Internet, I need your help.

I’ve been thinking about changing the name of my blog for awhile, since the current one doesn’t exactly fit our current life circumstances. I picked Snips, Snails and Puppy Dog Tales when I was pregnant with Grayson because 1. I was having a boy and 2. there were a LOT of puppy dog tales (and tails) in our house at the time.

Now, I have a girl in addition to the boy, and as of a few days ago, no more tails. We finally decided to let Hank, our last remaining dog of the four, go to a new family. He’d been boarded since Charlotte was born, and last week went to live with a foster family who has acreage and a pond, ideal for a bloodhound who loves to run and explore. Due to other circumstances, we aren’t moving any time in the near future, so it’s time to let him go permanently. Again, a hard decision, but the right one.

So I need a new name, but I am awful at coming up with clever names (seriously, sometimes I’ll have a post written but it takes me another 20 minutes to come up with a title, ugh.).

I want something catchy but not cheesy. I don’t want my name or the names of my kids in the name, nor do I want it to have Mito in the name (because I do write a lot about Grayson and Mito, but I don’t want it to be the only focus of the blog).

Also, I know a lot of people say WordPress is soooo much better than blogger- why is that? Is it a ton of work to switch over and transfer your posts? Or what about buying  your own domain name- is that expensive? I’ve been blogging for almost 3 years now, and evidently I am still clueless.

Any brilliant suggestions out there?

Dear Elizabeth,

Your stomach is in knots. In just a few minutes, your husband is going to walk in the door with the pregnancy test you called and told him he better pick up on the way home . He will want you to pee on that stick right away, but you will be too scared. I know, you don’t want to know. So you will go out to lunch to delay the inevitable a few more hours, but when you get home, he is going to insist. Might as well just do it and get it over with.

You’ll activate the test but leave it in the bathroom, then come out and try and distract yourself by playing with Grayson. You’ll make Ryan go back in to check the pee stick, and he will come out minutes later with a poker face. He’s going to be so nervous to tell you, because he has no idea how you are going to react. Finally, without a word, he’ll just nod, with a little half smile on his face.

Yes, you’re pregnant. Of the things you had planned for this year, that doesn’t even come close to being on the list, does it? I know you want more kids, but not now. You have an almost 2 year old who has just been diagnosed with a horrible genetic disease that has no cure. You are going to find out in a few months that he actually has the form of that disease that is fatal. He’s tube fed. He has seizures. He can’t sit up on his own, crawl, or talk. He has a million therapies and doctors appointments a week. You just decided he’s going to go to school in the fall so you can get a freakin’ break. You’re tired. Another baby is the last thing you need, or want, right?  It’s going to be fine. Yes, you’ll be tired, and stressed, but you’ll figure it out.

Over the next week, you are going to cry a lot. Any time you allow yourself even the littlest excitement, you are going to remind yourself of all the reasons why this is a disaster. After all, what if this baby is sick, too? What are people going to think of you for allowing another baby to come into the world who may suffer like your first child? You are going to be so scared to tell your mom, because you think she’s going to think you’re irresponsible, and when you do tell her, you are going to burst into tears. It’s going to be fine. She’s a Mom, and a Grammie, and she’s not going to be mad.

This summer is going to be hard. You are going to be a lot sicker with this baby than you were with Grayson. You are going to feel guilty that instead of playing with him, you are letting his nurse take care of him while you hug the toilet or bury yourself under the covers. When you aren’t sick, you are going to be starving and wanting to eat everything in sight. It’s going to be fine. You’ll survive, and you’ll start to feel better right on schedule, at the start of the second trimester. Oh, and by then the shock will have worn off and you’ll actually start to be excited about and love this new little life inside you.

September is going to be the hardest. Grayson will get his Leighs diagnosis and the fear of the unknowns will creep back in. You’ll be feeling the baby move by then and will spend a lot of time worrying what’s going on with his or her development, beyond what an ultrasound will show. In October, you are going to have the anatomy scan and genetic counseling. It’s going to be fine. You will learn absolutely nothing about where Grayson’s disease came from and will get no answers about the baby in your belly, other than everything looks great on ultrasound. You’ll resign yourself to the fact that God gave you this baby for a reason, and He’s going to take care of it, sick or not.

