was smiling, running, jumping, laughing she was so perfect…she was just like all the other kids…I loved her…and I cried like a baby…when she got knocked down…I wanted to help her and protect her…but her parents let her be…like every other child there…they encouraged her to get up…and run and laugh…I love to learn from other parents…I love to watch the love that her older brother showed her…he wrapped her up in a towel…and just held her…this was a 12 year old loving on his sister in front of his friends…and all I could think…is someday this will be Maximus loving on his Maddie…

Wednesday, May 26, 2010

I like her...

I received the best compliment I could have ever gotten...I had someone tell me that Maddie looks like me…I am not sure why I was so taken with this statement…but I remember thinking that Maddie and I would not look like each other…then she came out with DARK hair…not blonde like I was expecting…I thought that hope of mother and daughter sharing the same looks/features were dashed…I look very much like my mother and my dad always tells me how I remind him of her…and my looks and gestures are very much like hers…this person even commented that she also has the same “f” you look…I like that she will be my little shadow…last night she got all ready for bed…and Max decided to take a shower…so Maddie squealed an threw herself almost out of my arms…like she does when she wants something…and just had to take a bath…very funny how she is so different then I expected…how she is so much like me and very similar to Max when he was this age…she is becoming the daughter I have always wanted…and I like that…

Tuesday, May 25, 2010

YeAh for milestones...

Maddie had a HUGE milestone day yesterday!! after 3 shots, a rolled vain and blood taken…she signed *more*…when she was eating a snack…and then when we were playing...YEAH for the MaDDIE…she clapped...she is my big girl…it is so darn cute we say “yeah for Maddie”...and she smiles from ear to ear…and claps…and today she rolled to her johnny jumper squealed....I picked her up and asked if she wanted to jump...she tried to jump out of my hands...I think that was a BIG fAt YES!! to cute!

Monday, May 24, 2010

not sure...

“she wont know any better”…really…these 5 words are as offensive as the “R” word…I am always surprised at who says those words to me…I am surprised because it usually is someone that is educated…I always give the same disappointed look…and I am quick to tell them…that it could not be farther from the truth…. I have read articles of kiddos born with Down Syndrome that they have written on there own and that they have experienced explaining how it feels to hear these words… or how it feels if they are standing there when the “R” word is used…I choose not to watch the ABC “what would you do”…I was not sure what the point was…I am a mother of that person…I think a big “F” you would be said to them…not pretty I know…but I am not PC…I do know that the longer I have thought about the judgments about my daughter…I have realized I must equip HER with the tools and words…to do the right thing FOR HER! not the right thing for me…so I have not figured out the words are yet or a plan...I guess I will know when the time comes…
today Maddie went to the doctor…for her “one” year old check up…with Max I was excited to see how much he grew…for Maddie I am nervous of the results… we will have the results for her thyroid and possible celiac by the end of this week…fingers crossed…

Friday, May 21, 2010

PreTTy in PiNK...

HUGE steps towards independence in my home!! Last night Maddie went to sleep in her own room! and Max slept in his own bed! DELIGHT!! It has been 4 years since Chad and I have NOT had a child in our bed…at one point I was sleeping with Maddie and Chad was sleeping with Max…in separate rooms and beds…so the decision was made and we followed through with it…it was great…no fits…hardly any tears…even more wonderful I got to finally buy a cute little bed and cute pictures and cute curtains for Maddie’s room…before Maddie was diagnosed with Down Syndrome I did a little nursery…and after her diagnosis I bought nothing for her…I even barrowed a car seat from a friend…I just was so scared that Maddie was not going to come home with us from the hospital…the diagnosis was enough…I did not a whole bunch of pink around reminding me of what could have been…so now…I have a prima grin! It is all pink and sooo CuTE! I love it…now I am looking for cute shoes for my little princess…

Wednesday, May 19, 2010

Maddie do...

