Monday, January 31, 2011

truth is tough...

My husbands tells me that debating openly and  honestly is dead in this country and that is why when I speak my presumed truth or am honest with people they hush me and say…”you never know”…I have a hard time with this…I am not a fan of living in a la la land…that the world is full of only the beautiful and well adjusted…because my world is just not that way…I used to live in a fairy tale…well into my 20’s…then my refrigerator broke and my Dad would not fix it, pay for it…or buy me a new one…that was the first time I can remember him telling me NO and to handle things on my own…slowly I learned how to take care of myself…I screwed up A-LOT! I hurt people…I hurt myself…but I was always honest…I recall people saying I was just being Kim and that I was not graced with tact…which with age I can say I have mastered most of the time…one of the hardest things I ever did was start living for me…I married the first time young…to young and with time I grew up and found I was not happy or content…this is a part of my life I hide…but I do not regret…I learned never to settle…I also learned to be independent…so as I moved out of that situation I honestly knew it was the right decision for me…not everyone was a fan of this and I lost friendships…so as I entered my 30’s and got married and had Max…again I was in a fantasy of what parenthood should look like…how my child was going to to be perfect! soon my truth came creeping in and I realized I knew nothing about being a parent…I could not control anything…and then Maddie happened…WOWSA was this the craziest, humbling-est, experience of my life so far…and where my journey with being honest and truthful is in question…it seems that the world can take my honesty in divorce, marriage or raising a typical child…but when it comes to a child born with an extra chromosome the answer is “you never know”…”why are you looking so far in the future?”, “why are you not just enjoying the present time”…I do not get the luxury of living in the “you never know” world with Maddie…I have to know…I have to be real with her milestones, her education and her health…to say to Maddie you will be President of the US one day…well that is just not true…she will not be president…she will not be a doctor…she just wont…and that is ok…but as a parent it is heart breaking…it is hard to look at my dearest girl and say I am not sure we can check that off the bucket list…that she may not get married or have kids…that she may never find true love or have mind blowing sex…this is the honest truth of being me…it is sad, it is hard, and it is frustrating….but it is truth and there is no debate in that….

Monday, January 24, 2011

good balance...

Maddie’s hugs are unbelievable…the way she pulls you in and clasps her hands around your neck…it is like true love all bottled up into one moment…Maddie has more and more personality showing through…she likes to wiggle her head with attitude and she talks smack with her Maddie talk…she has a swagger to her that I have never seen in a child…2 years ago I questioned if I was going to keep her…I questioned if I was going to keep myself…and today I cannot imagine this world with out Maddie…when you think about the universe and how it spins and how we are all in balance…and my decision that I held in my hands to kill Maddie…would have put the universe off balance…mine and my families universe anyway…yesterday Chad and I looked at each other with such peace watching our children play together and love…I am amazed in what Maddie has shown me in 20 short months…everything is ok…and well balanced for my Libra soul…

Saturday, January 22, 2011

Maddie rocks the chair...

long video...but ooohh sooo cute...

Thursday, January 20, 2011

just...humans

Down Syndrome babies are not disappearing via +15 facebook link…why do I let things like this get to me…first thing…my child is not a maybe so … maybe not child -aka abortion…she is a human…and second Down Syndrome babies are people, humans…why does society get so caught up in labels and categories…why cant my child  just be a human—just a person…why cant my child just be…why does she have to be observed and assessed regularly…why is she stared at and put in a box…a box of expectations that the person that is looking at her gives her…you know the person that has preconceived ideas of what a Down Syndrome person looks like, talks like, acts like…you know…today I am tired of Down Syndrome…I am tired of having to change EVERYTHING about me to accept my daughter…I used to fly by the seat of my pants and say things that were off color…now I cannot…I cannot go back to being ignorant, selfish and foolish…I have to be knowledgeable and thick skinned…I have to educate myself on things that I never thought I could...I have to be the expert in Maddie’s growth, health, education, and all around well being…how did this happen…I was the person that read Cosmopolitan and Glamour magazines and thought camping was staying at a one star hotel…and now I am defensive and scared…hotel stays are for hospital appointments and magazines turned into the internet and reading everything I can about Ds and everything that is associated with Ds…I know I am supposed to be thankful…I know I am supposed to be over it…I have made progress HUGE progress but today is just one of those days…

Friday, January 14, 2011

precursor?

