Monday, May 30, 2011

DiRT...








Saturday, May 28, 2011

ease up...mama

I can do it...that is what Maddie is telling me...Maddie has become so independent...as she gains more steps across the floor...it seems other things have just fallen into place...the other day when discussing Maddie's assessment...one of the questions was does Maddie self feed...I said she can...but I do not let her...I dont because I am scared that she will obstruct her airway...but by me not letting her...meal time becomes a horrible experience for the both of us...so last week I decided to let go of my need to control...EVERYTHING about Maddie...I do I try to control what she does, who she interacts with, what she puts in her mouth...everything...and she is telling me to stop...so I gave her the fork...and she ate...and ate...no books, no games, no singing, no nothing just food in mouth...no obstructed airway...I have began letting Maddie snack...
fine motor
check out my tooth!
I know it does not seem like a big deal...but again that requires more self reliance...and me letting go of my fears...I have been so caught up for so long on what she MAY not be able to do...I have prevented her from doing things she clearly can do...so I am a big fan of getting dirty...but not for Maddie...I like her clean...and cute...but again I let this go...last week Maddie played in puddles, shaving cream, paint and mashed potatoes...slowly I am letting Maddie do it...and stepping back and letting her be a kid...
painting...I like to eat it to...

I thought I would love it...
Maddie has gotten so stink'n big and it seems it has happened over night....Maddie is a big girl and she is telling her over bearing mama to step back! so for all my complaining about Maddie not walking, talking and self eating...I am admitting I miss my baby...my little girl that loved to cuddle and needed her mom...now Maddie is go go go...and that is a big high five for my girl...

Monday, May 23, 2011

it's ok...

cute swimmy
I have been in Holland for what seems like a life time....but I have returned home...it was a long trip...unexpected but interesting...overall exhausting...but I know I would have not changed it for anything..."Holland" is a nice place to visit...but I am glad that I am back in the wild west! some use the idea of explaining the diagnosis of Down Syndrome to planning a vacation to Italy and en route learning you are going to Holland...it is still pretty in Holland but it is just not what you expected...I remember Chad coming home from school one day and telling me this story...his principal has a love for people with Down Syndrome...he said all the "right"things to Chad...he said congratulations, I cannot wait to meet her, can I babysit! and the story of going to Holland...I remember thinking that it is truly a great description of my feelings at that moment...last night I was faced with the same scenario...a gal said that a friend of hers was having a baby born with Down Syndrome...and there it was my chance to practice...my chance to teach...and the words effortlessly flowed out of my mouth...I said wow that is great...please let her know about the wonderful blogging community to help her through this time...she will find comfort, she will find peace...and most important she will find that her "trip" has been traveled countless times....and she is not alone...by seeing the wealth of knowledge and acceptance in our Ds community...and that was it...then I looked at her...and said...blogging saved my life...and now my little girl is walking around the swimming pool in a red polka dot swimsuit...and we are just fine...this conversation happened 5 minutes into a birthday party...Maddie climbed up the froggy slide...all by herself...she slid down with a huge smile...she ate pizza, cake and sang Happy Birthday...Maddie style...Maddie was included...she belonged...everything is ok...I know because my reaction was positive...no longer scared...I am ok...I understand where these people are at...I empathise with them...I understand the grieving that has to happen to get to here...Maddie walked...she walked all night long...she explored the whole pool...the sense of "normal" washed over me...and all my worries seemed to dim...my trip was long...but today the detour was the BEST thing that has ever happened in my life...so if your planning a trip...and your plane goes the "wrong" direction...embrace it...because you will come home...

Saturday, May 21, 2011

i was wrong...

you could say a little mama guilt...but that is nothing new! so I really was convinced that Maddie no longer needed glasses...that she was somehow cured of not so good vision...all because when Max had his 5 year old wellness check the ped said that Max will probably need to see the eye doctor in about a year or so...then Chad asked something about his brain growing and relieving some kind of pressure on the optic nerve and possibly Max would not need glasses...so then it hit me Maddie's brain was growing and since she was the master of her pincher grip and seems to find every speck of dirt or crumb on the floor that she no longer needed her glasses...so instead of fighting with her on wearing her glasses...I told myself over and over again that she was just telling me she no longer needed them...that she knew her body and she had been fixed! well not so much...her eyes are worse...one eye could be possibly be turning in...and she has to wear her glasses ALL THE TIME!! NOOOOOOO...last year I did not want the glasses because I just could not handle one more accessories -one more to do...this year it is out of pure selfishness...the hassle of keeping them on her precious face...so I got 2 pair of glasses so she has a choice of which one she wants to wear...and I am making a promise that I will somehow make her wear them...anything not to have surgery...and she does look cute in them...and yes I am trying to talk myself out of the real reason I am not a fan of the glasses...they draw attention to Maddie...when she does not have her glasses on...I get less questions about Maddie...I am not ashamed of her...I just get sick of questions, stares, and sighs...that is all...for a mom that is looking to be "normal" there is no need to draw attention to us...I really think the glasses screams Down Syndrome...yes I know this horrible...yes I know I should be over it...but again the just one more thing...adds up...

