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.

Monday, July 11, 2011

The Beginning of Swimming

When you have a baby, you celebrate every milestone. It is a thrill to see your kid learn to do something. I often cheer loudly and clap for small and even silly things for all our kids, such as cleaning up the living room or eating every piece of broccoli. Sometimes it's just to make them smile, or to distract them from a possible tantrum. They think I'm goofy and it works for us. This past week Jasen and I were thrilled to clap and yell for Lilli at the neighborhood pool. Lilli has learned to float in a swim ring, but this week she started to slowly kick her legs to purposely move herself through the water. Keep in mind she is seven, and up until this week, her legs dangled motionless in the pool. Just like when we taught Lilli to crawl by moving her arms and legs for her at 15 months old, we had been moving her legs in the water and saying, "Kick!" I do not know how long we had been doing this. Things stretch on with Lilli for months, years. But the light bulb finally went on this week, and she can get herself over to the wall by kicking her legs.

This is a really big deal to us. Is she swimming? No. But I can't describe how huge it is for me to see her kick her legs and propel herself over to the wall with smiles and determination. It is the beginning of something new. It is a different kind of milestone. It is a milestone I did not even know was a possibility. Last summer, we were holding Lilli in the pool and teaching her to use the swim ring. A few years back before that, she was crying in her life jacket in a therapy pool in Virginia. How did I know she would get to this point? I didn't.

This made me realize the difference between how I celebrate each of my kids and their accomplishments. Four year old Chloe has learned to swim with a life jacket, and she is all over the pool now. We clapped and cheered for Chloe. I am super proud of her. Right now we are working on bike riding and losing the training wheels. But it's different with Chloe and Josh. I just, well, I expect them to learn these things. I assume that even if it takes them a long time, they WILL learn how. That's just all a part of growing up for them.

But with Lilli I think, she MIGHT learn how. Maybe. If we work on it for a really, really long time, she just might learn how.

I guess it is partly that I don't want to set myself up for disappointment, and partly that I don't want to put pressure on Lilli to learn something she is just not capable of doing. But how do I know where to set that limit? I don't. No one does. When the doctors told us she would never walk as she lay there in the NICU, just a few days old with brain damage, how did they know? If we had listened to them, we would never have tried so hard to teach her how to walk. When Lilli was two years old and crawling everywhere, I could not see into the future and know that all of our efforts would pay off just one year later. She took her first wobbly steps across the room at age three. When Lilli had a bad seizure and could not eat solid food, I had no idea that I would be pureeing her food for 3 long years in a Magic Bullet. But now she is eating chicken and green beans like the rest of us. She is even swiping chicken nuggets from Josh's high chair tray. When Lilli learns to do something new, it is a completely different kind of celebration. It is a gift. It is a miracle. And it is a reminder to everyone that we should never set limits on what our kids can do. Or more accurately, on what God can do.

I have had many experiences with people looking at me as if I am just this sorry, in-denial mother who does not realize her poor kid has brain damage. I noticed it recently when I made a comment about Lilli and someone bit their tongue and looked away with a kind of "that woman is on another planet" expression. I have seen that expression dozens of times. Even from Lilli's own teachers and therapists. I don't care. I would rather live for the possibility of miracles than settle for realistic limitations. Ask me if I think Lilli will talk someday. What do you think I will say?