I spent much of my free time the latter part of March and the first couple of weeks of April working on a paper that I was writing for the seminary class I took this semester. After I finished writing it, I sent it to Aaron to review and edit for me. It’s handy to have a really bright kid who also happens to be a really good writer and possibly owes you a few paper edits because you’ve proofread about a bazillion of his papers and college essays over the years.
After sending it to him, I thought what an incredible gift it was to be able to share this part of myself with him, the way that he has been able to share it with me. That thought was followed with what an incredible gift it is to have him here with me at all and healthy enough to share it with.
I enjoy Timehop very much because I love seeing photos of the boys when they were much younger, and I enjoy the trip down memory lane each day. But sometimes something will pop up that is hard for me. Sometimes a quote I posted because of something I was going through at the time. Sometimes a photo or a memory of someone who isn’t here anymore. The photos that showed up at the time I sent him that paper were especially hard for me to see because they were from Easter weekend two years ago.
It was at a time when he had literally been sick more days than he had been well for 9 plus months. We had decided to take a family camping trip for the long weekend. Partly because it had been a really challenging and difficult school year with Aaron being so very sick and because we had not had any quality time together in such a long time. Partly because I wanted to be able to take him away so that he would be able to just rest and relax and not feel like he had to be doing anything other than sleep late and lay in a hammock all day.
He had just been diagnosed with a primary immune deficiency a month earlier. With that diagnosis, we finally had an answer to what had caused the three bouts of pneumonia, two bouts of whooping cough, and countless other illnesses that had caused him to be so ill in the 9 months prior. He was diagnosed with an illness called chronic variable immune deficiency which causes him to have limited immunities against many severe and potentially life threatening illnesses.
He was due to begin treatment the Monday after Easter, and we were just trying to hold on to him until then, praying that he would rally quickly. Because, quite honestly, the sweet boy that we knew and loved so much was fading before our eyes. What we would not know for another month was that part of the reason he was again so sick, and had been so sick for the two months prior, was a particularly dangerous and rare bacteria that had invaded his lungs and had the potential to move to his brain.
Aaron was so blessed to have doctors who would not give up on finding answers to his illnesses. Who were dedicated to finding a diagnoses that explained what was going on with him and a treatment that would give him back his quality of life.
He has been fortunate to have responded very well to the IVIG treatments that he received every three weeks for a year and a half, and to the subcutaneous treatments he has received each week for the past 9 months.
We have been blessed by good insurance which pays more than $1000 a week for these treatments that have literally saved his life.
But the treatment that has given him back his life, and has given back the lives of so many others like him with compromised immune systems, is not possible without selfless persons who are willing to donate plasma.
If you have ever felt a need to help someone in need, but didn’t think you had the talent or ability to do so, please consider plasma donation. The life you save could be someone’s mother or father or brother or sister or husband or wife or child. The life you save could be my child’s.
When I was helping Aaron proofread and edit his college essays last year, I read one that he wrote that broke my heart. He wrote of the period in which he was so sick. And what he said was this, “I had the faith that I was going to get well, but I’m not sure that my parents did.”
As a parent, you try to shield your children from anything in life that might hurt or scare them. Sometimes they see far more than you realize they see, despite your very best efforts to protect them.
Sometimes they see you being more scared than they ever thought you would be. And sometimes they see you be more brave than you ever knew you had the courage to be.
But the truth is, most of the bravery I have, I learned from Aaron. Because despite how bad he felt, how bad he still sometimes feels, he keeps going. He could use his disease as an excuse for not being all that he could be, but instead he uses it as a motivation to be the best that he can be. In the two years since beginning treatments, he has been through more than 60 infusions. For almost a year and a half, he spent a full day every three weeks at a doctor’s office with an IV running three bottles of immunoglobulin into his bloodstream. Since last September, he, or a good friend of his, or a good friend of Clayton’s, or I, have inserted three separate needles into his abdomen each and every week, starting the two hour process of delivering the medication which keeps him well.
I write this post today as he is wrapping up his weekly infusion of the liquid gold that keeps him healthy. Today wraps up the month of April, which is also primary immune deficiency awareness month. But for Aaron, and others who don’t have immune systems that work as they should, that’s every month.
If you can, please consider plasma donation. You may never know whose life you may save.
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