To My Children, Fearing for Them

by Wendell Berry

Terrors are to come. The earth
is poisoned with narrow lives.
I think of you. What you will

live through, or perish by, eats
at my heart. What have I done? I
need better answers than there are

to the pain of coming to see
what was done in blindness,
loving what I cannot save. Nor,

your eyes turning toward me,
can I wish your lives unmade
though the pain of them is on me.

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let it happen

I felt like I’ve been doing so much better this week…less crying, less time spent reading medical articles for all the outcomes. but when I had a friend over for our kids playdate and was telling her all my preparations and worries–homeschooling the girls this fall, what to bring to the NICU, etc etc etc, she stopped me and said, “you know you can’t control all this, right?”. I think I spent the rest of the playdate just crying–she had other wise words and encouraging words to say, but what struck me the most was that I just need to let this happen.

The day we got the diagnosis (the first horrible ultrasound where the doctor offered us the option to terminate), bryan was checking email that night and listened to a new song by Switchfoot (his favorite band), called “Let It Happen”–“tomorrow holds what tomorrow holds, can’t make it get here faster”. Last week, listening to a talk from the 22q family foundation, their keynote speaker (a successful news reporter who has 22q), in response to a random question about his father’s death, said he had to “let it happen.” and then today, when my friend told me the same thing, I just broke down.

Research is helpful and comforting to an extent–I’m informed, I know what to ask, I’m less scared of the unknown. But research won’t help me control this situation–I can’t stop this from happening. I need to accept help when people offer it–this isn’t something I can deal with by myself.

Underneath all of it, I have been truly believing that she is going to die. Or worse–live a little while, a short life of suffering, then die. I haven’t let myself believe that she might live. That I could bring that baby girl home.

The week of the diagnosis, I put all the hand-me-down baby girl clothes in her drawer, to try to make myself hope. But I saw we had only 3 newborn sleepers and thought “what’s the use, she’ll never wear them.” I can’t go through the rest of this pregnancy, with this little baby kicking in my womb, completely believing that she isn’t going to live. I need to buy this baby some clothes, and decorate her nursery, and not think about her like she is already gone because she isn’t.

(and here’s Bryan’s cover of Let It Happen)

when in doubt, research!

I’ve been in research-mode the past several weeks–learning everything I can about tetralogy of fallot, pulmonary atresia, unifocalization surgery, genetic microdeletions, 22q11.2 ds, through reading scientific articles, awareness websites, podcasts, and speaking directly with parents of children with those conditions.

I feel ok about 22q–the symptoms vary widely and no one child presents the same way as another–so really we won’t know exactly what Kit is going to deal with until she is dealing with it. It is one of those syndromes that is far worse to google than to look at reputable sites, and most parents of children with 22q / adults that I’ve spoken to have far milder symptoms than the overwhelming 180 possible manifestations listed when you randomly google it (if you are on instagram, look up the hashtag #22qties to see some adorable 22q babies)

I’ve also learned a lot about how early intervention and one-on-one interaction can make a world of difference for her–something I am equipped and ready to do anyway as a homeschooling mom–and with her heart condition, there were many aspects of intervention we would have been dealing with either way (speech therapy, physical therapy, frequent doctor visits).

Parents tell me the hardest part is the first few years, with the countless doctor visits, health problems, surgeries and interventions. Adults say that the hardest part was being bullied in school because of speech problems and of learning differences (math seems to be a problem for most with 22q).

There are still a few books I’d like to pick up on the topic, but for now I feel fairly well informed. And honestly the most encouraging part of this diagnosis was that the geneticist was NOT negative about it and assured me that many children with early intervention go on to live normal healthy lives. Overall, I’m grateful that she has this and not a syndrome that causes death.

The heart condition is the primary concern for us right now. The presence of MAPCAS will make surgery complicated. I’ve not been able to find solid data on survival rates–perhaps this is for the better–but from what I understand complications with surgeries are a concern, as well as MAPCAS that are too small or weak to be used in the unifocalization procedure (this is where they pull all those little collatoral arteries together to make her heart pump blood to the lungs like it is supposed to). I’m hoping that at our next appointment, the doctors will see good developments in her heart…but I know that nothing will be certain until she is born and they can get a good look at what is going on in there.

Right now, our primary prayer needs are-

  1. that Kit’s heart develops in a way that the surgeons can work with
  2. that Bryan and I have peace and trust in God during this time

In the few short weeks since the diagnosis, I feel like we’ve been grieving in a way–each week finding out more bad news, uncertain whether our baby girl will live or die. We have felt a ton of support from our family, church, and friends, and are so grateful for all of you who are praying for us and Kit!