This past weekend, I had the opportunity to attend the United Mitochondrial Disease Foundation Symposium in Pittsburgh. Since Grayson was diagnosed, I have wanted to attend Symposium, and I am so thankful that the stars aligned and I was able to go. One of the major reasons I especially wanted to go this year was one of my closest Mito Mom friends moved from Houston to Pittsburgh a year ago, and I just couldn’t miss the opportunity to spend a few days with her. I’m so thankful for K-she is probably the smartest and most compassionate person I know, and she has been one of the most influential people in my life since we started this journey.

It was a great weekend. I was able to make connections with people I had only previously “known” on Facebook, meet  new friends whom I felt instantly connected to because of this strange world we live in, and soak up lots of information that hopefully I can use to help Grayson.

I attended as many sessions as I could, and while some of the scientific research information was over my head (those researchers and doctors literally speak a different language!), I really do feel like I have a better understanding of Grayson’s disease and the direction the research to treat/cure Mito is heading. I learned about medical child abuse (and how to protect myself from any accusations)straight from the mouth of Justina Pelletier’s doctor, learned about research being done on autism and mitochondrial disease, and was reassured in the respiratory issues session that we are doing everything “right” with Grayson right now. There was a lot of talk about clinical trials and Epi-743- I am still hopeful that Grayson will have access to this life-changing drug sooner than later. It’s still extremely frustrating that he is not on the drug RIGHT NOW, since it has certainly been life-changing for many with his disease.

I had several really good conversations with doctors, including Grayson’s Mito specialist. We came up with some new ideas of medications and supplements to try, and I was thrilled when I got an email this afternoon from her nurse saying that she was already calling in the new prescriptions. I am so, so hopeful that we will see some positive changes in our little guy in the coming weeks!

It was a wonderful weekend and I am so, so glad I had the experience. And everything went great at home while I was gone- hooray! I’m already plotting how to get to Washington DC for next year’s symposium!

At the banquet Saturday with new friend C and K

This weekend, I attended two social events where I didn’t know the majority of the people who were there. One was a Bunco night fundraiser for a friend’s son’s baseball team and one was actually an essential oils class that I was teaching. At both events, there was a large amount of time to chat socially, and I participated in several great conversations and met some fun people. As most do, the conversations turned to children. How many do you have? What are their ages? Etc, etc. Lately I’ve found when I mention that I have a 3 1/2 year old son, the topics that come up most frequently are how busy I must be chasing after him, that he must be talking up a storm and questioning everything, and oh, how’s potty training going? No, no, and umm…never going to happen.

I find it awkward responding to these statements and questions. I never take offense to any of it- it does make me sad and wistful for what would have been without G’s disease- but I appreciate people taking an interest in both of my children. I just don’t really know how to respond. Right now, I tend to say, “he has special needs and isn’t developmentally where most children are at his age” or some variant of that, and then if they ask, I will tell them more. And I do want them to ask. Because I do want to talk about Grayson. He’s my son, and his life is my life. He’s a person with a story.

Yes, Grayson is most definitely a person apart from his disease and disabilities. Of course he is. He has a personality and a soul. But it’s very difficult (impossible?) to separate Grayson the Person with Grayson the Person With Leigh Syndrome. Leigh Syndrome makes him who he is. When we describe Grayson, apart from his medical symptoms, we say he loves music and loves to swing. But here’s the thing- he loves music and swinging because there isn’t much else that he can love. And whatever is going on in his brain only allows him to love certain music, 95% of which is Veggie Tales. Sure, toddlers and preschoolers all go through phases where they want the same thing over and over, but Grayson has been obsessed with Veggie Tales for over 2 1/2 years. That’s the disease. And he loves to swing because it’s an activity that allows him to experience movement even though his body can’t move in any real, purposeful way. That’s the disease.

