How do I make them understand the fear that I'm constantly trying to keep under wraps that one day I will wake up and she'll no longer be with us. Every time I read a post about a Dandy-walker child that went for a nap or to bed and was fine and never woke up my fear takes over. It happens way too often and nobody talks about it. It's devastating to watch other families we've met online say good-bye to their children with no rhyme, reason or warning.
How do I make someone understand how much extra effort and stress it takes Madilyn's little body to just function each and every day? Add to that her Adrenal Insufficiency and complex X-chromosome abnormality and we are in completely unchartered waters.
How do you make someone understand that there is not another person ever to have her complex X-chromosome abnormality and it is not compatible with life.... so how is she alive still at 6 years old? Nobody knows...
We have genetics specialists around the world and 17 specialists here and they don't know, they don't understand how or why.... she's rewriting genetics history... she's disproving hundreds of years of genetics research.... how do you make people understand that when they just look at you like you're nuts when you try to explain it?
How do you make someone understand that something as simple as going to school in a very controlled and well thought out environment was killing her? When their main worry is what did they do wrong and why can't she come just one day a week for the teacher time? Why do I have to involve our medical team to attempt to make them understand that I'm not nuts... it truly is our life. It really is too much and not just a parental wish to keep their child home.
How do you make someone understand how much work and time it takes just to be able to get her through the grocery store without being overwhelmed? How do I get them to understand the devastation of finally reaching that point and then having it all taken away because we tried something new and pushed her little body too far?? How do I get them to understand the grieving process of having to start to learn those things all over again just so we aren't prisoners in our own home?
How do I get them to understand how upsetting it is to watch her struggle in an environment that previously was her happy place? A place outside of our home that she was thriving in and now is struggling because we tried school? How do we get them to understand that we're not making it up and we're not doing it to inconvenience them and it truly is detrimental to her health to be in that environment even when we/they are doing everything right?....it's simply too much for her....she doesn't fit in their tidy little box of diagnosis and "kids we've worked with" and never will.
How many times will I have to repeat myself over and over and in the end they don't understand anyway?
How do you get them to understand that when I say we have to pick and choose our battles it's not a simple choice? Some days hair brushing and taking footie pj's off is the end of the world and a battle we don't choose. Some days are full of non-stop playing but more often than not they are like today... she alternates laying in her playroom and the living room.... she sits and cries and yells at me while holding up the corner of the pink yoga mat that she has claimed as her own and she doesn't have the energy to drag it into the other room herself.... but it's a must have for her to lay on with her pillow and her minnie mouse blanket.... so I drag it from room to room and set it up and tuck her in and pick the right cartoon after a million tries and I wait for her to smile and ask me for kisses and then I hide in the other room and cry....
I cry because of the guilt of pushing her too far because I wanted something normal... I wanted her to go to school... I wanted an occasional break... I cry because sometimes no matter what I can't figure out what she wants or what she's trying to tell me.... I cry because I'm exhausted and I'm tired of trying to get other people to understand... I cry for all of the "normal" things that we will probably never do that I had previously taken for granted. I cry.....
and then I move on...I get out the blocks and puzzles that she can do while laying on her precious yoga mat and I lay on the floor and I play with her and I love her and I send out a little wish that I have many many more opportunities repeat this struggle because it means she's here with us and whether people understand or not, her being here is the most important thing and I will protect her and advocate for her until my last breath...
I always thought it would get easier as she got older but that most definitely is NOT the case... the struggle is real.... and so are the little pink shoes that have kept us going for the past six years.. after all.... those little pink shoes are what life is all about and if they could simply understand that life would be a whole lot easier.
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