Not Knowing …

Chloe, my 11-year-old daughter does not have a diagnosis. Since her birth, she’s been tested for everything under the sun. But all tests come back “Normal.” But my Chloe is not normal.

She has a normal MRI of the brain and spine. Her chromosomes all come back as normal also. Her blood work usually comes back normal and shows nothing. She has the doctors baffled, really.

For years her neurologist and her geneticist passed her back and forth, unwilling to “own” her. The neurologist would swear it must be genetic. The geneticist would declare it must be neurological. Finally they agreed that what she has is genetic — a syndrome of some sort — but they don’t have a clue what.

It used to really bother me that she didn’t have a diagnosis. I would spend hours and hours and hours researching on the internet, trying to find the answer. Somehow, putting a label on my child would give me peace or finality, I guess.

But the Lord ended up giving me a peace about it, and I was set free from having to figure out the mystery of Chloe’s diagnosis. At times it would be great to know the diagnosis so I could more closely relate to folks in the disability community who can list off their child’s labels. Other times, it would surely help as we make decisions for treatment. Some rare times, the thought of life-expectancy comes into my mind … does Chloe’s syndrome include a shortened lifespan?

But really for the most part, her lack of diagnosis doesn’t bother me. She’s Chloe. She’s perfect. And she’s mine.

But lately (as has sometimes happened in the past) a fear of the unknown has crept back up into my mind. I think I’ve mentioned here that Chloe’s ability to walk has greatly diminished in the last year. It has gotten so bad that she crawls around the house now since walking is so difficult. With the regression of her walking has also come the regression of her feeding. She prefers to only drink her Pediasure milk every meal. I’ve been successful most days to get her to eat something, whether it’s pudding, baby cereal, or a squeeze fruit packet. But if it were up to her every time, she’d just drink milk.

Doctors aren’t sure why she’s lost so much of her skill for walking. No one is sure why she has regressed in her eating. Their best guess for walking is that she’s grown so much that her muscles haven’t been able to catch up. If that’s the case, then there is hope for her regaining that skill. However, the doctors also mention apologetically that the truth is we don’t know what we’re dealing with. They always wonder if perhaps this is the next step in the progression of her unknown syndrome. While she’s never given us or doctors any reason to think her syndrome is progressive, the truth is we just don’t know. So when we go through times like we’re in right now, there is some fear.

While I have complete peace in who Chloe is and that God’s purposes for her are and will be fulfilled, I also have to admit that I just don’t know. I don’t know what the future holds for her. But you know what? I don’t know what the future holds for Elliot or Zippy either. In fact, none of us are promised tomorrow, are we?

I am a big believer in not owning anything until you’re sure it’s yours. You know what I mean? You find a lump in your breast and you’re sure it’s cancer and you’re filled with all kinds of fear …. No. That’s not how I do things. I don’t get worried about cancer until I know it’s mine. And I don’t worry about Chloe’s syndrome progression until I know it’s hers to deal with.

I know that her regression in walking is frustrating and limiting for her. Therefore, I have her in physical therapy 2 times a week. I know that if she regresses much more on her eating, she will lose the ability to eat orally, and I don’t want that to happen so we are doing tests and encouraging her to eat foods. I know we have to own those things so I’m dealing with them as they come.

I tell you all of this not to worry you (remember: don’t own it until you know it’s yours to own!) but so that you can pray for Chloe. And so that you can know what’s in our minds and hearts. I try to be fair and share the goods and the bads here on my blog. So here is some fear and some unknowns and some vulnerability.

It’s all in the unknowing…

And for the rest of the unknown … I give it to God. It’s His anyway, isn’t it? He loves Chloe way more than I do so His hands are good ones to place her in everyday. I truly believe that.

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10 responses to this post.

  1. Posted by Sandra Heaslet on September 1, 2013 at 1:22 PM

    I had no idea you all were going through this. I will definitely keep praying. I hope it’s a temporary setback, and when her strength returns. So will her appetite. Thanks for sharing, friend. Sending hugs to all of you.

    Reply

  2. Posted by Joy Burrow on September 1, 2013 at 1:32 PM

    Kelly, know that our family is praying – for sweet Chloe and the rest of your precious family.

    Reply

  3. Posted by Tammie on September 1, 2013 at 3:33 PM

    So glad you shared Kelly! We will be praying for Chloe, your family, and wisdom for the doctors. She is an amazing kid! Lamentation 3:22-23 has been on my mind consistently for the last month. It says, “The steadfast love of the Lord never ceases;   his mercies never come to an end; they are new every morning;  great is your faithfulness.”. Praying you feel His mercies every morning.

    Reply

  4. Posted by Annette on September 1, 2013 at 7:50 PM

    You and your family are in my prayers! Thank you for allowing a stranger like me into your life. I have been following your blog for quite a while. I identify myself and my family almost every time! I am a mom of 4 and a half. (One adoption in process) We have one child typically developing and the rest have Down syndrome. One of which is severely autistic. Our toddler Max currently has 2 genetic diagnosis and they think a third but can not figure out what it is. He is 3 and a half weighing 22 lbs.We have been through the wringer of specialists over the last few years. Feeding, nutrition, oncology, hem, GI, genetics, …. I have lost count. A few months ago they all released him, they don’t know. He just grows slow, eats lots and looks like an elf. I am so relieved to be done with the the stress of possible g-tube “threat” but still so many questions unanswered about his future. My realization… He is God’s child first! His actual name is Malachi which means angel of God. As much as I love him, God loves him more than I can imagine. I take comfort when putting Max in God’s hands every time I get nervous for another weight and growth check. I pray for the courage to do this. It doesn’t come easy. Thank you for allowing me to share my life a bit with you

    Reply

    • Hi, Annette. Thanks for sharing. Your family sounds awesome! Wow. What a blessing and gift. But what a handful, right??! I love Malachi’s name — it’s powerful! And it’s wonderful that you, like me, have learned to give him back to God over and over and over again! Crazy that the specialists just released him since they couldn’t find answers…I’ve been glad that Chloe’s docs still want to see her at least annually to follow her progress and in case anything new is discovered about genetic testing or whatever. I’m so glad that you are here and that you let this stranger into your life! 😉 Please comment again so I can know how yáll are doing!

      Reply

  5. Posted by Liesl on September 1, 2013 at 9:54 PM

    Thank you For Sharing A Part Of Yourself Kelly.YOu Are Always Amazing To me, As Is Chloe. Love, Hugs, And Prayers Your Way. Sorry About The Odd Caps. MyPhone Is Weird.

    Reply

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