I have a more positive outlook then I have ever had regarding Maddie…but fear seems to creep in…she had a huge milestone yesterday… she fed herself…after her OT had her doing it...she did it at dinner...it was so AMAZING…not just once but many times…I am not quick to say she has mastered it…or even hopeful that she will continue to do it on a regular basis…and then I ask myself why…why not expect that of her…my answer is fear…that she will not do it again…or she will start being behind in her milestones and achievements…I know how import everything is to Maddie…I know that if I want her to be independent and drive…she must be able to master things...small things…but when it comes to Maddie…everything is big…everything is celebrated…I like that…I just fear that I do not do enough…that she will be behind...or not have the most fulfilled life because I am tired…or I am selfish…patience has never been a strong trait of mine…I am finding that is what I need most of is…patience…and the will not to give in to Maddie…the will to say to Maddie …. Maddie do it…not Mommy…even with feeding herself…today she got lazy and wanted me to feed her…so she squealed… she yelled…she whimpered…she stuck her bottom lip out…she cried…and just opened her mouth for me to do it…it took everything I had to sit there and just smile and say Maddie do…I just know this is the beginning of some big times when I will not be able to give in…not be able to do it for her…and it breaks my heart…I want to give her everything...and I want her to feel no hurt…no want…no discomfort…and I know this is all stemming from a small bite…but reality is that it is a HUGE step towards EVERYTHING for my Maddie…and how I will have to push her…to encourage her and remind her that she can do anything…if she is willing to put in the effort…and if I am willing to step back and let her learn…I know I need to be the role model…it is just so hard to know that I have to be perfect…that I have to be 100%...because I only get one chance with Maddie…time is progress when it comes to my little girl…with Max I know I can make up for it…if we skip a few steps along the way…but I know that Maddie must crawl before she can walk…and that is difficult to wrap my head around…I just hate the thought of letting her down…no worries or pressure…NOT :)

Wednesday, May 12, 2010

snow sucks...

Maddie is sucking her thumb…everything I have done to prevent this…is well for nothing! So yes she is a pacifier and thumb sucker! Double the TROUBLE!! I am not sure why I choose this of all things to obsess about…I am going to admit something that is going to sound VERY bad…and please do not take offense to it…it seems with Maddie I think that if I let her do things such as suck a thumb, stay on the bottle to long, etc…she will never unlearn or cope…example…we always had a family bed with Max and with Maddie one of my first thoughts was… we cannot do this…she will sleep with us forever! Turns out she has her own space in the bed she hates cuddling and she loves to sing herself asleep…so with the thumb sucking I really thought if I let her suck her thumb she will suck it FOREVER…not for just a few years… forever…I seem to think she will be in an infant or in a child like state forever….of course I know this is not the case…and I am being silly…so this one bit me in the butt...Today last year was the longest day of my life…and the hardest…Chad did not want to come home...today was the day we took off to Denver to have Maddie…today I am anxious and on the edge of crying...I know tomorrow will be better…I am surprised at how much emotion it takes to have a Maddie…with all of her greatness…there is so much wonder and just wait and see…something that I have to get used to among other things…outside it is snowing and gloomy…in May …I think it is telling me today is the last day you will cry about the pregnancy and delivery of Maddie that it is time to wash away the fear…that her 1st birthday is the beginning of me celebrating her life and not dwelling on her differences…and to see the sunshine and maybe even smile…

Monday, May 10, 2010

who knew...

Thinking…that is what I have been doing a lot of lately…some thoughts make me sick…others make me smile…Maddie is fast approaching 1 years old…I am having a hard time concentrating on other things…I keep thinking of the events that preceded her arrival…I was so scared, alone, and panicked…as a young women I remember wanting and yearning for a little girl…a little minnie me…someone to share my Saturdays with…shopping talking…and laughing…I wanted a little girl to watch musicals and someone to hang out with when Chad and Max went hunting or fishing…for a short time after the diagnosis of Maddie…I thought I would not have my pal my best friend…in a daughter…shame on me…for being so selfish in thinking because she was not my “normal” she could not be my friend…shame on me for being so afraid of the unknown…because one year later…I look at her and she makes me smile…she makes me laugh…I cannot wait for her to awake after a sleep...so I can see her beautiful smile….I love her personality…and we already have the nicest talks! Maddie with my luck will want to hunt and fish! I suppose I will be ok with that…I figure now that we have survived a life altering diagnosis I can surly wrap my head around a daughter that camps!

