Letters to Charlotte: 4 Months

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

 

Wordless Wednesday: Obnoxious T-Shirt Edition

This Day is a Gift

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.

Special

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.

Mother's Day 2013

Last year, I had no idea that a year later I would be celebrating my third Mother's Day as a mother of two. Never could I have imagined how my life would be turned upside down in the most wonderful of ways because of this little girl.

Charlotte Faith was dedicated at church this morning, in front of our church family, her grandparents, and aunt and uncle. I wrote the following blessing as part of her dedication.

Charlotte,

You are God's precious gift to our family. God knows so much better than we do what the very best plan for our lives is, and He gave you to us when we least expected but most needed you. We promise to provide a home for you full of love, security, and the Word of God. We love you fiercely and pray that you will always seek the truth and that God will richly bless your life.

 

Love,

Mommy and Daddy

 

 

Because we are living with my parents right now, I get to spend a lot of time with my own mom. I love it. She is such a tender, sweet, loving grandmother to Grayson and Charlotte. And she is still such a good Mommy to me too.

 

 

Grayson. My handsome boy who just has been dealt the most unfair hand in life. I am forever humbled that God entrusted his life on earth with me, his mom.

 

 

I love these babies, and I love being their mom. It was the happiest of Mother's Days.

My Grandmother's Visit

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!

Mothering As A Dragon Mom

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.