You are going to decide not to find out the gender of the baby. Good decision, because that moment when he or she is born and you’ll hear “It’s A ____” is going to be the best. The absolute best. And if it’s a boy, you already have tons of clothes for him. I know you are worried if it’s a girl you won’t be prepared, but trust me, within a few days of her birth, you will probably be very jealous of the size of her wardrobe. If it’s a girl, that is. I know you say you don’t care, and you just want him or her to be healthy, but you really want a little girl. It’s going to be fine. God put that desire in your heart for a reason.

This fall, there will also be some drastic life changes in addition to your pregnancy. After finally being honest with yourself about your limits and what is best for your family, you will make the incredibly hard decision to find new homes for the dogs. They will go to fabulous new families and although you will miss them, it’s the right decision. Definitely. You will sell your house, and the day before the baby is born, you will move in with your parents while you search for a new home. It’s going to be fine. You will have much-needed help with the kids and you and your mom will grow closer. And I know you will find the place where you are supposed to live at some point, so don’t worry about it too much.

So yes, right now, your stomach is in knots. You have absolutely no clue what you are going to do if that test is positive. But seriously, it’s going to be fine.

More than fine.

Dear Charlotte,

Um, I guess you somehow got the memo that today you turned 4 months old, because wow, you have really turned it ON today. You have been babbling and cooing all day long- I think you are going to be quite the chatterbox. With your new hobby of talking, talking, talking, you also decided today that naps are apparently for the birds. Good thing you are so cute, because I am utterly exhausted tonight.

You still love to eat, and are so far exclusively breastfed. You are a petite little girl, weighing 11 pounds, 4 ounces. You wear 3 month clothes and size 1 diapers. You have started to show some interest in toys, particularly ones that light up and play music (hmm, sounds like someone else I know). You can roll over, but you hate tummy time so much that you don’t show off that skill very much yet.

Last month, our schedule and routine were disrupted for a few days because your brother was in the hospital. I was so proud of you- you were an angel and just rolled with it, even though you never knew where you were going to be taken or wake up. It’s taken us a few weeks to get back to where we were before as far as sleeping goes, but I think we’re just about there. You usually sleep a 7-8 hour stretch and then another 4-5 before we get up in the morning.

It is one of my greatest joys to watch you develop and hit milestones. You are spunky, active and opinionated- exactly what this family needs. You are beautiful and I love you so, so much. Happy 4 Months baby girl!

Love,
Mommy

Last Friday, Grayson had an appointment with Dr. K, his Mito specialist. The appointment had been scheduled prior to his hospital stay, but much of our conversation centered around what happened two weeks ago.

Dr. K confirmed that the situation was as scary as I thought, and at some points may have been even scarier. She said you don’t get that many doctors in your room at one time unless they are really concerned. His body was shutting down.

We truly could have lost Grayson.

We talked about Grayson’s life, and then his death. Unfortunately (fortunately?) we have no way of knowing how long we will have with him. He could get very sick again and not be able to recover, or he could keep slowly declining for years.

Dr. K said,  We need to look at every day we have with him as a gift.

I know it’s cliché to say I’ve been hugging him a little tighter since Friday, but I have. No one has forever with their child, but when you know your time is going to be considerably shorter than most, there’s just a different perspective.

One of my favorite things to do is watch Grayson listen to music. I need to post a video sometime of his face when he realizes he’s about to hear one of his favorite songs. It’s precious. He’s so happy, so innocent. He makes an Mmmmm sound at his favorite parts. If I’m singing to him and stop, he literally slaps my mouth like it’s a giant “Play” button to get me to start up again.

Music is God’s gift to Grayson, and every day I have with Grayson is God’s gift to me.

I pray for many, many more gifts, filled with smiles, giggles, and songs.

I have a lot of people tell me that I’m an amazing mom. That I have incredible strength and handle our situation with such grace, and that Grayson is lucky to have me as his mother.

I so appreciate these words of affirmation and encouragement; some days, they are what keep me from collapsing in a puddle of tears on the floor.

And I do know I’m a good mom. I love my children with everything I have, and without question, I would trade places with Grayson and take on his suffering if I could.

But I’m not special, and if you were a fly on my wall, 99% of the time, you would not think I am amazing.

I get frustrated and impatient. I cuss at Grayson’s pump when it beeps for no good reason in the middle of the night. I’m on my phone too much. I look forward to bedtime and pray my kids will sleep just 20 more minutes in the mornings. I’m excited at the prospect of having a child who will actually watch television.

So, I’m just like all you other moms with typical kids, I just happen to have atypical circumstances to deal with.

