Thursday, May 21, 2009

April showers bring May flowers

It was 2 years ago this week that we prayed for God to heal our sweet baby's eyes. Weeks before I was told she was blind in her right eye, God had whispered into my ear, "I will heal her eyes." I've heard God several times in my life, in that kind of communication that is somewhere between audible and internal. People who don't believe think you're schizophrenic, but those who do, can tell the difference.

And so we gathered all together on my 26th birthday, with no one knowing what day it was, to pray and lay hands on our sweet girl. She put on quite the dramatic show with knocking the feeding tube out of my hands, spraying milk all over the room. Everything about Ella had stressed me out to that point. No one knew what we were going through and how bad it hurt. Until they came and sat on our milk-stained couch.

We prayed. We prayed and prayed. We talked and cried. I was so thankful for all the love that was gathered in our too-small living room to pray for a baby that most of them had never held, had never touched, had not yet known. We prayed until there was nothing else to pray. And with grateful and yearning hearts, we left it up to God.

If you want to know what He did, you should read this. (There may be a good ending!)We had no idea what we were in store for when we brought her home from the NICU. They stocked us with feeding tubes, extra leads, syringes, like that would be what we needed. What our care package should have included was wine, espresso and unlimited counseling sessions.

Nothing can prepare you for having a baby. Nothing on your registry. Nothing in a book. And then to have a special needs baby- oh how I hate that term!! The State of Indiana is LUCKY that they changed their "Crippled Children's Insurance" to "Special Health Needs" something or other. They were about to have an exhausted-over-caffeinated-hyper-emotional freak on their hands. It could have got very ugly, very fast.
This picture was taken the day Ella got her first pair of glasses. She was 4 months old. Before this day, she never held her head up and looked around the room. Some kids with vision problems don't look around because their blurry vision makes for a very scary world. This day, she sat up straight, and enjoyed her world, squishy book and all.
You may not see from my face how painful our life was, but that's just because I've become a great hider, not one of my proudest accomplishments. If you allow your emotions and all the chaos running around in your head to be seen, it's hard to function and no one wants to hang out with you.

We didn't even know what a cleft palate was, nor Pierre Robin Sequence. No disrespect to Mr. Robin (pronounced row-ban), but I have little admiration for a doctor that names a serious disorder after himself. What an ass.

I didn't know CPR or how loud an apnea monitor could sound. I didn't know how to change a feeding tube, in public, with no supplies. I didn't know the difference between a CC and a mL. To be honest, I never wanted to know. Some days I still wish I didn't. But, deep in my heart, way past all the present-day stress from this situation and way past all the old trauma that lingers, I know that someday this will all be worth it. That this story will mean something to someone. That I'll change a G-tube in public for a mom who doesn't know how. That I'll find a family with no health insurance to bless with the thousands of dollars worth of unused medical supplies we have. That I'll hold someones hand, maybe dragging them a bit, pulling them out of the muck of their childs own health problems. Someday, I will thank God for this experience and it will be worth it.
It's not like we haven't already been blessed. We watched a miracle take place with the healing of Ella's eyes-most people never get to experience anything like that. We were shown an overwhelming amount of love through time, food, cards, hugs. God put people in our life that we never imagined would be the people who stepped up and loved us. We have become a resource for others who don't know where to go, what to do. God has provided for all of our needs.

As for me personally, I've found great friends in the 4 therapists that grace my life every week. They don't judge me for wearing sweatpants at 2pm, for having dishes in the sink, for breaking down, for needing a hug. I've had my faith tested, stretched, stepped on, renewed - only to stand up straighter at the end. I have seen the strength that I didn't know I had. I have experienced the power of prayer. I have taken a messy house to a whole new level. I have learned to drink black coffee!Some things just take time. The picture on the left is Ella when she was around 6 months old. The picture on the right is Ella at 2 years old. After you get over the shock of her hair color change, notice how her chin has grown dramatically; they said it would. Like most things that are significant and lasting, it took time. Lately, I have been catching myself as I talk about Ella in front of Ella. Weight gains, weight losses, g-tubes, speech delays, torticollis, therapy, allergies, sinus infections, blah, blah, blah. I notice how when I talk about these things, she stops and listens. It scared me the first time I told the girl in the nursery at church that she had a g-tube and Ella pulled up her shirt and showed her. She's listening. They are all listening. The power is in our hands to speak goodness and peace in to our children's lives.

I never got in to all those "parent help" websites. Yes, they contain valuable information, yes, there may be people who have been through what I am going through, yes, I know. But, what bugs me is that those parents are defining their children by their diagnoses, their meds, their problems. Over time, they also start defining themselves by their childs problems. "Lori, Mom of Jack (Downs Syndrome, GERD, speech delays, motor planning issues, Lactose intolerant, circumcised, hyperactive. On Reglan, Prevacid, Claritin. Has G-tube, inhaler, etc)" I made Lori up, but if you have been on any of those sites, you know what I'm talking about. If we define Jack that way for long enough, he will believe that is all that he is. If he ever gets better, Lori won't know who she is.

Some days I see an end in sight- a finishing point for all the madness. Some days, I can't see till dinner. Maybe I won't make it. Maybe I'll die of a coffee overdose before naptime. Maybe I'll never see how it all turns out. Or maybe I'll live till tomorrow and with coffee in hand, I'll watch her run and play and see her as she really is, Ella (sassy, snuggly, always laughing, gourmet food loving, pink nail polish-wearing, pro-bare foot, loved beyond measure, healed, hilarious, grateful, lover of life).


Anonymous said...

Hey Angie! Your story is amazing, moving, and transparent! Thank you for sharing! ~Jamie Rose Smith

moderndomesticmamas said...

Amazing. One of your best writings. This one says, "write me in a book."

Anonymous said...

Angie I'm so proud of you!!! God picked ypu because He knew you were strong enough to handle it, you're doing a great job stay strong!!! Stephanie