Thursday, May 6, 2010

me cynical....nooooo

think before I speak…tact….assertiveness …bitchy…blunt…things I have been working on…in addition to being ok with the whole triple crown…and not comparing Maddie to other children…so with that I went to a birthday party…for a little girl…and it was a lovely party…but it was really to much for me at one time! with my whole life and attitude change…Maddie was of course adorable…and so why is it that I felt the need to tell a women I have not seen in 20 years…that my baby was born with Down Syndrome…because that just lets the floods gates open for her story of the friend of a friend that knows someone with Down Syndrome! wont make that mistake again…and I love the person…with the head cocked slightly with a hint of ahhh in her tone…and the staple comment of…because of Maddie…Max will be compassionate, sensitive, and caring…REALLY…because I like to think he would have been all those things…because I am an amazing mom and Chad shows those traits to all of us on a daily basis! I know that Down Syndrome has yet to make me more compassionate, sensitive or caring…the term “Down Syndrome” has made me…angry, selfish, pissed…and cynical…I promise I am staying positive! REALLY

Tuesday, May 4, 2010

what a year can do....

One year ago…what a different place I was in…so depressed…scared…sad…anxious…this is when I went on bed rest…this is when the reality of having Maddie came…no longer was it a matter of months…it was a matter of can we keep off labor just a few more days…it was funny I went in for them to check her movement…and I knew I had been laboring for a couple of days I knew the pills were no longer working…but I was determined and scared to make it till May 13…I went in and when the nurse felt the contractions minutes apart…she just looked at me…I said to her you do not have to tell the doctor…I so did not want my journey of Maddie to begin…then the doctor came in with a HUGE smile and laughed and said I heard that! she slowed the contractions…and sent me home…later that afternoon I returned to the hospital…again they slowed them down and I went home…held Max tight and packed! of course I packed everything I did not need…and Chad would not come home early he to was scared…these days before Maddie…were some of the craziest, saddest days I have ever had…to have a child and not know if you will be brining that child home is stressful to say the least…to know that we can not change anything or fix anything…just let doctors so there jobs…we did not know if we would have to grow the tube attaching the esophagus to the stomach or if it would ever be able to attached…we did not know if she had a stomach…we did not know if she had a structure/fistula between her trachea and esophagus…we did not know if her heart was healthy…we did not know if she had a butt hole…very common with what Maddie was diagnosed for…all we knew was that she was healthier in my belly then she was in this world and that she had a third chromosome…the doctors fixed my little girl…and she is healthy today…she is scooting…eating raviolis…and she is beautiful…I love her today…and it took a long time for me to say that…the other day I realized if they could take away the third chromosome would I let them…and today I would say no…I would take away the hurt, pain, % of illness…but I would not take away who she is…she is Maddox Rose and she was born with Down Syndrome…and she cannot be changed…and that is ok….

Sunday, May 2, 2010

Maddie luvs chocolate!

he loves me…he loves me not…do you remember this game? find a pretty flower and pluck the petals one by one…while asking a VERY important question…when I was 15 years olds it was if a boy liked me! today it is will Maddie be ok…or maybe a better question is will I be ok…recent questions I have decided to let go of are as follows….will Maddox get sick and have to go to the hospital or will she stay healthy…will she stricture or will she beat the odds…will she drive or will she live with us forever…will she get married…want to have a baby or want to adopt a baby…will she hurt and cry…all things I cannot control…all things that I could ask the same of Maximus…so I have decided to put the uncontrollable questions behind me and celebrate that today Maddie wore a pink tutu swimsuit…that in 10 days she will be one years old…that I survived this first year and the world did not end…even though her one and only tooth has disappeared I will be at peace that it will return eventually! I am at awe that my big girl is scooting on her shoulder and head forward to get something not just rolling….I am celebrating that Maddie is now done with formula…that my little girl LOVES mac-n-cheese! and I have to hide veggies in it already! that she LOVES chocolate licorice! it really is helping with her chewing motion! did I mention she also LOVES chocolate cheerios…my goal in the next 10 days is to make sure she is slurping out of a honey bear…and resisting the urge to put chocolate milk in it! so now I will begin plucking a new pretty pink flower…with better more important questions to be asked…chocolate or strawberry birthday cake…