Maddie is showing some strange or maybe scary behavior…there are times she does not recognize me…I know I have mentioned this before…but in the mornings when she is waking up and I get there a tad early she does not see me or hear me…she will look at me with the look of distance and confusion…but she is awake and coherent…last night she was playing with her brother…and I was cleaning the house…it got very quiet so I went to check on the kiddos…and I found Max cuddled in bed watching TV and Maddie just sitting in the hallway staring into the bathroom…I talked with her a minute and just thought she was thinking about a bath…I went back to check on her and she was still in the same position and sitting watching into the bathroom…I watched her for more then 20 minutes just sitting by herself looking at something in our bathroom…this is not “normal”…it is times like this that I am at lost for words and actions…I am not sure where she goes but I want her to be in the moment…because it scares me…as I have watched and observed other kiddos they do not loose themselves like Maddie…she seems to wonder…not physically but mentally…I am scared this is a precursor to something unknown…or maybe it is just my Maddie…

Tuesday, January 11, 2011

forgotten smiles

as I have gone through this journey...I have realized I have forgotten how much I love smiles...I have been so caught up in what I have thought I have "lost"...which is tiring in itself...this morning I woke up tired and grumpy so in the shower I forced myself to smile...I REALLY like the book Eat Pray Love one of the guru's told Liz to smile from every organ in her body...even her liver...so I have been trying it lately...just smiling to smile...I figure it can't hurt! so with my new addiction to smiling I have stepped back and taken inventory of what I have in front of me...one of the things I love to do is watch my children play...I can watch them for hours playing interacting and exploring there own person...I have watched Max grow into a wonderful boy that is eager for life and full of wonder...today in school they were studying penguins so he dressed like a penguin with layers of clothing to represent blubber...as he waddled to school all I could do was smile...Maddie has discovered sitting on chairs all by herself...when she crawls over to the chair stands up and then sits down the pleasure in her eyes...is unmistakable with pure joy and accomplishment...nothing can take the place of the smile of your own child...I love to watch my kiddos...I am so thankful that they are happy and content in there world...even though this has been a tough couple of years I know that I can continue to make this a happy and safe home...for my kiddos to learn and grow...they truly are my best accomplishment...

Monday, January 10, 2011

off the mark...

Today was one of those weird days…Maddie had her first speech therapy session and I was just off…the therapist is good…it was me…she was giving examples on things to work on with Maddie and I realized how far we have to go…she said that Maddie needs patterns to help start communication…and that is why she is all over the place…I am not sure why this struck me and it did not offend me…it just made me sad…she even said “do you understand”…because I was not responding to her…I am sure I came off aloof…but I was just caught up in the need of “patterns”…why you ask…because I have always thought the best way to teach a child is through exploratory play…give the child the tools and let them come up with the best way for them…through trial and error…thought and process…not pattern…not over and over the same thing the same way…it seems boring to me and mundane…I know she knows best and it makes sense…but I want to raise Maddie like Max…I want her to get it and be eager to learn and explore…to get up and fall down…Maddie watches and observes and then she will try it…but not over and over again…just enough  and then she is off to the next thing…so as Maddie was working on ball play of putting the ball in the hole and watching it go in circles…she decided she was done with the balls and got a Mr. Potato head ear…and I thought she would put it in her mouth but she didn’t she took it back to the ball play…put it in the hole and helped it down the ramp…the therapist was very pleased with this…and so was I…I just think letting kiddos do it there way is better…but all I have read and experienced with Maddie I know prompts are very important…even though I am not a fan of them…I know that I need to make patterns with Maddie…I just do not want  Maddie to be “typical” or “textbook”…I just want Maddie to be different then what they have seen before…I always want people to say Maddie is amazing how she is so “normal”….and shows no signs of delay... 

