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.

3 Replies to “One month”

  1. Your struggles bring tears to my eyes. But, I know God is your strength and courage. So, I cry, laugh and enjoy my life with all that you are going through. Reagan brings so much joy into my life and blesses me with all that she is. You and Rob bless me too. God blesses us everyday and I see His miracles in the life of your family. Always keep praises and asking God to be the center of your life for His deeds are marvelo
    us–more than we could ever hope for or imagine.

  2. Wanted to share two resources that I have worked with who might be helpful for you guys as you navigate this new role in advocating for your precious girl. The first is called Nathaniel’s Hope https://www.facebook.com/NathanielsHope
    They are an organization that can help you find out what resources are available to you in the Orlando area and hook you up with parents who have had to go to bat in order to get the services their children need.
    The second is called Feeding Matters https://www.feedingmatters.org/
    They are a parent formed organization that helps put together resources for families of children who have feeding challenges. It’s a great website and they have a support system that you can join as well.
    Hope those are helpful to you. My heart breaks for your family and I think about you and your precious girl often.

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