So when I talk about Grayson, I have to talk about his disease. Otherwise, it’s like he doesn’t exist. And that probably makes some people uncomfortable. Feeding tubes, wheelchairs, a terminal diagnosis, not having a wait at the ER (lucky us?)- all normal around here. So when I talk about these things- I’m just talking about my life. I’m not looking for sympathy, pity, or to be told how amazing I am. I don’t want to hide my son’s existence, or say he’s doing great when he’s not, but at the same time I don’t want to be a person who makes others feel uncomfortable, or put in a position where they just don’t know what to say. I don’t even know what to say half the time.

I don’t know what the answer is, but I hope that as time goes on, I’m able to find a balance in conversation between honoring my son’s life and his personhood with caring for the feelings and comfort of strangers who have no idea what we are going through. And actually, my bloggy friend J, whose daughters have autism, wrote this post with her perspective on talking to strangers about her situation- I think she has some really good advice and guidelines to follow.

Special needs parents are not professionals- I didn’t train for years for this job before I started raising this precious little person. Just like moms of typical children, I am figuring things out as I go, without an instruction manual. And this includes how to talk to other people about my kid. Just know that I want to talk about my kid as much as you want to talk about yours. I look at him and sometimes can hardly believe how lucky I am that I am the one who gets to be his mom. No one else on earth has that job. It’s hard, yes. I wish it were different, yes. But it’s still an incredible honor.

First time in his wheelchair, at church yesterday. He was SO serious.

I just read over some of my early posts from Grayson’s first year. Over and over again, I was worried about his weight. Until he got his feeding tube, he was less than the 1st percentile and was considered “failure to thrive” at a year old. Putting weight on him was a constant, frustrating pursuit. Of course, when he got his feeding tube, and especially when we switched from a G to GJ tube and he wasn’t vomiting up formula anymore, he steadily gained weight and it no longer was an issue. Over the past several months, I cannot even count how many people have told me how much bigger Grayson looks.

This morning, we saw Grayson’s GI doctor for the first time in months, due to having to reschedule the appointment several times. Today, the scale said he weighs 37 pounds, putting him in the 75th percentile for weight, and based on his height, his BMI is over the 95th percentile. What?!

So the tables have totally turned and now we are not worried about him not weighing enough, but too much. Good grief. Relatively speaking to what all Grayson struggles with, this actually is not a huge deal and should be an easy fix; we are going to cut back on the rate of his continuous feeds by 10% and give him a little more water during the day to make sure he’s getting enough hydration. His doctor doesn’t want him to lose any weight, but just maintain his current weight as he grows taller.

Of course, the sad reality of the situation is Grayson is gaining weight because his body doesn’t allow him to move enough to burn calories. He’s no longer able to push up on his hands or get in the crawling position, or scoot around on the floor. He is wheelchair bound (or the equivalent) all day long. So maintaining his weight will be good for him- less stress on his body that is so uncooperative- and good for those of us who have to carry him around the house and hoist him into the car. I know I say this all the time, but carrying him really is very difficult- 37 pounds doesn’t seem like a lot, but it’s stiff, dead weight and Grayson likes to throw himself backwards from his waist. It’s a miracle we haven’t had any accidents.

We also scheduled Grayson’s next tube change for September. Ever since he got the GJ, we’ve had to change it every six months, almost to the day, and it’s always an “emergency”. I asked if we could skip the whole “tube breaks randomly and we end up in the hospital for a night” ridiculousness and just proactively schedule a change, and he agreed. Thank goodness.

That Grayson- keeps me on my toes for sure. And I guess it’s true that when you are a mom, you are always worried about your kids for some reason or another- even if it’s the complete opposite of what you were worried about a year ago. Oy vey.

We had a crazy busy, but fun and exciting day today.

It started with early morning G-tube surgery for Charlotte’s baby doll. I was a little unnerved because as I drilled a hole in this sweet baby’s tummy, I kept thinking I was like Quinn on Scandal and was torturing the poor thing- but then I mentally gave the baby lots of anesthesia and I’m happy to report she didn’t feel a thing and was already getting bolus feeds (and apparently preparing for rain) 2 minutes after surgery.

My mom is retiring from her years as a teacher/orchestra director, and her school gave her a really nice reception today at the school. Charlotte and I went, along with David, Hannah and Theo. We had a great time, and I’m so thankful that I don’t have a story to tell about Charlotte crashing Theo’s stroller into a crystal punch bowl (saved that one by millimeters!)

