Home 22q11.2 Coping with a Child’s Diagnosis – Part 1

Coping with a Child’s Diagnosis – Part 1

by Summerly Rowlands

The 5 Stages of Grief

No matter what a person is mourning, they typically cycle through the 5 stages of grief. For me, I have an internal struggle with saying I’m in mourning or was mourning, because how could I think or say those words while I have my perfect blessing of a daughter laying right next to me? However, if we’re being honest, I did mourn. I mourned the thought of what having a daughter would be like. And although that truly sickens me to say, it’s true & I’ve learned it’s okay to feel that way. When a mother has a daughter, there’s a lot of fun and exciting things to think about and to plan. After 13 days of having my daughter, the things I was thinking about were if I was going to get to keep her, if she was going to live. Plans went from a special life of her & I to a special needs life of her & I & the doctors. I also mourned for my daughter. The fact that she won’t live a typical life, or a life that society deems “typical”. Over and over I would cry to her, “I’m so sorry, I’m so sorry”. I can’t look too far into the future because I find myself feeling anxious when I do – too many thoughts, too many questions, too many what-ifs. But here we are, about 7 months in, & eventually, I got through every stage. I’m a better person for going through the emotions. And I’m a better person because of Izzy.

  1. Denial. When we first got the positive results for Izzy’s 22q (DiGeorge) diagnosis, I was confused, numb, unbelieving. The bloodwork must be wrong because this just doesn’t make sense & this wouldn’t happen to us, this couldn’t happen to us. We were told everything was fine when she was born, so clearly there’s a mistake. No child of mine has a genetic disorder or any disorder, we’re healthy, & we just came here to get some medicine so that we could take her home & make everything better. Even with all we went through at the hospital up until getting the confirmed results, I still had it in my mind that this wouldn’t be our life. Everything I had read online ever since the thought of DiGeorge was spoken just didn’t line up with my plans, it didn’t fit. This is all crazy and I don’t want to be here. We’re ready to go home.
  2. Anger. Denial was a fairly quick phase for me to get through since after the initial shock wore off there wasn’t much I could deny at all. Anger on the other hand – that stuck. The entire hospital stay, I was angry. Every day. Yelling, crying, swearing, staring, angry. Learning my daughter’s condition – pissed. This is completely unfair. People are out here just living their happy little lives, not being bothered with anything traumatic, having healthy kids left & right, & THIS is what WE get?! WHY US??? WHY OUR DAUGHTER??? Why would God do this, what could we have done so terribly wrong to deserve this??? SHE’S AN INFANT – HOW COULD YOU BRING AN INNOCENT CHILD INTO THIS WORLD JUST TO GIVE HER A HARD LIFE?! I hate You, I hate myself, I hate doctors, I hate hospitals, fuck Fuck FUCK!!!
  3. Bargaining. Like I said, anger lasted a while. Even once we got home, I was still angry. Angry every time she threw up, angry every time someone came too close to her, angry when people kept asking me questions that I didn’t have answers to… but then that settled (for the most part), & I found myself bargaining, praying, pleading. I would sit alone & just cry, calling out to God – please, PLEASE let Izzy live a normal life. I’ll do this & I won’t do that if you could just please make things better and make sure that she lives a long, healthy, happy, safe life. Please. Please…
  4. Depression. I still talk to God and pray for Izzy (& Eli & Kam) to live long, healthy, happy, safe lives, but He never took her condition away, it felt like He was never answering me… so the depression set in. Day in & day out of not sleeping, being covered in vomit, giving her medicine constantly, always having to check if she was still breathing… I was sad, I was exhausted, I felt sorry for myself & for her, at times I really didn’t want to go on. And now I fully understand people who say that suicide a lot of the time isn’t about wanting to die, but more so wanting the feelings to die. I wanted my feelings to die so badly. I blamed myself for everything, Izzy’s diagnosis was my fault. My only daughter & I gave her a lifelong disease. I must have done something wrong, I’m a horrible mom & my kids deserve better. Apologizing over & over. Depression for me came out in tears, feeling helpless & defeated, but it also came out in silence, feeling nothing. Like our lives would never get better. Like everything was ruined.
  5. Acceptance. But nothing was ruined. Not even close. The last time I sat by myself on the stoop & felt depressed WAS the last time. I feel sad that Izzy’s life will have challenges, but I am not sad. I am in love with my daughter & although she has a diagnosis, she is exactly who she is supposed to be. Izzy is Izzy, same girl today as she was yesterday. And as our hospitalist & nurse assured us, she has always been who she is & will always be who she was intended. The only thing that has changed is our awareness. The 22q11.2 diagnosis does not define her, and in the next few posts, you’ll see how coping for me means focusing on the small wins & not dwelling on what could have been or what might be. I no longer have to cry out, “Why us?!” because now I know, I found my reason.

I may have mourned the loss of what we thought having a little girl would be like, but I will never mourn the loss of our daughter because we still have her. Just how she’s supposed to be.

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