Wednesday, May 18, 2011

looking forward...

I am REALLY excited for Maddie to walk consistently…I have to admit it is for mostly selfish reasons…and I really underestimated the amount of time it would take for her to do this task…Maddie has been cruising for about 3 or 4 months now…and she is still not walking close to 100% of the time…I am SO not complaining…and I am SO very proud of her…she is taking about 5 steps a fall and then a get back up and try again…it is VERY cool to watch and I really get excited with every step she takes…I never get tired of watching her…I never get tired of kneeling down and catching her…and I never get tired of watching the excitement run through her body when she gets to her destination…Maddie walks with a confidence almost a swagger…she knows what she wants and where she is going…my selfishness comes from clothing and accessories…I really want to dress her in pretty clothes and shoes that will not fill up with dirt as quickly as they do with her crawling…and in dresses she has to bear crawl because the dress gets in the way… I also look forward to holding her hand and walking anywhere… I cannot wait to see her and Max hand and hand together….I am looking forward to the day she walks away from me…and in the moment of panic-thinking where did she go…only to turn around and see her giggling….I look forward to her walking to a flower and squatting down, touching it, smelling it, eating it…and then me swiping her mouth hoping she did not choke! So many things to look forward to…now that Maddie is the BIG 2 I feel like she can handle more things…or maybe I am just talking about myself-again!

Monday, May 16, 2011

Birthday Girl...2 years old

cake pops...yikes!

they are just my size...

self feeding!

Happy Birthday Maddie...

Wednesday, May 11, 2011

bump goes the shadow...

Things that go bump in the night….the “things” should not be your own emotional roller coaster of having a perfectly enhanced child….but I am what you would call a drama queen….so after 2 years I know I need not to get so worked up…so nervous…but I am…the memories of having Maddie come flooding back…the weather seems to be the same as the days prior to her arrival…but I look over and see the little girl I was so afraid of meeting…she turned out to be more then I could have ever bargained for…no one can tell you that…when you are in the throws of depression and denial...no one can tell you everything is going to be ok…you just have to get there…somehow…and I am not sure how I got to today...but I am glad I am still here…this morning Maddie woke up with her eyes sealed shut from allergies…it triggered the tears…I have been on the verge this whole week…just nervous about her birthday I suppose…learning how to celebrate her…and not being so scared of our future…Maddie is also teething…so she is VERY emotional…she cries and cries…and it is a reminder that I do not know what to do for her…she has always been so independent and able to self soothe…when she was a baby…I was so late in emotionally attaching to her…I never learned her…I am not waking up remembering the labor…the delivery…or even the NICU…it is being released from the hospital without her...that is what goes bump…that has me so emotional…it seems to pop into my everyday thoughts…how I cried and cried -sobbed really…as we were checking into the Ronald McDonald house…all I could do was sit there like a lump with nothing left to give…it was me and Chad’s anniversary…I remember him saying we should go to dinner…or something…because it was or anniversary…so I went and I could tell Chad did not know what to do…what to say…I cried through the whole dinner…thinking that my child was in the hospital and at that time we did not know for how long, for exactly what…and I was not being able to bond with her or be her mom…a nurse told me that it was not important to bond with your child…I came back that night beside myself…and thinking the nurses knew my child better then me…at that point I wanted Max…I wanted the child I knew could fill me up with some much needed assurance…I know that is not his job…but it was the only thing that kept Chad and I sane during Maddie’s hospital stay…was spunky Max…today Maddie reminds me that everything is going to be ok…that I can relax and just put the whole thing behind me…I put her favorite Baby Einstein on and she rocked to it….she danced and smiled…for a short amount of time anyway…before entering back into the I am in pain…please do something…so her birthday is on Friday…and I am GOING to look forward to making her cake pops with sprinkles…and have a great time…learning to celebrate her…learning how to better mother her…Maddie is my little shadow…a shadow that I need not be afraid of….

Tuesday, May 10, 2011

no longer the king...