So here’s my mom-of-the-year confession of the day. We got home and Charlotte was asleep in her car seat, so I ran inside and quickly poured her a bottle before getting her out. Gave her the bottle, she drank it, took a nap. I went to the fridge later to make her evening bottle, and realized the carton of milk was brand new and the seal was still on it. Then I realized- earlier, I had given her a bottle of half and half! Panicking, I started to google “I accidentally gave my baby…” but before I could type the next words, it autocompleted to several things much worse than half and half, so I decided, eh, she’ll be fine. She probably got her fat content for the entire rest of the month though.

After naps, we had a friend come over and he and Charlotte proceeded to share snacks and beat each other up for an hour. After an hour of “gentle” and “stop that, you two” they left and as they were walking out, here comes Grayson’s wheelchair and stander being delivered. Oh happy day!

G’s new wheelchair is amazing. I just love it. It’s so much easier to adjust and take apart for traveling than his medical stroller- and to me, it looks smaller. And it has his name embroidered on the seat- I love me some personalization! Sweet Grayson was SUCH a good sport- it took a few hours to make adjustments, train me and complete all the paperwork- and he did great. I even got some sweet smiles.

 Charlotte thinks Grayson’s wheelchair is the best thing ever. Not pictured: the meltdown due to me suggesting that we give Grayson a turn in his chair.

And the verdict is still out on whether or not he likes the stander. Going to take some getting used to.

I’m so happy for my sweet boy- I’m really hoping the chair will make him more comfortable and the stander will make him stronger (and give him a different perspective).

Yesterday, we had Grayson’s 4 month follow up from his SPML surgery he had in January. At first, the results of that surgery were nothing short of miraculous. Our sweet boy’s legs had been so tight and stiff and after surgery, his legs were loose, and changing him and even picking him up were SO much easier.

However, over the past month or two, I have been noticing G’s legs have stiffened significantly since surgery. They aren’t quite back to where they were, but holding him and changing him is difficult and strenuous again. And as you can see in the picture, his hips continue to shift in this awkward position, making it look like one leg is longer than the other.

The orthopedic surgeon agreed that Grayson is tighter than he would hope just 4 months post surgery- the results are supposed to last 1-7 years. Unfortunately, the only option to get those results back is more surgery, which at this point we are not willing to put Grayson through. I asked if more therapy, or exercises at home would help, and he said in this case, no. G’s body just wants to tighten, and it will find a way.

I am so disappointed that the results of this procedure, which made such an enormous positive impact at first, aren’t lasting. It’s frustrating and is just another reminder that dealing with this disease is fighting a steep uphill battle- we try everything we can, but there are no guarantees anything will be successful long term.

On a positive note, I got a phone call yesterday afternoon that Grayson’s wheelchair and stander will be delivered Thursday! I’m so excited to see him in his new ride!

Oh, and while I took G to his appointment, my friend K was so sweet to offer to watch Charlotte. K is one of my Mito mom friends, and her daughter also has a feeding tube. I knew Charlotte would be in Heaven because they have as many medical supplies at their house as we do. I almost died from the cute of these pictures she posted while we were gone- my little nurse, taking care of a tubie baby. I MUST get Charlotte one of her own!

Dear Charlotte,

I had just gotten used to saying you were 15 months old, and you go and turn another month older! I would say stop that, but in truth, I am loving the stage you are in right now and am truly embracing your toddlerness. For every moment you exasperate, overwhelm and frustrate me, there are a million more moments that you make me melt with your sweetness or crack up laughing with your hilarious antics.