Friday, January 7, 2011

tisk tisk...

one of the many stereo types that I cannot stand is…”people with downs will not know better” REALLY…I was told this again  (yes they used downs that a whole other peive)…and this time I responded very nicely…Yes they do and so will Maddie…she will know she was born with Down Syndrome and what it means...she will be fully aware of what the “r” word means…she will know that she is behind the "norm"……she knows…Maddie already gets it…her brain works just fine...she just has to work harder and practice more…but Maddie and people in general that carry an extra chromosome get it…so this got me thinking why? why do people think this…do people that were born with Down Syndrome not breathe, not respond to others or things, do they not hear, talk, and have a conversation with you…then why would you think they do not understand…why would you think that they do not hurt just like you…Maddie will never know life without an extra chromosome…she will never know life without multiple medications that help keep her alive…and she will never know life without societies limitations on her…but to say she does not get it or does not know better…that is just foolish…

Thursday, January 6, 2011

family hugs...

When we came home from having Maddie in Denver…one of the first things we did was bring her to visit her pediatrician…he is Max’s doctor and we love him...when I called him to tell him about Maddie and asked if would still see her...he was amazing --he said that he had not heard of TEF/EA but he would do research and talk with the doctors in Denver…he assured me that he would work with our team of people in Denver to help our little girl…he has followed through...he gets updates from the doctors in Denver and he updates them regularly…when he has a question he consults them…he is amazing…even more amazing is what he said to Chad and I the first time he saw us…he asked “How are you two?” and we responded “fine”…he then stated that the divorce rate for parents with special needs can be 85% to 90% higher then the average…so he said to us straight up…that we need to be strong- and work together to raise Maddie…that we need to be healthy and do what we can to stay strong…every time we see him in and around our town or at the office…he always asks us how we are…and he means it…so last night I noticed anytime I touch Chad…Maddie scurries to be with us…she begs to come and sit with us…or do a family hug...Max has always loved family hugs…but Maddie is different…she really seems to have a sense of security in Chad and I together…when I kiss Chad…she kisses Chad…and when he is holding her and I touch him she just melts in to the both of us…Maddie has made our marriage stronger…when I had Maddie I was scared and frustrated…Chad was strong and calm…it took Chad about 12 hours to come to loving, accepting and being excited to be Maddie’s dad…even though it took me a bit longer…he stuck by me and just held my hand…I can see why the divorce rate is higher…with all the medical issues, financial burdens and just the stress of what if’s…I am thankful someone just put the percentage out there…

Wednesday, January 5, 2011

its ok...

compare is not something I am suppose to do…I get that…and I cannot say I am surprised…I cannot say I am sad…I am just kind of melancholy…and accepting that this is how it is going to be…he caught her and now passed her…yep the 8 month old that I take care of is…crawling, pulling to stand and now walking with assistance…he is eating ‘big kid” food…and he even chews…yes he picks up food puts it to his mouth, chews it and swallows with no choking or drama…Maddie is choking about once a day or more and is still eating pureed #2 gerber foods or food that I puree…I had a  wonderful 2 week vacation during Christmas so I did not see the little guy…I figured he would be crawling steadily…but not like this…Maddie is still practicing EVERYTHING and shining like a RoCKsTar…she is getting pretty fast at 4 point crawling and she bear crawls sideways…it is very funny…when she pulls to stand she turns around faces whoever and does this little move that screams I am just to cool! She has began doing a little head bobble while jabbering and it is so funny how she has an attitude that does not fit her short stature…today I remembered that I knew this was going to happen…and O well…we have survived much worse then this! Maddie still has the BEST personality of any person I have ever met…she is kind…I can tell because when the little guy cries she tries to console him with  hug…Maddie is very protective…I know this because when he falls down she rushes to see if she can help him --by sitting on him…and my Maddie loves to share…I know this because anytime he has something in his little hands...she takes it away from him and then promptly crawls always as fast as she can! I admit it is hard to watch…but I am glad I have a first row seat…

