Trisomy 18

Our Daughter’s Birthday

/ Missy Goodnight / 1 Comment

It’s that week. The week where I want to stay in bed and cry. Eat all the carbs in the house. Think about the what might have beens. The could have beens. The should have beens. I should have a daughter who is celebrating her 10th birthday this week. I should be showering her with gifts. The candy she likes, the stuffed animals she loves, her favorite doll or her favorite video game. Laughing in the evenings while we cuddle with the family and listen for the 10th time as we share the story of her birth. Instead, last night Jackson and Jerimiah and I talked about the girl we thought she would she been.

Jackson thinks Lydia would have liked Minecraft. Jerimiah thinks she would have liked whatever her big brother liked. I think she would have been too much like me to handle. Of course that’s the should have, would have, could have beens at work. The very real fact is that our daughter, from the moment she was conceived, had very real problems. Had she survived her birth she would probably not actually be here to celebrate her 10th birthday. The daughter we had had a chromosomal disorder that if she beat the 10% survival odds, would have been wheelchair- bound, unable to care for herself, unable to feed herself, let alone play Minecraft. Our daughter was never the girl we think she should have been, could have been, would have been. But her small, short life has surely impacted a great many people and that is the reality. I need to keep that in mind moving forward this week. I have to, so that I can indeed keep moving forward this week.

Sending love and light to you all. I hope you can move forward this week too.

M.

The Day After Yesterday

/ Missy Goodnight / Leave a comment

Yesterday is over. I wait all year to get through the month of August, and though I still technically have a few more days left, the month is over for me. If I can get through my daughter’s birthday, well then, I can get through anything. She would have been eight years old yesterday. We would have had a party. Who knows what kind. Maybe a Minecraft party, thrown with her big brother as the host. Maybe a retro party like Jackson had last year, full of clowns, and bright colors, and a bounce house. Maybe she would have wanted a Disney princess party, or a Toy Story party, maybe she would have loved a llama party like her mommy. I think about these things.

Of course any of those parties would hinge on the fact that she would have had to be born. And then she would have had to be born “normal,” nor “abnormal” like it was written on all the paperwork. She would have had to shaken off that extra chromosome somehow. She would have had to be a totally different daughter. The one I imagined in my head, not the one she actually was.

I’m not losing it, don’t worry. I’m just letting you into my brain on the day after the eighth anniversary of losing my daughter. I cried in my therapist’s office last week. I told her that I have been having panic attacks in the middle of the night. I told her that I’ve been waking up thinking about death. Existential dread, sure, but so much more. She assured me that it was okay, and in fact normal, for eight years later to have this happen. It will also be normal in 20 years. And in 30 years. Because grief doesn’t stop just because you want it to. You can’t will it away.

I cried for the better part of an hour, while my husband held me yesterday afternoon. My people texted me. Thinking about you. With hearts and hugs. I’m here if you want to talk. I appreciate it all. I appreciate the love and support you give to us, but I am also sorry. Sorry that you have to send that text. Sorry if you feel like I talk about her more than I should. We all have our ways I guess, this is mine. I say her name, I tell her story, I educate people when I can. And I have learned that’s okay. But on August 25th I sort of just shut down. And I’m slowly learning that’s okay too.

The day after yesterday is better. Brighter. More possibilities lie ahead. So thanks to those who helped me get through, especially Jerimiah, Jackson, and Duke. Three outta four ain’t bad.

❤

M.

Trisomy 18 Awareness Day

/ Missy Goodnight / Leave a comment

March 18th is Trisomy 18 Awareness Day. I don’t need to be made aware of Trisomy 18. I was made aware of it in August of 2011. I also don’t think the vast majority of the public needs to be made aware of it. Like a lot of other medical conditions, you don’t really know about Trisomy 18, or its similar conditions, Trisomy 13 and Trisomy 21, unless it comes crashing into your life. But, I do support the Trisomy 18 Foundation. And I do love and admire the people in the world who are out there living with Trisomy 18. And there are people in the world who are out there living with, and caring for those living with, Trisomy 18. So I do find it necessary to educate others on the condition. That’s what I call it, a condition.

Trisomy 18 is a condition caused by an error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair of number 18 chromosome, an extra chromosome 18 results (a triple, hence tri) in the developing baby and disrupts the pattern of development in significant, life-threatening ways, even before birth. A Trisomy 18 error occurs in about 1 of every 2500 pregnancies in the United States, and 1 in 6000 live births. The numbers of total births is much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy.

Unlike Down Syndrome, which is also caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with medical complications that are potentially life-threatening in the early months and years of life. Studies have shown that only 50% of babies who are carried to term will be born alive, and only 10% of those babies will live to see their first birthday. Most of the babies who survive are girls.

As I mentioned above, there are people living with Trisomy 18. Perhaps one of the better known children living with this condition is one-time Republican Presidential hopeful Rick Santorum’s daughter, Bella. Bella turns eleven this year. She is a beautiful young lady, with well-equipped parents who have made it their mission to see that she lives a happy and adventure-filled life.

At the risk of being political, I will stop there. As the Santorums and I have little in common, other than having a daughter who was diagnosed with Trisomy 18, but please be aware that not all people in this situation, or with babies who have life-altering disabilities, are capable to care for, and provide for, their children in such an amazing way. Just be considerate.

I’ll end with a link to the story that I wrote about our daughter Lydia. I suspect it will tell you all you need to know about our journey. As always, I welcome comments, questions, and thoughtful discussion on any topic I address. But remember, above all else, there are people in the world who are battling things you can’t even conceive of, things you do not know about, things you are not even slightly educated on. Be kind to all you meet.

Lydia’s Story: http://mudseasonreview.com/2018/10/nonfiction-issue-40/

❤

M.