There are so many things I want to remember about you at exactly this moment. To name a few:

• When I go into your room in the morning you greet me with an enthusiastic “Hi!” and immediately point to your bow holder on the wall and say “Bow, bow, bow” until I let you choose a bow. You like to hold onto whatever bow you chose for a few minutes while we change your diaper, but have no interest in putting it in your hair.
• You are walking everywhere now and it makes me sad that I don’t remember the last time you really crawled. You also quit breastfeeding almost a month ago, and I don’t remember our last nursing session either. I’m glad we ended on your terms, but it was bittersweet indeed.
• One of your favorite toys right now is an empty bubble container and wand. It took me awhile to get smart and realize you couldn’t care less about actual bubbles, you just like to put the wand in and out of the tube. “Bubbles” and their sticky mess were driving me so crazy that I finally poured out all the solution and just gave you the empty parts- you love them.
• You have discovered markers and like to use our window markers to draw. You like to do that almost as much as you like to dump out the bag of markers all over the floor (along with anything else that makes a giant mess)
• You love to eat and have recently started going to the refrigerator, pounding on the door and yelling “Mooooooore, moooooooore” until I get you a snack (you LOVE snacks). It’s both annoying and endearing. You know how to say lots of food words, but your favorites are “waffles”, “cheese” and “apple”.
• You now almost exclusively call Grayson “GG”, which is adorable, but occasionally he is “Bubba” as well. You have gotten SO MUCH better at being gentle with him, and are really becoming quite the little nurse/caregiver. If he so much as coughs, you will fetch a blanket and put it to his mouth (we use blankets to catch his throw up).
• You love going to get the mail and squeal when we open the front door to take you to the mailbox. You take your job of holding one piece of mail to “give to Daddy” very seriously.

At 16 months old you:

• Weigh 23 pounds, 6 ounces
• Wear 18 month and some 24 month clothes, and 24 month pajamas
• Wear size 4 diapers
• Still only have 4 teeth
• Eat three meals + one or two snacks a day, and 2-3 bottles of milk a day (I have NO IDEA how we are going to wean you off the bottle, as you adore it)
• Sleep 12 hours at night and take one nap

Charlotte, when I just had Grayson, I couldn’t imagine that I could love another baby as much as I love him. Then you were born and now I realize how silly those thoughts were. But the other day I was thinking those same thoughts again- how in the world would another baby measure up to you? You are so wonderfully perfect for our family and continue to bring us so much joy (and keep us busy, busy!). I love you so, so much sweet girl.

Love,
Mommy

Photos by Krytondra Mamou Photography

A friend of a friend passed down her play kitchen and shopping cart to Charlotte. She was smitten from the start. I tried to actually play “kitchen” with her- cooking, chopping vegetables- but all she wanted to do was dump out all the food and pots and slam the door over and over. Whatever.

My babies, swinging at the park. I’m so glad Grayson still fits in a toddler swing- we swung him for a long time and he seemed to really enjoy it.

I bought these matching dresses for Charlotte and me on Zulily a few weeks ago, and they came Saturday. We wore them this morning to church- so fun! I think I may become addicted to finding more matching outfits for me and my girl!

I realized I haven’t given a medical-type update on Grayson in awhile. The amazing truth is that he’s doing really well, and there isn’t a whole lot to report. He hasn’t been sick, hasn’t been in the hospital in almost 2 months, and is relatively stable. Of course, in our world, no news is, in fact, GREAT news.

A few months ago, Dr. K started him on a medication to dry up his secretions (saliva, excessive drool) with the thought that it would help his vomiting too. She thought right. While Grayson is still throwing up 2-3 times a day, it’s worlds better than the 5-6 times a day before the medication. We saw Dr. K Monday and while she was thrilled with the improvement, in her words, “I don’t want him throwing up at all.” Yeah, that would be nice. So thankfully there’s room to increase the medication, so we are going to see if that helps get that number down to zero! Fingers crossed.

Grayson’s seizures have also stayed away. I think back to just a year ago when we were dealing with seizures on a fairly regular basis, and I’m so thankful for this huge improvement. I credit finally finding the right medications and dosages, and the Frankincense oil we diffuse at home.

Grayson seems to be a little more connected to people lately as well. A year ago, that horrible seizure/fever illness stole his precious little personality and smile, but we are seeing glimpses of its return lately. He’s even smiling sometimes when his sister hugs him and kisses him- amazing!

