Clay

I seriously love my daughter. She’s a total rockstar. She is rocking therapy, trying to sit up more and more, rolling over, sleeping on her stomach, playing while on her belly like it’s no big deal and she’s eating food (not a ton, but a few tablespoons for breakfast, lunch and dinner).

Unconditional love. I learn what that really means every day. Reagan has taught both Rob and I what it means.

Most parents say they possess that level of love, but they don’t always. You only know if you possess it when you’re tested. When times get tough, people (not just parents) throw in the towel, walk away, call it quits. I’ve witnessed it. I’ve watched adults say “it’s too difficult, I can’t deal,” and walk away from their kids, their marriage, their friends, their job, etc. Believe me, there were times I questioned my Mom moxie. I didn’t know if I could take this task on, wake up another day and do the whole routine again, but it’s the task I was given from above and I am not going to quit on my daughter.

Asking “why” happens less and less, it’s still there, and I still ask it, but there is no answering that question. I can’t go back. The questions we ask now are, where to? What next? How can we___? (fill in the blank).

The other night Rob and I watched Reagan on the monitor and we just gushed over her.

Rob: I love her!

Me: Me too. I sometimes forget that she has GA-1, b/c now that she’s gone through a metabolic crisis, the effects of that seem to trump the GA-1.

Rob: I agree. But I wouldn’t change anything, b/c she’s still Reagan and she’s ours.

We discussed that with GA-1, you never know what the life expectancy will be, and it can vary greatly based on whether or not you have a crisis. She’s had a crisis. We are trying to help her overcome all her new hurdles, but she may have lasting effects. We don’t know. And it could happen again. That’s where fear can creep in. Not many people have to wonder if their child will make it out Ok from having a fever, a cold or a virus…

While Satan would love it for us to go into a downward spiral of fear, we just can’t live there permanently. We are human, fear will creep in, but I’m not going to make a tent at fear’s doorstep. God tells you not to be afraid, he’s conquered everything. He asks for complete trust and reliance. It doesn’t make earthly, human sense to not worry about the future in an age where “prior planning prevents poor performance.” That’s a lie by the way…in case you didn’t notice, we planned the heck out of everything for Reagan. Ultimately, God has the final say so.

Who in the world do you think you are to second-guess God? Do you for one moment suppose any of us knows enough to call God into question? Clay doesn’t talk back to the fingers that mold it, saying, “Why did you shape me like this?” Isn’t it obvious that a potter has a perfect right to shape one lump of clay into a vase for holding flowers and another into a pot for cooking beans? If God needs one style of pottery especially designed to show his angry displeasure and another style carefully crafted to show his glorious goodness, isn’t that all right?
– Romans 9:20-22

I’m currently obsessed with a new song by Francesca Battistelli called “Write Your Story.”

Part of the lyrics go like this:

I’m an empty page
I’m an open book
Write Your story on my heart
Come on and make Your mark

Author of my hope
Maker of the stars
Let me be Your work of art
Won’t You write Your story on my heart

As I was listening to that today, I thought that in order for God to write his story on my heart, my heart needs to be open, needs to be moldable…it needs to be like clay. It can’t be hard, it can’t be cold…it has to be receiving to the hands that are making it into something new and something beautiful. It has to be accepting of God’s plan, welcoming even.

The lyrics continue:

My life
I know it’s never really been mine
So do with it whatever You like
I don’t know what Your plan is
But I know it’s good, yeah

As I was visiting with my amazing friend Karen today, who flew in from Dallas and made it a point to see me, I told her that this song is speaking to me. My story, what God is doing in my life…I might not see the greatest benefit from it. I might have to go through all this crap for it to impact someone more than me. But I KNOW God is using it for something bigger than just the three of us. I am really encouraged to hear how our story encourages others. But honestly that’s hard…I just want to have fun and have things be easier. I see other kids Reagan’s age picking things up, walking, using their fine motor skills and it’s cute and it makes me wish that for Reagan and for us. Fine motor skills are not Reagan’s forte at the moment; banging two things together, a once enjoyable thing for her to do, is now difficult. I wish for and pray for a prettier road to travel, a lot.

Karen and Reagan <3
Karen and Reagan
yay for Karen!

Karen wisely said, “God didn’t do this to Reagan to make your lives hell,” even though I sometimes feel like we are grazing along hell’s brimstone some days, God is holding us up and out of that fire. Going through this makes me realize how fragile life is, how really incapable we are as humans and how in order to really see God and get through just ONE day, I need Jesus propping me up with his arms.

If all God did for me was send his son Jesus to die, so that I don’t have to have one pinky toe in hell, wouldn’t that be enough? Isn’t that more than enough for the creator of the universe to do for me, for everyone? And yes, that’s the big picture and in the grand scheme of life and eternity, our story is just a tiny stretch of road and this won’t be our life forever.

For now, we are simply enjoying Reagan and who she is. She’s Reagan, a beaming ray of light. She lights up a room and God is using her to transform us and he’s using her to do things we don’t even know about. I am proud of her and proud to call her my daughter, and so is Rob. We are blessed b/c she’s here with us. Not all parents can say that about children that have gone through a traumatic event. But God never fails…he never has, and he’s not going to start with us.