I had a friend email me last week who said when she reads my blog she is inspired and wonders if I hate people with typical kids complaining about their problems. I can honestly say for the most part, no. Sure, when someone goes on and on about their kid’s ear infection or stomach bug like its the end of the world, I kind of roll my eyes and think, Yeah, try holding your child while he seizes for 30 minutes and then tell me an ear infection is a big deal. But really, parenting is hard, whatever your circumstances are. I haven’t yet dealt with two year old tantrums, kids eating dog food or writing with Sharpie on the wall, or junior high girl drama (but it’s coming…eek). Truthfully, today the thought those things scares me more than catching vomit in my bare hand or pushing medicine through a feeding tube- because well, I do those things, and it’s just normal for me. Not special, not amazing, just my normal.

Grayson’s disease has made me a better person, but I am not thankful for Mito. I hate it. My little boy suffers every day because of it. Mito will cause our family devastating grief some day. I don’t want to be amazing, or inspiring, or special. I just want a healthy child.

But, I also hope that if I am seen as an amazing mom, that I am just as amazing to my healthy daughter as I am to my sick son. Charlotte deserves the best just as much as Grayson does.

Really, I’m just trying the best I can to deal with the circumstances I’ve been given, as would most people in this situation.

With all the craziness of last week, I forgot to post about the beginning of the week, which was actually quite wonderful. I guess it’s actually been two weeks now (yikes, time flies), but my grandmother came for a visit and we went to the ranch for the weekend.

Aside from Grayson having a bad seizure just minutes before she and my dad arrived, we had a great time, and I loved watching my Grammie love on my kids. She is so good with both of them, and I especially loved how tender she was with Grayson, and how much time she spent with him. It’s hard to “play” with Grayson, but she was so patient and just kept right on talking to him and replacing toys that he dropped.

And of course Charlotte loved all the attention she got from her Great Grammie.

Sadly, while she was here, my grandfather broke his hip at the nursing facility back in Michigan where he was staying while my grandmother was here. I was running late Tuesday morning and rushed out the door with the kids, with just a “See you tonight” for my grandmother (she wasn’t supposed to go home until Wednesday). I found out later that morning that she and my dad left to fly back to Michigan to be with my grandfather, and then that afternoon Grayson was in the hospital. So I never got to properly say goodbye.

Grammie, I know you will read this, so I just want to say how wonderful it was to spend time with you. I’m so glad you came to visit (and I’ll always remember our adventure in the woods!). Thank you for being so patient and loving with Grayson and Charlotte. I’m so sorry life is so difficult right now, but just know we love you and Papap so much. Hope to see you again soon!

This post was written for PAIL’s feature this week- Mothering: A Tribute to the Cause.

When PAIL called for submissions on mothering a few weeks ago in honor of Mother’s Day, I signed up, not really knowing what I’d write about, but figuring I’d come up with something by the deadline. Now, here I sit the night before my post is due, and my thoughts are jumbled, my emotions are all over the place, and I’m tired. Really, really tired.

For those of you who aren’t regular readers of my blog, I am a mom of two beautiful children, Grayson (2 1/2) and Charlotte (3 months). While Charlotte is typically developing and healthy, Grayson suffers from Leighs Disease, a rare and fatal form of Mitochondrial Disease.

Grayson got very sick very quickly last week and we spent the majority of the week in the hospital. I am running on fumes today, desperately needing a day of rest and to take care of myself. But Grayson’s needs are constant, and he never gets a break from the disease and symptoms that are ravishing his body and stealing his future.

It’s taken months, but I’m finally realizing and admitting to myself that I am a Dragon Mom.

I read Emily Rapp’s NYT article months before Grayson’s diagnosis. If you haven’t read it, it’s beautiful and heart wrenching. And now that I’m living it, I can say that every word is true.

Rapp writes, How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

I mother Grayson in the present. I never think about or look forward to him going to kindergarten, playing t-ball, or learning to drive. Because he won’t ever do those things. There are no goals for him and no expectations except to keep him happy and comfortable. There isn’t even any expectation of progress, because we are at a point where Grayson’s skills are going backward instead of forward.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss.

Before I had Grayson, my mothering goals were definitely performance driven. My kids were going to be well dressed, polite, social, smart, etc, etc. Grayson has taught me that while these things are wonderful (and yes, I still want all of them for Charlotte), they are nowhere near as important as ensuring a child feels loved, protected and worth fighting and sacrificing for. When I hold Grayson’s stiff body in my arms and make contact with his eyes that involuntarily shift back and forth, I’d like to think that he knows I’m just a little different than anyone else in his life; that I love him more fiercely than anyone else, because I’m his Mom.