One thing that isn’t so great is that after a few months of miraculous results from his surgery in January, he’s starting to stiffen up again. His legs are still a LOT looser than they were pre-surgery, but both his PT and I have noticed that he’s tightening up again. We see the surgeon for a follow up next week, so hopefully I can gain a better understanding of why this might be happening and if there’s anything we can do to reverse it.

Yesterday, I pulled up to Grayson’s school to pick him up and he was finishing up with his PT. I could hardly believe what I saw- my little boy, my Grayson, riding a bike! I had seen these special needs bikes being used by other children, but never even considered that Grayson would be able to ride one too! I took some pictures and a video, but then later at home, got really emotional about the whole thing. Riding a bike is such a normal-kid staple of childhood- and Grayson got to do it! He was so solemn while he rode- I was trying to imagine what he must have been thinking, and feeling. I’m sure it was a weird sensation for his little legs! Hopefully there will be many more bike rides in G’s future- and a way we can get him a bike of his own!

This week I am sharing Grayson’s story at a fundraiser for research for Leigh’s Syndrome. I’m excited and honored to talk about my sweet son, who is definitely a hero and undoubtedly has touched and will touch so many lives. I couldn’t love him more.

With Mother’s Day just days away, I’ve been thinking about this role that I’ve had the privilege of holding for over four years now (because yes, I absolutely count the year I was pregnant with Grayson as my first Mother’s Day). I’m living my dream; I’m a mom to two beautiful, awesome kids, who challenge, exhaust, and delight me daily. They stretch my patience, my checkbook, and my heart. They are my reminder what is good in this world, and motivate me to make this world better, for them.

In the early days with Grayson, I felt like I was constantly being forced to make really hard decisions, but at the same time didn’t feel comfortable questioning doctors or more experienced special needs parents’ advice. I’ve lost count of how many tests we’ve run, medications we’ve tried, and the number of times he’s been put under anesthesia. Sure, there are things I regret, that I would have done differently had I known then what I know now. But I can honestly say that I did the best I knew how at the time. Sometimes, in my darkest moments, I panic that there are things I did or didn’t do when Grayson was a baby that would change how things are now. Logically, I know this isn’t the case. No amount of time spent on exercises or therapies is going to change what’s going on in his body at a cellular or genetic level. But still, I’m his mom. Why can’t I make life easier for him?

I know that there are people who disagree with decisions Ryan and I have made regarding the care of both of our children. I’m sure there are people who think we’ve put Grayson through too much testing, and that we didn’t try hard enough to keep him eating by mouth. We’ve been to two doctors appointments in the past few months where end of life care was brought up. This is something that is extremely difficult for me to even think about, let alone decide anything. We did decide a year ago that keeping Grayson happy and comfortable was our goal for his life, but what this means as far as concrete lifesaving measures, I don’t know. Of course I can say abstractly “what I would do” but really, we are going to have to decide some day what we will do. With our child. Our Grayson. It’s a lot different when you are holding and kissing the face of the child that these decisions will impact forever. And it’s gut wrenching to think that no matter what we choose, there will be people who will judge us for doing it wrong.

I want people to know that every medical and wellness decision we’ve made for our children has been with a lot of research, discussion, thought, and prayer. And instinct. I think far too often our instinct as parents is drowned out by the noise of the opinions of others. But I truly believe my mother’s instinct is God given and that God has equipped me to take care of the children he entrusted me with on earth.

These are my kids, and I am their mother. I am always willing to talk about what we do and don’t do regarding their care. I’m passionate about sharing what is working for us, especially with those who are struggling with a sick child. I know I’m a good mom, and I’m doing the best I know how with the knowledge I have gained in the past few years. I won’t let the implications that I’m a bad mom, because I’ve made decisions different than someone else did, hold any power. And I’ve come to realize what a precious gift it is to have friends and family love and support me, even when they disagree with choices I’ve made for my family.

And when it comes down to it, it’s all about these precious little people. They are worth the frustrations, the doubts, the sleepless nights, the hours of research, and the conflict. I would do it all again, and I will do it all again.