Help Me

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?

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A Letter To Myself of A Year Ago

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.

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

 

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.