Lots of friends came over to meet Selah Grace! She and I were both very tired on Saturday evening after all the socializing. Brian suggested going to get the vinyl letters (YAY!!!!), but I barely remember the trip since I slept in the car the whole way.
She slept SO great on Saturday night! We really meant to go to church on Sunday morning, but when she fell asleep first thing in the morning, I took that opp to take a really long nap with her. And woke up to a clean house and warm grilled burgers from Brian. He is SO AWESOME.
Sunday night we did get to go to church. On the way, I checked my voicemail and it was a sweet college friend of mine. After that, I was a mess. I cried all through praise and worship.
There's something about the vulnerability of total reliance on God.... it's just a crazy place to be.
Crazy isn't the right word.
I don't know what is.
Anyways, being in the Word, being in God's house, being surrounded by His presence.... it's a place of peace for both of us. And we just held each other. While God held us.
One thing we know we need to do is get with some friends who have walked this path before us. We've heard sad news about other babies before and felt so sad. But it's NOTHING like experiencing it with your own child.
And I
I asked the pediatrician on Friday, "So, her case just seems so mild. What's the possibility this is all wrong? Or are we just in denial? haha....."
And he said (very gently - he's really nice), "Don't be in denial. It's something."
And it's hard to find the line between HOPE and REALITY. We have hope. We are told to have hope. We are relying on hope. But His hope doesn't mean we'll have a free pass through life.
And it's sometimes hard to find 100% JOY. Because there is this something nagging. And when people see her - like at church last night - she looks so cute and sweet and so perfectly healthy. And we want to have joy and pride in showing her off and gushing at her with others. But in the back of our minds, it's like - well, she's got this thing. And we just want to protect her and shield her and be defensive of her.
I know Brian's at work today, probably not working much, but rather fielding office visits from congratulating coworkers, and showing her picture, and sharing about his crazy screaming wife in labor. But I saw in his eyes this morning the reluctance of dealing with all that, and not being able to have the glowing innocence of a brand new father. And how each time someone stops by his office today, wondering if they know... and if they know, will they bring it up?... and if they don't, do you say something?... And it just clouds it a little bit.
And then there's the "at least she doesn't have ___" or "at least she isn't ____." "It could be so much worse." and "oh, my kid gets a rash all the time."
Even Brian and I will say to each other things like, "special needs children are SO sweet and positive, and they work so hard through challenges with amazing perseverance!"
Like we wanted her to learn perseverance this way.
Maybe we are learning it instead.
ANYWAYS.
We went to pick up Zac, and took him out for some mexican food. We do this every other Sunday. It's a late dinner for him, but his schedule is usually so messed up at this point, that another late bedtime is just par for the course. Then he falls asleep on the way home, and we can have a fresh start on Monday. It was great to see him and he was SO excited to see Selah Grace. She did awesome and church and through dinner.
Once Zac fell asleep in the car, she lost it. We pulled over to nurse her (and change the explosions from her diaper), then she cried the rest of the way home. This is the 2nd time she's been really fussy after a Mexican restaurant. We don't think she likes it. Makes Brian so sad! (we have, like, FOUR mexican restaurants that we visit regularly.....lol)
Selah Grace had another wonderful night last night. And we managed to get Brian out of the door this morning, somewhat on time... kind of... But I got a shower before he left, which was really important to me!
We have nothing planned today, except for a Walmart trip. Which I hope we make it through! And I have to get on the phone with insurance (good times) to get all these new doctors cleared and appointments set up.
My c-section recovery is going really well. I'm off pain pills. I am up and around just fine. Brian had to help me in and out of bed for a while. Going from vertical to horizontal (and vice versa) was SO painful!! But that's getting a lot better. The stairs aren't as hard anymore. And I still can't carry Zac, or Selah Grace's carrier, but I'm sure I will soon. I'll just have her in a sling today at Walmart. Keeps the crazies away. ;)
Off to cuddle with my sweet boy before my angel baby wakes up!
4 comments:
I have been praying tons for you guys! And Selah is PERFECT in every way! I can definitely empathize with some of the emotions you are going through, but just know you are loved and cared for by so so many. And you will find much strength that you didn't even know you had. Your post today is beautiful emotions.
You are in my prayers.
I promise you as a special needs mom myself the unknown is by far the worst...once you get the big picture the mommy bear comes out and you jump in and do anything and everything you can do.
Here is something I love and I think it sums everything up perfectly....
Welcome to Holland:
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
"I asked the pediatrician on Friday, "So, her case just seems so mild. What's the possibility this is all wrong? Or are we just in denial? haha....."
And he said (very gently - he's really nice), "Don't be in denial. It's something.""
Hi Sarah - I don't mean to give false hope or underestimate the doctors you've seen but when I was pregnant with my now 5 year old son (I was on the 9/04 BBC board with you), we were told he had Dandy Walker Syndrome, Downs Syndrome, Ventriculomegaly and/or Achondroplasia. We were told point blank by a geneticist that there "had to be something wrong" due to the various symptoms. Long story short - we went through an absolute NIGHTMARE and there isn't a single thing wrong with him. Nothing!!!
I find it terribly disturbing that your pediatrician and dermatologist can give a diagnosis for such a serious and complex condition simply based on a rash. If they did, then shame on them. If there's more to the story than I can see, then my apologies.
Anyway, I am all to familiar with doctors speculating and covering their behinds AND I am familiar with the condition you are talking about due to all my research into Achondroplasia and other skeletal disorders. Do yourself and your family a favor, get a genetic test for her(simple blood draw), see a skeletal specialist and if possible get an MRI. It's the only way you'll know for sure.
Whatever the outcome, I wish only the best for Selah and you and your family. I just wanted to share my story because the one thing I didn't do was take control of the situation, ask more questions and be more challenging. I wish I had. I hope you do.
Best to all of you.
Stephanie
Sweet friend! I really want to see you and hug you! :) Know that I've thought about you guys and prayed for you often. I can totally relate to a lot of the feelings you're going through. There will be days that are hard, even after several months. Know that you can call if you just need to vent or just want to talk about something totally random! :) Let's get together soon!
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