I recently commented on a post in a private FB group of parents with kids with Mitochondrial Disease. The poster basically was expressing her displeasure with pregnant women who respond to the question “Do you want a boy or girl?” with “Doesn’t matter, as long as it’s healthy.”
The poster’s complaint with this answer is well, what if your child isn’t healthy? Will he or she be less valuable, less loved? To which 99% of people would answer, of course not. But some parents with sick children are offended by it because they feel it writes off their kids.
Before I had Grayson, I had the same feeling: don’t say that, because healthy or not, you will love that baby the same. And yes, I obviously still feel that way. I love Grayson with all my heart and soul. BUT, with this next baby, love not being an issue, it matters if he or she is healthy.
It is NOT ok that Grayson has Leigh’s Disease. It’s NOT ok that at two years old, he can’t even sit up on his own, nevermind crawl or walk. It’s NOT ok that he gets 100% of his food through a tube in his stomach and he vomits multiple times per week, sometimes per day, that his legs shake and are so stiff that it’s difficult to hold him. It’s NOT ok that he can’t call me Momma or tell me what he wants, and that he can only see a few inches in front of his face. And it’s definitely NOT ok that I will probably outlive him.
So when people ask me what I want this next baby to be, of course I have a knee-jerk gender preference- I think most people do. But I want healthy, above all else. Because if this baby has Leigh’s, it will NOT be ok. I will survive, and I will do what I have to do. I will love the baby with everything I have. But it will shatter me- emotionally, financially, and maybe spiritually.
My brother, who is way better with words than me, put the pain of our situation so eloquently in a post yesterday:
Grayson’s birthday party was yesterday afternoon. We went small this year- just family, at our house. In addition to grandparents and aunts and uncles who live here, we were so touched that my brother Peter and his wife Megan flew in from Nashville to help us celebrate. My brother Matthew also drove in from Waco. So sweet.
The theme for the party was A Very Veggie Fiesta, combining two of G’s favorites- Veggie Tales and Mexican food. For a party I basically threw together in a few days, I think it turned out pretty cute, and everyone seemed to have fun. Of course, I had a TON of help from my sister and sisters in law- just wait until you see this cuteness.
The invitation, designed by my little sis Rebecca, who sadly is in Savannah and wasn’t able to come to the party:
The decorations: since the colors were similar to last year’s party, we used the banner Hannah and I made last year.
We bought red paper lanterns at Hobby Lobby and turned them into Bob the Tomato.
We did the same thing with green balloons to make Larry the Cucumber.
And we couldn’t resist making “real” Larrys.
Before the party started, Aunt Hannah wanted Grayson to open his present. He was super excited about the tissue paper!
Ok, you ready to see the cutest thing EVER?!?! Check out what Hannah and her mom MADE for G. Seriously, it is just too precious for words.
And you have to look at Larry- he has a sombrero and a pancho- ha ha!
We ate taco salad (thank you Megan for making yummy guacamole and Brittany for the queso), then G opened his presents, although he wasn’t too happy about. He said, “It’s my party and I’ll cry if I want to!”
Cake Time! The oh so talented Hannah made these utterly adorable cake pops, displayed in flower pots with peas- oh, the cuteness.
I think the highlight of the party was when we presented Grayson with his cake pop. He of course put it in his mouth, but I don’t think he had any idea he was biting into food. He bit the head right off Larry, which apparently was hilarious, because he burst out laughing. It was oh so cute, and we all laughed (and cried a little).
It was wonderful to be surrounded by family on our sweet boy’s 2nd birthday. We have so much to celebrate!
After the birthday boy went to bed (is there anything better than Grammie cuddles at bedtime?), my goofy siblings had some fun- they seriously crack me up!
My brothers’ wives (and me). I love these girls SO much!
2 years! Happy Birthday, sweet boy. Today (and tomorrow at your party) we celebrate YOU and what a special gift you are. You have filled our lives with joy and love these past two years, and continue to touch so many lives with your story, most of who you have never met in person. You are pretty amazing.
Yesterday, we brought cupcakes to your school to celebrate with your new friends. Mommy has been waiting a long time to do that- bring cupcakes for my child to school. You were really tired and didn’t really appreciate anything about your little party except when we sang “Happy Birthday”- that was the only time you weren’t crying. But it was still fun for me and it was special to see how much your teachers adore you.
This morning, we woke up to a wonderful surprise. 9 of Mommy’s bloggy friends gave your a virtual Birthday Party- it was so cool! They posted such sweet messages, birthday wishes, and Mitochondrial Disease awareness, and we are so, so grateful for such wonderful friends we’ve never even met! Look at the sweet collage that was in all the posts- isn’t it adorable?!
