Thursday, October 21, 2010

I'm mad, but God works in mysterious ways

Lily is sick again--the second time in five months--and I can't help but wonder if it's because we took her to Dave's old school and a few of the children there grabbed her hands before I could stop them. I usually am pretty quick to keep an eye out and suggest that they feel her feet instead of her hands, but too much was going on. It probably wouldn't be a problem, really, but Lily puts her hands in her mouth constantly, so germs are quick to spread.

Maybe I'm just needing something to blame. It's just really hard anymore when Lily gets congested because she has a hard time tolerating anything that we feed her through her tube. In the past two days, I've dealt with vomiting in her car seat, on the living room floor multiple times, and in her bed. It's never fun because I'm usually holding the syringe when it happens. First comes the cough or the sneeze, then the mess.

It's also heartbreaking to see our little girl who's usually so full of life to be so lethargic. She's slept off and on all day long. She did stay awake long enough to watch Barney (her favorite show) with Gabriel. Then, this evening, she ate a little by mouth and stayed awake while we went for a stroll. But as soon as her bath was over and she was dressed, she was out. Poor thing. I guess she's really trying to get over this cold.

But here's the kicker. Lily was denied the Synergist (spelling?) vaccine. This is the vaccine for RSV. I consider it a much-needed vaccine, especially for children with T-18, because I've been through RSV with Gabriel, and trust me, it's not fun. When I talked to the receptionist at the doctor's office yesterday when I was making Lily's appointment, she told me about how Lily was denied, but then she said, "Well, if she gets to a point where we have to put her on a breathing treatment, we can appeal the decision." I told her that Lily was having trouble breathing, so she said that we would just have to wait and see what the doctor found. Lo and behold, he heard wheezing and prescribed a breathing treatment for Lily. (May I add that Lily did not see her usual pediatrician at this appointment.)

When we went in for her recheck today, her usual pediatrician looked at her file and said, "God works in mysterious ways." I was a little perplexed because he sounded so happy while I'm sitting there with my sick little girl. He explained how the information about the denial had been sitting on his desk and he was wondering how we were going to handle it, and here's Lily with a diagnosis of wheezing. He felt that was enough to appeal the vaccine.

I've seen time and time again with Lily that God does work in mysterious ways. I've also seen that most of those times, I begin mad because something didn't go the easy way, but I reach a point, humbled, because I wasn't patient enough to see it through, to see that God's mystery has been there all along. I can be so blind sometimes.

Now, Lily might still be denied, but at least if she is,this episode is the beginning of what Lily needs to convince whoever needs to be convinced that Lily can definitely benefit from this vaccine.


  1. Poor Lily! I can't believe that they can deny Vaccines! I was just reading about RSV today. I hope that everything works out and that she is well soon! Give her a kiss for me. xo Shannon

  2. So sorry about Lily.I read her blog everyday because I am Annabel Leigh's meemaw.I also follow Annabel Grace and the new little Lily. Annabel just last week got her RSV vaccine. That infuriates me that Lily was denied.We all know how fragile our babies are with T18 and the respiratory issues.I pray for Lily often and I will be praying that she gets that vaccine.Yes it is wonderful when we can see God actually intervening in the affairs of man.God is going to see to Lily's needs.
    Cynthia Polvadore

  3. I can't believe Lily was denied a vaccine! The ones who need it most are denied it? I can just imagine how mad you were.

  4. Praise God for His ways that are higher than ours, for His thoughts that are not ours; praise Him for His mysterious and wonderful ways! You told this story so beautifully and in such a God-honoring way...I feel sure it will inspire and edify others. Sometimes when we're "mad," discouraged, whatever...God seems to do His best work : ) He's awesome; so are you. Keeping Lily and all of you in my prayers!

  5. Jill,

    Brianna's health care denied the shots but the pediatrician then put them through (coded them) as "preventative care". I still had to fight and fight and fight with the insurance company, but we got it through.

  6. Many people would think a special needs child as a burden, but for me I see them as little gifts. When the "flesh" is weak, the "spirit" is strong, and vice versa. I truly believe that the higher influx of "special needs" children is The Creator's way of telling the world to pay attention to what we are severely lacking on this, understanding, compassion, common curtisy, the willingness to allow someone to or loose, and..time to stop and take life in and not take anything for granted. I applaud you for your decision to have Lily! It is not what ~you~ can do for ~her~, but what ~she~ can do/teach you, and everyone she comes in contact with. Sometimes we entertain Angels unaware. ;)
    Hang in there!
    Love ya,
    Cousin Amy