Spoiler....this is not a happy, uplifting, optimistic post. Having said that, I haven't blogged in awhile as I wouldn't have been able to write anything more than a series of curse words.
I know I am lucky in so many ways. I have the most wonderful husband, daughters, parents, and friends I could imagine.
And, I need to remember that because I have not felt very fortunate lately. I know there are many, many people less fortunate and I am so thankful for what I do have.
But, lately life events have been a reminder that there is no "pass on the bad luck card." We already have two family members with chronic diseases. Isn't a husband and daughter with Type 1 enough? It already takes so much of our time, energy, emotional health. So many families (and I am truly happy for them) seem to have healthy children. So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?
The universe does not care.
Courtney is supposed to be my healthy daughter. The one I don't have to worry about every second of my life.
Life does not work this way. I know it from my patients. And, I know it from other families.
But, it is still devastating.
Courtney was likely born with an abnormality in which part of her brain is too big for her skull. It is pushing down on her spinal cord and blocking the flow of her spinal fluid. It is creating a cavity in her spine, which if left could result in paralysis some day. It is creating scoliosis for which she has been such a trooper wearing a brace.
She needs brain and spine surgery. They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.) They assure me she doesn't need these things. But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery. But, we have seen two surgeons and they both recommend the surgery. According to one of them "the complications are rare but devastating." She is totally, completely healthy and with no symptoms right now except for her scoliosis. It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay. She will be in pain and scared. And, she is supposed to be my healthy child.
Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out? Why can't we have the normal scrapes and bruises of childhood?
Why, why, why do both my children now have a BIG, serious, SCARY health condition????
The universe does not care.
And, this may not be it either. There is no pass on the bad luck card. There may be even bigger and scarier things ahead. And, that is a terrifying thing to realize. Having two children with these terrifying, horrible things does not guarantee they will not get something else.
So many feelings from Jessica's diagnosis reemerge. Will I be able to do this? Will I be what she needs? How will this affect her? The anguish, the fear, the defeat. God, can I do this again?
And, a whole different layer. Who will care for Jess? Where is the best place for her? She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions. How will this effect her? And, for the first time since her diagnosis the focus on health is not on her. She clearly has felt the shift. Unintentionally, she is clearly trying to adapt to this.
I wish I could just say "pass." Sorry, we already have our hands full dealing with two of our family members having Type 1. Nope- we can't do this too. But, the universe does not care.
Luckily family and friends do. As we took awhile to learn with diabetes, it takes a village. We could not handle diabetes well without our Children With Diabetes family. I don't think we could make it through this without our friends and family. We are not fun to be around. We are an unpleasant reminder that bad things can happen to everyone's children. And, there is no limit to these bad things. Yet, a handful of friends has come forth and stood by us. While we have been disappointed in some, we have been amazed by others. Our parents have been a steady source of support.
And, so I am reminded of the powerful words "I can do this." Once again, I can do this because I have to. I don't have a choice. My family doesn't have a choice.
So, we will do this.