I am a huge sports fan…love the Green Bay Packers…just do…since football is out! basketball is in….I enjoy watching them…I understand it is just a game -a pastime…nothing more…I do not idolize the players and will teach my kids to have better heroes then ones on a playing field…considering you really do not know if they are “good guys” or not…so the other day when LaBron James used the “r” word…I thought wow…this is going to bring the people who say “just get over it” out! I knew the message boards would be full of the people saying...what is the big deal?...sure enough on ESPN comment boards...it was a prime example of why I should not read the comments…why this is a members only club…if you do not love someone that has a intellectual disability then you do not understand the power and degradation of the “r” word…when I was discussing it with Chad…Max asked the question…what is the “r” word…clearly I was not ready for this conversation with him…he is 5…I would rather talk about how sex works then this topic…but we had it…we explained what it is…how it hurts…and how it is not to be used…that we do it for human kind…not just for Maddie…but for anyone…we also talked about what to do if someone uses it in front of him…how he should handle it…what he could say…to much for a 5 year old… maybe…but he is Maddie’s big brother so he has already had to grow up to fast…

Monday, May 9, 2011

feeding update...

Dilation…to most not a big deal…or wonder what is that? to Maddie’s and me…it has made eating time survivable…dilation for Maddie is a stretching of the esophagus….the other day Chad said…Kim you do realize it is not normal for someone to eat for an hour…I responded- but it is our normal…the dilation that Maddie had the last time she had a constricted airway…has allowed her to eat our food…no more baby food…she is now eating shredded (pre-chewed like) smaller then a cheerio…steak, pork chop, noodles, rice, broccoli flower, anything that is easily mashed…so most food is fair game…this is a huge step for Maddie and has made for a happier girl…since her dilation March 2nd we have only had one choking incident…pre-dilation it was at every meal every day…she has also begun to chew and swallow…she really seems to be getting the hang of what her mouth is supposed to do! Maddie can now chew a whole cheeto and cheerio…no sucking…just chewing…Maddie has also began to have real interest in self feeding…yesterday she was able to grab pieces of steak and put them in her mouth! huge steps for my little girl….so all that is left is the medications…I was so eager to get her off…now I ask why…why be in such a hurry…they are helping…they are doing there job…no side effects -yet…so the worry has passed…all we need now is teeth…

Friday, May 6, 2011

cowboys...

Lots of aisles…lots of lines...lots of people smelling way to sweet! Llama Llama Mad at Mama goes through my head--ALOT …so on Wednesday  while I was standing in a line…watching my items going down the belt one by one…I look up and noticed a familiar young man with Ds checking out …I of course stare…because that is what I do…and if I would have saw him earlier I would have followed him...because he goes to Walmart every Wednesday night around 6 pm…it is his routine I have figured out…and it is now mine...I like him…I just have not had the balls to walk up to him and tell him…how much he means to me…because I do not know his name…and he does not know I exist…this is how I am dealing with my daughter being born with Ds and eventually being his age…call it crazy…but it is what it is…I then turn to see who is behind him in line…as if to protect him…from the ugly…and sure enough there he is a older cowboy…not good…because I know what is coming next…I see his face…the posturing…the comments to his wife…the why are they in front of me look…so I have noticed that when I get into a situation that a slur could be used...I hold my breath...almost in panic…I prepare myself…I try not to listen… but I do…because I have to…I prepare myself on what I want to say and the look I want them to see…so the other night…as I was staring at the young man as he paid and moved on with his evening…I listen…and I watch…and hoped for a good surprise…a little something to make me think the world is still good…but the older gentleman…just had to comment about my friend to the cashier…not a real bad comment…but a comment that puzzled me...he said --could he not have bought a book….REALLY a book the guy does not need food he probably has a limited income…and he is a young man…I was impressed there was fruits and veggies in his basket…he is a 20 something….he deserves to buy what he wishes -when he wishes…with no comment…as the cowboy said this to the cashier…he never for a moment thought...does this woman love someone with Ds…does this women have a story…no he assumed he was right in his comment and his attitude…sometimes old cowboys should learn to just ride off in the sunset very very quietly…

Monday, May 2, 2011

see me slide....

So I admit I have been a little down about Maddie and her development…she is turning two in 2 weeks and her development is not typical…then today her case worker came and she asked if there was anything I was concerned about…anything I thought we needed to work on...I said "NO"…I like to lie...I am not sure why I do...but I just said Maddie is doing amazing....then I paused and thought here I am coming to anyone who listen in bloggo land but I will not tell the person that could help…but I think I have good reason...because I know that I am being unrealistic…I know I am being petty and selfish…and I know I am not looking at the big picture…I do get it…but I think I am allowed to be sad sometimes and I do think I am allowed to be jealous…yep I said it…jealous…that my kiddo is not doing the moves to the chicken dance -- yet…but she is climbing up a 4ft slide and sliding down...all by herself…and that to me is HUGE! a milestone…my Maddie is so independent…so confident…I am not sure why I question her…she always seems to show me...that she is a SuPErSTar!