Monday, January 3, 2011

hush little baby...

as I lay my baby down to sleep…for Maddie’s entire life --she has just laid down and went to sleep…no rocking…no cuddling…no bottle…just a diaper change, kiss and sleep…she always slept in her own bed…no problem…then she got sick last week…and at 19 months old the little stinker has found herself sleeping with mommy and pushing daddy out! I swear she keeps one eye open when we go to lay her down...because she will not lay down and go sleep…when I tried to put her in her bed…she screamed until I picked her back up…and laid her with me in our bed…her eyes are to die for…they smile with joy and she has this grin on her face…and she moves her body in a cuddling way to make her way into the bed and be so very comfy…last night she sat straight up looked at me --gave me a kiss and fell back down into the bed…sound asleep…she loves to sleep with mommy…and I am not sure I hate it! I love the family bed we shared with Max…but it did become a problem…I love to cuddle with Maddie…I love to hear her snore…I love to watch her dream…I just think she is pretty neat…

Sunday, January 2, 2011

stick n stones...

I tend to shy away from conflict…I used to get a rise out of it…I even enjoyed drama…I enjoyed making fun of people…I enjoyed judging them at first glance and going on with my day as if I did not hurt a sole because I did it between friends…oh how things have changed in my selfish little world…I became a mother of one of those whispers…I do not like to upset myself anymore so I do not look at 20/20 reports of “what would you do if someone…” used the “r” reports…I do not look at pictures with disparaging remarks about my child or any other person that has a difference of societies presumed “norm”…so yesterday I saw a message to check a facebook page that has pictures of people with Down Syndrome and make sure that my child was not used in one of these photos…generally I would have ignored it…I would have just said I do not want to know…but I did…I clicked on it and cried…I got an upset tummy and had to go to sleep to cope with the sadness that I felt...all I could think of is that this is my fear…a fear that people like to dismiss because they think everyone is made fun of…that people think that in today’s world that people do not make fun of people the way they use to…well this page with its 36 followers is proof that ignorance is alive…I was thankful to see only 36 people thought this was a likable page…but how sad…that my child is thought of as less then human that they need to make a page to tell the world that my child that was born with a little extra needs to be pointed out and laughed at…this was one of my fears when I found out that Maddie was being born with Down Syndrome…that I cannot protect her from stupid…I cannot protect her from people that think she is less then a human because she was born with cherub features…Chad and I where flipping through the channels a couple months back and came across Larry the Cable Guy…we went to a live show a couple years back and I peed my pants I thought he was so funny…as I watching his special; he said “it” and made repeated gestures towards the “r” word…Chad turned the channel…neither one of us thought he was funny anymore…he had lost his luster and just sounded ignorant…a couple of weeks ago a person posted that they were going to go “spazz” out at a Special Olympics fundraiser…I found this statement completely ignorant…I am not up for debate on this topic…I will not wavier on my feelings for words, statements, phrases, or even gestures that are insensitive…I no longer feel the need to correct every slip or educate someone that thinks it is funny to make fun of a group of humans…I just feel sorry for them that there ignorance will never allow them to ever get to know my child and the greatness she could teach them and show them…I am still not sure what I will do if any of these phrases or gestures are done around Maddie…I am still thinking of how to teach her compassion to others ignorance…the other day when I was sitting on the toilet…Max walked in and asked why my legs hung off the toilet…I said because I am big…he said no it is because you are fat…so right then and there while I was on the toilet I had a conversation with my 5 year old about insensitive speech, language and words…he grasped the concept…he said sorry…and that was the first step in raising a human tolerant of other people…fat is a learned word to hurt and so is the “r” word…