Tuesday, March 8, 2011

extra(s)

last week someone mentioned that Down Syndrome is not an issue it is the extra(s)...I kind of shrugged it off and I was not at all offended by the comment...but the comment would not get out of my head...and still I am thinking about it...when we found out Maddie was going to be born with an extra chromosome...it consumed me...my every thought...my every move...but today it does not...only sometimes I will be gazing at my Maddie and think ooohh there is the Down Syndrome...now when I look at her I see only perfection...when she was getting ready to be born I was scared of the extra health issues that are associated with Down Syndrome...in Maddie heart and the esophagus TEF/EA…so the extra(s)…I enjoy that Maddie receives therapy 3 times a week...her therapy sessions teach me to parent and teach my children better...I think it is amazing for Maddie, for Max and for me...our therapists are our life line...they are the people that can help us with things that doctors only read in books or learned from studies...our extra(s) have shown me it does take a village to raise my children...a not so nice extra...I am not as offended of the “r” word...at this point I am numb to it…I have over thought what I will say and how I will react…and of course I will be sad and mad but…I think that if you choose to sound ignorant…ok…if you choose to use it and hurt my daughter…you get to live with the guilt of not being nice…and I get to hug my little girl and explain to her why people have to be so mean and selfish….another extra...Maddie and delays…screw them…she will walk when she does...and she is close she is taking steps and we scream, clap and cry every time she does it! we celebrate EVERYTHING…and it is good…but the extra(s) that makes me cry, cringe and hurt…makes my tummy turn and I have no answers for…Maddie chokes…or should I say obstructs her airway every couple of days…yes that often...and then there is a waiting game of should we or should we not take her to Denver…we can not be treated in our home town…they do not have the tools to help her…nothing small enough to work on her…so either we are life flight, ambulance to Denver or we drive ourselves…so it becomes a waiting game...tricks of the new trade that I have had to learn…she can breath she just cannot eat or drink when this happens…she will sleep and she does not complain…unless it gets to full in the blockage and she begins to throw up…so then I begin with letting her esophagus relax…trying to serve her ice cream to either puke up the item, make the item go down…or encourage the acid reflux to eat it away…this is an extra that is hard…when something is lodged it takes anywhere from a couple minutes to a couple of hours to a couple of days to determine what we should do next…the doctors do not have answers…it is a wait and see…a trial by error…an extra we have to just deal with…the other extra that weights heavy on us is her heart…and the pending heart surgery…of course it looks like now it will be done orthoscopically and not opening her chest...this is good…and every one tells us an 'extra large' ASD is a good heart problem…yes it is...but not when it is your child…so yes I am thankful there will not be an open chest…but there will be other things and there always are…Maddie will have this surgery around 3 years old…just a year away…not something to look forward to just another extra…I am thankful that Maddie is relatively healthy…and she is VERY happy and content…but the stress of the extra(s) and the stress of the unknowns are about to do us in….



4 comments:

  1. Oh how I feel your pain...it's always been the medical things for us that we don't like about DS because they can scare you to death...like Maddie's choking and heart issue and Emily's leukemia. My hope and prayer is that both of our girls will beat these challenges and they will seem like nothing but a very distant memory a few years from now :-) I have had many parents of children with DS tell me that things seem to calm down a lot healthwise when our kiddos turn 3 or 4 so I hope they are right!

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  2. It sounds like you still have your head above water, keep taking it a day, an hour, a moment at at time however small you need to break it down. I know you need to be vigilant with Maddie so try to have some time out - DVD's I find are good for zoning out for an hour or 2 in your own home. Thinking of you.

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  3. Choking is my BIGGEST fear for both of my boys, it always has been! I'm extremely paranoid when I give them food...I cut Landon's grapes in to several pieces until just recently when I realized he's probably not going to choke on them any more...lol! I can't even imagine what you must go through every time Maddie chokes, it would take years off my life!

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  4. The extra medical stuff and appointments can be hard to deal with, much more than Ds itself. I hope you find some answers for Maddie's choking. I'm sure that is so scary.

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