Friday, July 15, 2011

Leaving Lilli

If you know a parent of a child with special needs, especially new parents with a baby with special needs, do whatever you can to GET THOSE PARENTS OUT OF THE HOUSE on a date! I am sincerely appealing to all readers who do not have a child with special needs of their own, but know someone who does. If you have ever had the thought, "Wow, they have it tough, wish I could do something for them." This blog is for you.

Going back in time to when Lilli was a baby, people always asked what they could do to help us. We would ask for prayer, but that was about it. Pride is a powerful thing, and so is chronically sleep-deprived paranoia. Here would have been my list of needs if I had the guts/maturity/honesty/clarity to verbalize it back then:

  1. Prayer (always the most important, it really is better than anything)
  2. Money to pay bills – as in, mega hospital bills, endless co-pays to specialists, extra "special needs" costs on top of the cost to have a baby
  3. Someone to bring random dinners over for us
  4. Gift cards, because they are designated for places. Giving a person cash and saying "Use it to do something for yourself" means they will use it to pay medical bills.
  5. Someone to watch my child for free so we could go on a date.
  6. Oh, and a gift card to the restaurant FOR the date. I'm serious.

I must say that God indeed blessed us with friends and family who did all of these things for us. Even strangers, who sent us cards telling us they were praying for us and cash to use for "whatever we needed." I still have those cards. When I look back on those first few years, I can't believe we even made it through. Now that we have two other children who do NOT have special needs, I can tell you from experience that having them was cake compared to Lilli. A joy. Unbelievable surprise at how much easier it was, to have a "typical" baby.

All of Lilli's life, Jasen and I struggled with how hard it was to leave her, even just for a few hours to go on a date. How can I explain? She had seizures, choked on everything she ate and drank for years, needed medicine, slept in our bed because of her seizures. She has gone through terrible phases. Tripping and falling every few minutes. Eating rocks and mulch. Licking and biting everything, and I mean everything in sight. We still feed her. I won't even go into potty details. And she has absolutely no sense of danger.

So how do you hire a babysitter in this situation? We had to depend on family and friends who offered.

When we moved here to South Carolina 2 years ago, we started going to NewSpring church in Greenville, because they offer childcare for kids with special needs. Yes. That was the reason we went. Another blog someday will be about our experience with church with a kid with special needs.

One of the volunteers in the special needs class came up to Jasen one day and said that God had put it on her heart to offer to watch Lilli - and our other kids – so we could go out on a date. Jasen kept it a surprise from me. She showed up with her husband and a friend, and the three of them watched the kids for just a couple hours on a Saturday afternoon so we could go out to lunch. That meant the world to us.

This past spring, our lives were completely changed in several ways. One, we finally got a pulse oximeter to hook Lilli up to when she sleeps so we can monitor her for seizures. (Up til now we have had to watch her 24/7, and she sleeps with us.) Two, we qualified for home health nursing care for Lilli, 15 hours a week. Think of all the families who have kids like Lilli who do not have this help. As a result of these hours of having a professional nurse care for Lilli in our home, I can go grocery shopping, run errands, drive Chloe to school without having to take Lilli with me, and my husband and I can go on a DATE. We can actually go out and not worry about her, because if she had a seizure the nurse would know exactly what to do. Of course, we still have to hire a babysitter to watch the other two kids. AND we have to pay them. So when we go out, we have two babysitters at the house. But that's amazingly awesome for us. I do not know what the "statistics say" specifically about marriages that fail because of the strain of having a child with special needs. I have heard 75%, even 80%. Honestly, I don't want to know. It's depressing. But I can tell you from personal experience that I can understand why. It is the reason I am writing about this. So, think of a couple who has a baby with special needs, and help them get out of the house for a date. You won't believe how much you are helping their marriage.

1 comment:

  1. Jennie, this is GREAT! I know how hard it is to get out of the house with 2 kids who are NOT special needs. I can only imagine how many kajillion times harder it is for you two.

    There is a reason God gave Lilli to you and not another mommy. Because she knows you have all the love and patience she needs. Keep up the good work!