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!
It’s an interesting thing, having your entire world turned upside down, and yet at the same time, remain exactly the same.
This has been a horrible and devastating, normal week. After Tuesday, we still got up way too early, listened to Veggie Tales way too many times, and drove way too many miles to and from school. We had therapy, cuddled a lot, and giggled and cried. Grayson was adorable and difficult. Normal.
Right after I called Ryan on Tuesday and broke the terrible news, I immediately took this picture and texted it to him. I just love this picture and can’t stop looking at it- how cute is my goofy toddler who had no idea he had just an hour before been given a crushing diagnosis?
My family has received so much support this week and we are so grateful. Your blog comments, FB messages, phone calls, texts and prayers have made this awful news perhaps a little more bearable. My mom took Wednesday off to spend the day with us, and when she returned to work yesterday her students spent the first few minutes of the day surrounding her in prayer. So many people around the world are praying and thinking about us and G and we feel so humbled and blessed.
At the same time, I feel distant and removed from it all. I just can’t wrap my brain around it. I read and reread all your comments and it feels like I’m reading them about someone else. I just can’t believe this really could be true. How can this be true? This can’t be happening to my family, to my baby. I can’t even imagine him not being with us forever. I think about him leaving us and I start to cry, but I cry because I think, wow, that would be really horrible if that happened- not when it happens. Is this the denial stage of grief?
I am seeing my counselor on Monday, and I want a plan. I don’t want to just sit on her couch and cry and feel sorry for myself- I can do that at home for free 🙂 I want her to help me find the best ways to go forward from here- to make the most of whatever time we have with Grayson- whether it be a year or many more.
I spent the day with one of my closest friends and we talked a little bit about making the most of the time we have and creating special moments and memories. She suggested doing a photo a day. This probably won’t be too hard, considering I take so many as it is, although I am NOT a photographer. But I did create a little photo op during bath time tonight- I was singing and Grayson was laughing, so I gave him a shampoo mohawk. I love being silly with my G-Man.
This weekend, we have plans to be normal. Ryan is coaching football, I’m working, and I’m taking Grayson to a birthday party for one of his buddies tomorrow. We’ll go to church, listen to a lot of Veggie Tales, and I’ll attempt to start organizing Grayson’s birthday party. And I’m hoping it doesn’t end this weekend- I’m hoping we can just be normal for long, long time.
On September 11, 2001 the world changed forever. Yesterday, September 11, 2012, my family’s world changed forever.
It was a beautiful, clear morning in Houston, not unlike what New Yorkers described eleven years ago before ugly black smoke filled the blue sky. I loaded Grayson in the car and headed to my parents’ house to pick up Hannah, my sister in law who had graciously agreed to go with us to G’s doctors appointment, which I had jokingly promised her would be an “adventure.”
We were seeing Grayson’s Mitochondrial Disease specialist, who you probably remember has been on maternity leave for several months. We had to discuss with her the results of the MRI, spinal tap and genetic testing. However, I have had copies of all of these and had even discussed the results with G’s neurologist. When Ryan asked if he should take off work and come with us to the appointment, I said no. I figured she would say basically the same things we’d heard before, but maybe with a little more clarity.
We talked to a med student, Grayson fussed, we changed his diaper- all “normal” things we do routinely at doctors appointments. Then the doctor came in, and the plane slammed into our building, although the doctor ended life as we knew it with kindness and gentleness. The news was devastating and shocking: Grayson has Leigh’s Disease.
Leigh’s Disease is a rare form of Mitochondrial Disease that is fatal. We do not know how long he will live, but Grayson will most likely not survive childhood.
In a second, I went from Special Needs Mom to Mom of Child with Terminal Illness. How am I supposed to process this? What I am supposed to do? A lot of real life people know the news already and are asking if we are ok and what they can do. No, we are not ok, and I have no idea what they can do. It’s just where I am right now.
Please know if you’ve called, emailed or texted and I haven’t responded it’s not because I don’t appreciate it or don’t want to talk to you- I’m just exhausted and emotionally overwhelmed right now. Bear with me- and know I am so grateful for your prayers and support.
I do know that we are more determined than ever to give Grayson the happiest life we can- however long or short it is. And this little guy certainly doesn’t know anything has changed. We just love him so, so much and will celebrate his life every day (and big time next Saturday when he turns TWO!).
Photos by Rebecca Kline Photography
I know you are tired of looking at pictures of my little boy asleep in his crib, but he’s just so sweet when he sleeps and I think it’s so funny how creative he gets with his bumpers every night- I just can’t resist sneaking into his room and snapping away. Also, I am breathing a huge sign of relief that this is where he is tonight. We (finally) made it through a school Friday without a medical crisis or major meltdown. Yay us!
We spent the night at my parents’ house last night (like we do every Thursday to cut down on miles/week I drive to school) and Grayson was so worn out from Brown Bear Brown Bear day at school (see his very first *assisted* school coloring project- humor me, I embrace anything “normal” he gets to do) that he slept 14 1/2 hours! I was so proud that we were actually going to be on time even though he woke up 45 minutes before school started but I powered through and got us in the car in time to get there. But by the time I closed the door on G’s side and opened my driver’s door, he and his carseat were COVERED in vomit. Sigh. Back in the house we went. Even so, we managed to only be 20 minutes late and I left him happy (read: not crying). Success!
When I picked him up at 3:00, he was sitting on his teacher’s lap intently listening/looking at a book on her ipad. She stood up and when he heard my voice he smiled, popped his thumb in his mouth and lay his head on his teacher’s shoulder. It was the sweetest thing, and made me so happy that he is getting comfortable at school.
*Thursday update: I had my OB appointment and ultrasound. My sister in law went with me, who had never seen a baby ultrasound, so that was a fun experience for both of us. We were walking out and I realized I forgot to ask for a picture- aaa! I do have my anatomy scan week after next, which will give me much better pictures anyway, so I’ll just post those when I get them. Anyway, baby looks great- was wiggling around which was great to see. We are not finding out the sex this time and my OB refused to look for herself- said she would have too hard of a time keeping the secret- ha!
**Wanted to share my “Counting my Blessings/Keeping things in Perspective” moment of the week. Wednesday morning Grayson was having a meltdown and his vision therapist was on her way, so I decided to take him for a walk to calm him down before she got there. It was a beautiful, clear morning and I looked up and saw this, right above our house:
There was another family out for a walk with a toddler about G’s age who was oohing and ahhing over the balloon as he pointed from his stroller. Grayson, of course could not see the balloon and had no idea it was there. Tears filled my eyes as I thought about how much he misses out on, visually. But then, the Whoosh of the burner filled the silence and Grayson startled, looking around for the source of the sound. He hears things. And I am so thankful for his hearing- yes, I get annoyed with his music sometimes, but grateful that he can experience a lot of the world with his ears, if not with his eyes.
Happy Friday everyone!