This morning, we had a Mito Social with some families who are also affected by the same disease you are. We had a good time, although in your always perfect timing, you threw up all over Mommy’s good friend who was holding you when you got fussy. Oh, Grayson. You and your buddy Kaiman (who also has Leigh’s Disease) are 2 handsome dudes! Everyone sang Happy Birthday and we ate cookie cake in your honor.
Unfortunately, when we got home, it was apparent you weren’t feeling well. Poor little guy, you got sick on your birthday 😦 You did take about an hour nap, but had a really hard time falling asleep tonight. I hope you feel better tomorrow for your party!
Sweet boy, you have been through SO much in your two short years on earth. And on top of that, we got horrible news last week about your disease- I just can’t imagine you not being with us. I cherish each and every day with you and I hope and pray for many, many more birthdays to celebrate your life.
I love you so, so much Grayson. Thank you for being you, for being amazing, and for bringing such joy to my life. Happy 2nd Birthday!
Have you ever seen more adorable siblings?
Big Brother has been in quite a serious mood today, and little brother/sister (???) is all about his/her hands being all over his/her face. We may have another thumb sucker!
We had our 20 week anatomy scan this morning, but before the ultrasound, we met with a genetic counselor. I now more clearly understand the specifics of how Grayson could have inherited Leigh’s Disease. Most likely, it is recessive inheritance, meaning he got one copy of the defective gene each from Ryan and me. This means any children we have will have a 25% chance of having the disease. But this also means a 75% of any children not having it. I want to be completely optimistic and hopeful about that 75%, but 25% still seems so high. And it obviously already happened once…
The other problem is we don’t know what the disease causing gene is, so they can’t test Ryan and I. Grayson does have a defect of “unknown clinical significance” that has been shown in Leigh’s kids, but geneticists haven’t classified it yet as definitely being disease causing. The counselor did say it was likely, but not definite, that could be our gene.
We talked about doing genetic testing on the baby by amniocentesis. We could test and see if the baby has any of the same genetic defects as Grayson. This may or may not tell us anything and could just raise more questions and cause more anxiety. OR we can wait until the baby is born and do blood testing as well as imaging, and of course, observation for symptoms. This is most likely what we will do, due to the small risk of doing an amnio, and the fact that it probably wouldn’t tell us much anyway.
The genetic counselor recommends we see the same geneticist that Grayson’s Mito specialist recommended we see. She (the counselor) is going to call that doctor today and explain our situation and try and get us an appointment. So…not a ton of answers, but a lot more clarity and another plan for moving forward.
The ultrasound was blissfully normal. With Grayson’s anatomy scan, the ultrasound tech was very clinical and almost cold. She wouldn’t give us any information at all during the scan. Of course, back then, we had no idea we had anything to worry about, and the scan ended up being totally normal. Today, I have no idea if she knew our situation or not, but our tech was warm, and with each body part she looked at, she commented with “very nice”, “totally normal” or “looks great”. Even though I know this doesn’t mean the baby doesn’t have Mito, it was still reassuring and comforting.
We are so hopeful this baby is healthy, because the heartache of having two babies with Leigh’s is incomprehensible. Gone are the days of having a normal ultrasound and then boasting about a healthy baby on the way. But we are hopeful. Without hope, the next few months would be excruciating and anxiety filled. But I’m not going to live that way. We will do what feels right in terms of testing, trust God, and pray.
Pray, pray, pray, pray, pray. And I’m going to enjoy the rest of this pregnancy, because it could be my last. I absolutely loved being pregnant with my Grayson, that time that he was all mine and we had already began forming that deep bond of mother/child. I want to have that again with my second. This baby started moving and grooving this week and I am trying to cherish each wiggle and kick without the anxiety of worrying about what’s going on in his/her DNA, beyond what an ultrasound can detect. Because whatever is below the skin and bones, this baby is perfect and already so loved by his parents, big brother, and so many others. And for that we are grateful.
Had you ever heard of Mito before you met or started reading about Grayson? I know I had never heard of the disease until about a year and a half ago.
I bet you’ve heard of cancer though.
And I bet you’ve heard of all of these too.
Grayson, and most other kids with Mito, don’t look sick on the outside (but they sure look cute, huh?).
If you are in Texas, and want a great excuse to eat pizza this week, eat at any California Pizza kitchen and help Grayson and all those suffering from Mito. (Don’t forget to print and bring the flyer).
This just says it all.
My hero had a GOOD day today!