When my children were initially diagnosed with a chronic and potentially life threatening medical condition, I wanted there to be a reason.
I wanted to know it meant something.
I wanted purpose behind the pain.
I read. Researched. Read more.
I thought it was something I had done. Something, perhaps, unintentionally done while pregnant.
Something that happened during their births.
Something I had done wrong after I brought them home.
And I was almost okay with that.
I mean, at least it would have meant there was a reason. Some explanation.
Something concrete I could get my hands on, perhaps even fix.
Turned out, it wasn’t any of those things and I tried to accept that I may never really know the deeper meaning behind the diagnoses we were living with.
But however I tried, I couldn’t quite swallow that. I continued to hold on to this uncomfortable feeling that I needed a reason. Would a reason really change anything? Would knowing WHY change our daily reality?
Even so. I wanted it. I knew it wouldn’t change anything, but I STILL wanted a reason.
Through the initiation of becoming a “chronic mom”, I began to shift my focus just a little, and perhaps in the wrong direction.
I still wanted a REASON, but I wanted the reason to change something.
I wanted the reason to be beneficial to someone. Maybe something good can come of this.
I wanted the reason to make my kids into something exciting. Maybe they will change the world because of this.
I wanted to know that because of their suffering and pain, something about the future of primary immunodeficiency would be altered, something that would make this journey worth it.
I was selfish.
This is our life. This is what we’ve been given, and spending precious time trying to force my family into some box of reason is just a waste of life minutes.
I have great kids. We have a normal family. School, work, dinner, laundry, dishes, dogs, homework.
Okay, so sometimes they don’t do their homework.
And sometimes I don’t so much cook dinner as I do pour cereal into bowls and pretend it’s dinner.
And the clean laundry piles up in the baskets that sit in the living room.
But I mean, still, a fairly normal life.
We aren’t special. Just because my family lives with chronic disease doesn’t mean my kids need to grow up to save the world. They don’t need to start a foundation. They don’t need a Nobel Prize.
Trying to push some magical reason into the reality of chronic disease just reinforces the idea that their differences make them…..well, different.
They didn’t choose this disease. Why should having it push them into being somebody they really aren’t, just so I can have my reason?
And that is how I have been approaching things the last several years. My kids are normal kids who happen to have lots of acronyms scribbled in their medical charts. I have a normal – albeit messy – house, and our hutch happens to be decorated with medicine boxes. Monthly, the kids miss school for an infusion. Six days a week, my son gets an injection. We wash our hands a lot. We meet with a lot of physicians.
They watch cartoons I find downright stupid. They fight sometimes. They cry sometimes. They argue with friends, and fall in and out of teenage love, and try to create their own unique looks. They rise, they fall, they win, they fail, they do things I find pretty fantastic, and do things that piss me off.
And life goes on. Days go by. They are growing up, just like everyone else’s children. I was at peace with things. (That peace was hard-won, by the way. Lots of tears and questions and prayers and dismal thoughts. I fought for that peace and clutched it to my soul.)
Until The Phone Call.
One of our physicians was involved with a study. An exciting study! A study examining diseases that affect the immune system, particularly autoimmune and immunodeficiency diseases.
They were especially interested in our family, because all of my children have the same two biological parents, and we have four affected and two unaffected in our family.
This evidently makes us a novelty, or as my daughter would say, “freaks.”
Everyone we have met with regarding this study has been over the moon about this. The rarity of it! A family of such LARGE SIZE! And FOUR AFFECTED!
These physicians and researchers, they talk really, really FAST and their eyes light up and they can barely stop themselves from squealing.
They told me this study could potentially lead to a cure in my grandchildren or great-grandchildren’s lifetime.
In a year, I will get a printout of the information about the genes in our family and where they went wrong and maybe even find out what caused the immunodeficiency. Maybe.
I signed the forms and gave the blood – we all did – and I want to think I did it for all the right reasons.
I believe I was willing because it could benefit my children, and their children. Even me, since I am on the “affected” list.
But after it all was said and done, I started back to an old way of thinking.
I began thinking, “Maybe this is it! Maybe the reason we are stuck with this disease is so we can be right here, at this moment, involved in a study that could change the future of treatment for CVID.”
I thought I had beat that Reasoning Monster.
It appears that all along, it was just waiting for the right moment to pop back up in my thoughts.
There is a part of me that still just wants my reason. Something to make this all worth it.
Do you know what’s really worth it?
The last seventeen years I’ve been a parent, raising good kids in a world that is sometimes not so good.
Spilled juice. Broken toys. Baby teeth hidden under a pillow. Brightly wrapped presents under a Christmas tree. Watching my children learn to read. Summer baseball games. Parent-Teacher conferences. Guitar and clarinet lessons. Halloween costumes. Choir concerts. Elementary school talent shows. Senior pictures.
I’m still glad we participated in the study. I believe a lot of good will come from it, and who knows? Maybe my grandkids won’t have to deal with monthly infusions because of the blood we gave this month. Maybe my children won’t have to watch their own kids fight illness after illness after illness because of this study.
Maybe. Maybe not.
Regardless, my brain divides and wars within itself.
I’ve had strange dreams about “Screening Protocol for Genetic Diseases of Lymphocyte Homeostasis and Programmed Cell Death.”
And I wake up, drenched in sweat and breathing hard.
I am simply left….