There is so much new information, ALL the time. Celiac… I know this disease, this is my forte, you could ask me almost anything about celiac and I know the answer due to my almost obsessive research. Now, EDS….. and the lung disease no one has ever heard of (including doctors) and that nobody can spell, the diseases and other things she may have or may not. Its just so much to take in. I thought I was ok with it all, that I was coming to terms with it but then I found myself bursting in to tears at physio today and I had to sit with my back to her looking out the window – quietly crying – until I was able to stop.
Not so much that she has all this, I can deal with that, but the fact is she is in pain. Almost daily pain, pain that will be better some days and worse some days but that will probably never ever fully go away.
This is why I cried. Because she is in pain. My tiny teeny little girl who never did anything to deserve any of this, who is so brave and hardly ever complains, she is in pain, and my heart breaks in a million pieces for her and I just want to take all that pain and put it in my body so she can be ok.
I gave her pain meds today, I have only ever done that once before. I didn’t know what else to do. Physio today with hubby there to support language wise was great, we will be getting various equipment for her, to help her stabilise this wonky body of hers, to help her with her pain and hopefully make things a little easier. Again. This is why I cried.
I cried because my baby girl needs equipment. Not because she has EDS, not because she is different, but because she has so much pain that she needs equipment to try to alleviate some of it.
I cried because my darling girl, after a busy weekend was in so much pain just sitting in the car. I cried because I had to ask my husband to carry her because I knew she would hurt to much walking. I cried because she is paying the price of an awesome weekend with pain.
I cried because I cant – no matter how hard I try – ever take that pain from her.
Känner med dig. Gråt, skönt ibland❤️
There is nothing worse than seeing our children in pain, any kind of pain. I hope you get a resolution soon on how to help. It sounds like there’s been some progress, slow as it may be, at least it’s progress…