I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today.

Motherhood has changed me. My mothering story so far is one of incredible highs and devastating lows. I’ve been forced to begin to prepare for the day where my firstborn won’t physically be with me on earth, although I don’t really think anyone can truly be prepared for such loss. But until then, I will love Grayson for who he is today. Because today, he’s here and he’s adorable, sweet, funny and because of him, I will celebrate my third Mother’s Day this week.

Tuesday morning Charlotte and I dropped Grayson at school and picked up some of our friends and drove down to Galveston for the day. We had a lovely morning sitting on the beach, chatting with friends, and watching two toddlers play in the waves. That morning now seems like a million years ago.

We were on our way back to Houston when I got a call from Grayson’s teacher that he was having a seizure. Unfortunately, this is not uncommon for him so I wasn’t too concerned. My mom was supposed to pick him up so I just told them to give him Diastat and keep him comfortable until she got there. About 20 minutes later my mom called- he was still seizing. I dropped my friend and her kids off and rushed to school. I held Grayson in my arms and he was burning up. We are told anytime Grayson has a fever to immediately bring him to the ER. Fevers are very dangerous to kids with Mito. Grayson hasn’t had a fever since just after his first birthday, so I knew this was serious.

We rushed him to the hospital and minutes after we got there they started IV fluids and took a lot of blood. Tuesday night his temperature was 103.6. He was admitted and we were told we would be here at least 48 hours waiting for the blood culture results to come back.

Wednesday, it was obvious Grayson was miserable. He wasn’t having any more seizures, but was vomiting, running fever and diarrhea. Late in the afternoon he was getting worse, not better. His Mito doctor and his immunologist came in the room, along with what seemed like a thousand other doctors. Everyone was talking, I was holding Grayson and he was screaming in pain and was burning up. It was hard for me to hear what the doctors were saying over the screaming and they were all wearing masks so I couldn’t even try and read their lips. Dr. K gave me a hug and told me very seriously they were very concerned and Grayson needed to be moved to the PICU. It was obvious the situation was urgent.

They wheeled him out of the room in his bed and we weren’t able to see him for about an hour. When we were finally able to go to the PICU, he had a new IV in his neck and bags of ice covering his body. He was still screaming and moaning. His whole body was so pale and his eyes were purple and puffy. It was AWFUL. That night, we spent hours trying to get his fever to come down. He had a probe in his bottom so they could monitor it constantly- I was obsessively checking the screen. His temp was hovering right at 104.7 for what seemed like forever. They started him on heavy antibiotics, IVIG infusions and kept putting ice on him. The scariest was when he stopped screaming when the ice went on his skin and was non-responsive. I stayed with him that night- my mom took Charlotte home to sleep and Ryan stayed in the Ronald McDonald house.

Yesterday morning, he woke up a different kid. He was still super grouchy (can  you blame him?) but his fever was gone, and he had color back in his skin. He spent the day listening to Veggie Tales, whining about being stuck in bed for 3 days, and sleeping. In the PICU, I couldn’t bring Charlotte in the room, so yesterday was kind of a juggling act having her cared for. But I have wonderful friends and family who helped us out- trading off sitting with Grayson or holding Charlotte in the waiting room. And I have to give props to Charlotte who has been a rockstar little sister- she just goes with the flow and doesn’t complain about anything unless she’s hungry. Sweet girl. Today, she is at Grayson’s school for the day. His teachers generously offered to take care of her- love them.

Grayson was moved from the PICU back to a regular room last night. Everything still looks good- all his cultures have come back negative, he has been fever free for more than 24 hours now, and is tolerating his feeds. We will most likely get to go home later today.

I spoke with Dr. K yesterday and she said this whole thing probably has more to do with his Leighs than a virus or bug. She wants us to do an MRI in a few weeks to see how much the disease has progressed in his brain. While I want to know (I always want to know), I am terrified of what it will show, and how many more of these scary days we will have to endure. At one point Wednesday I was terrified Grayson wasn’t going to survive the night. I am just so thankful we live in Houston, where our hospital KNOWS Mito and knows that a fever in a Mito kid is not like a fever in a typical kid. And now I know how FAST things can go downhill.

I pray we can go home tonight and all get some rest this weekend- we are exhausted!