“Christian’s” knee has been swollen since January. Bleed after bleed early this year and it just never seems to get back to a “normal” size. He has needed to depend on his wheelchair more than I have liked, but when his classroom is at one end of the school and the cafeteria at the other, his knee can’t take the long distances.
He’s just seven years old.
He is in summer school four days a week and has been in the wheelchair and today he wanted to not use it. His knee looked better than it has in several weeks, so we let him walk. I had a little twinge of doubt deep down in my gut, and I didn’t listen.
And then the 891 exchange came up on my caller id…it was the school…Christian fell right on his knee.
Here we go again, infusing every 4 hours, Cryo Cuff, RICE…..we know the drill but it sure would be nice for him (and all of us) to get a break.
We just do what we know how to do.
I have no words to say how I feel for what you all have to endure. It just doesn't seem fair. I know God has a plan, but I wish he would give us a glimpse.
My son is 23. He is hospitalized right at this moment. We have been here almost two weeks and he started out in ICU over a kidney bleed. It would not stop bleeding. Jonathan also has inhibitors. I understand your pain and frustrations completely. We have spent our life in and out of hospitals. We never plan anything anymore . I havent been on a vacation in …in more than 15 years. He has missed spring breaks. Christmases..birthdays you name it. We dont get to do it. To top it all off his father passed away in 2008 from Cancer. Now Im alone in the hospital w him. Never a break. I also have breast cancer. Diagnosed in 2011. Bilateral mastectomy. Chemo for a year n half. Radiation. Back surgery. His bleeds. They say God doesnt give you more than you can handle ..well God must think I am super woman.
I love my son dearly. This has to be one of the most painful torturing diseases that few people understand.
I have begun a website too that I hope to make public within a few months.
I pray for you and your sons. I know its so hard and we have to find strength above all the suffering. People do not know our struggles or our childrens pain and suffering ..all the the events , sports, vacations, holidays and normal life they miss out on. Its not an easy path. It doesnt end and it doesnt get easier. Its a lifetime of never knowing and always wondering.
Just a note..My son too has had a knee bleed for several years now that has damaged his knee. He has several target areas.