One month

Yesterday was one month since Reagan had her metabolic crisis.

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One month.

 

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And it’s been two weeks since we’ve been doing this on our own. Seems like a lifetime. I can’t believe how long those two weeks have felt.  The farther we get away from April 8, 2014, the further and further we get away from who she was and we continue to learn about who she is.

She’s awesome. She’s determined. She’s a fighter. She’s a warrior. She’s gone through more difficulty in one month than I have in my entire life…than most people ever will go through. And through it all, she’s still sweet. She’s kind. She likes to smile. She’s curious. She likes to learn. She’s still chatty.

I’ve been pretty open sharing our journey on this blog. But as I look back on the past month, there were definitely some dark times and thoughts I had that I’d rather not revisit. I’d be lying if I said there weren’t days I didn’t want to go on, days I wish I could turn back the clock, times I blamed myself, blamed God and cursed God. And when I didn’t think there was any other way I could feel, God’s presence would wash over me and I felt peace, patience, acceptance, love, thankfulness and happiness, I hope that one day I will be completely content in my circumstances. That’s very hard…I don’t know many people who are always content.

I’ve learned by now to be quite content whatever my circumstances. I’m just as happy with little as with much, with much as with little. I’ve found the recipe for being happy whether full or hungry, hands full or hands empty. Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am. – Philippians 4:10-11 (The Message)

The truth? I was always a little uncomfortable around people with special needs or disabilities. I don’t know why. I would always smile, but internally I thought: “Was that an awkward smile? Did I look them in the eyes too long? Am I’m staring? Should I say something? How do they feel? What’s it like to be on the receiving end of endless questionable stares and looks of “normal” people? Can they tell I’m uncomfortable? I hope not…I hope I’m not making them uncomfortable. What do they want?”

Do you know what they want? To feel accepted. That’s what I want for my daughter. I don’t want people to feel uncomfortable around her. When friends and family have come to bring us meals these past two weeks (thank you by the way…that has helped immensely) we invite them in, talk with them about her condition, about some of her involuntary movements. We let them know, she’s not just fidgety, that’s her moving involuntarily b/c of her movement disorder, which is a result of the brain damage she suffered. Get to know our daughter, become comfortable with her special needs…ask us questions (although sometimes we might get tired of answering them) we definitely want you to be interested.

These past two weeks have also started our insanely busy therapy sessions. So far we go six times a week across four days, at all different times. Honestly, an hour of physical, occupational and feeding therapy every week is not enough (did I mention we will also be doing speech therapy, just waiting on that evaluation).

I mentioned on our Fundly page that our insurance only covers thirty sessions. Florida’s Early Steps program may pick up the slack, but in my conversations with our coordinator, it was unclear what they would allow, what would be covered and who could provide those services. We currently go to therapy as an outpatient service, but we feel Reagan would not only benefit from that environment, but also therapy within our home. Early Steps didn’t make me comfortable that both of those would be an option, it seemed to be one or the other. I feel like I need to put my battle gear on and get ready to fight for what my daughter needs, and what I think is best. If someone else wants to tell me that Reagan only needs half the therapies, or less than what my motherly intuition knows she needs, we will fill in those gaps for Reagan. We will provide her with the best, her future outcome depends on us to do that. And that’s where our Fundly page comes in, we’ve also provided a sidebar on our new blog to donate.

There is no way for us to account for the unknown costs, but we do have known expenses in caring for Reagan which we have detailed. If you feel led to give, in any amount, please do so. Every dollar goes toward caring for Reagan and providing her the very best.

Ok, that’s enough donation talk.

Rob and I have started to create new routines and normalcy in our life. Those are hard to figure out and we have to be intentional about our parenting, even more so than before.

We have to feed Reagan at 10 pm every night due to her metabolic condition, for the first week and a half, we hooked up the feeding tube in Reagan’s bed while she was sleeping, which worked great before she was rolling over. Now she rolls over (hallelujah for Reagan rolling!) the only problem with that was her feeding tube would get a kink and thirty minutes later when Rob went in, she would be laying in wet clothes, wet sheets, and a bed soaked in formula. Changing the sheets, changing Reagan, getting the food started again and doing that whole process over again would take another hour, and we were beyond exhausted, so Rob came up with a better plan.

Now when we feed Reagan, we wake her up, I hold her and Rob reads the Psalms out loud. This is a much better plan, and our attitudes have improved. God’s word is active, powerful and sharper than any sword. We are speaking the most powerful words over our daughter and God can use our speaking over her with his words to heal her.

You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I’d even lived one day.
Psalm 139:15-16

God wove Reagan together. He knew that April 7th would be our last normal day and bedtime routine, and that on April 8 her body would fail her. He knew everything would change. But I know that God knows how to re-weave. He can take tattered yarn and mend it. A broken body and heal it. He can take someone who is doubting and angry into one who hopes in the one who can heal. I pray God can turn this mess into good, and I know he can.