Savannah was born November 1, 2001. I was 20 years old. I had no clue what I was doing. She was 4 pounds 10 ounces. She went straight to the NICU and remained there for 3 weeks. Over the next 3 years, she had 5 surgeries, was fed only through a tube in her nose and then in her stomach, had physical, occupational, and speech therapy each week, and many doctor appts per month.
About 4 years ago, she was diagnosed with Prader Willi Syndrome. This means that she is always hungry. You know when you are hungry and you want to eat food? Well this is how Savannah feels all the time, even after she has eaten. This causes her to have impulsive behavior. That means, that she is always on her "A" game. Always looking to do something and always trying to figure out how to get food. She doesn't have any control over her impulsiveness and sometimes it gets her into trouble. Her main focus is to get food and then eat it as fast as she can. And she also has no control over that desire.
Savannah is in the moderately delayed class at school. This means that she is in special ed with other kids like her and even some that are lower functioning. But don't let that fool you. Savannah is smart. Smarter than me sometimes. But she only has to fool me once before I am on to her.
She was diagnosed about 6 months ago with Hypomelanosis of Ito. That comes with developmental delay, her one leg smaller than the other, and some other issues. Her legs are different sizes as you know from the large shoe lift that she wears. It is about 9 centimeters or 3 inches different. She has worn braces her whole life and initially had a walker to help her walk. She is now running independently and riding a bike. Two things I thought she would never do 9 years ago.
Savannah is the sweetest little doll that you will ever meet and is about as friendly too. She has to say hi to everyone. In fact, I can hardly take her to the grocery store without her knowing who has a dog, a wife, kids, a house, and she asks their name and what they are buying at the grocery store. Sometimes she even asks what they are having for dinner and gives me great ideas :).
Many things in Savannah's life are hard. She can't do everything that "normal" kids can, physically, emotionally, spiritually. It is hard to work with her sometimes, but the only way to help her and to understand her is to get to know her. To love her. And show her that you love her. It is also to help keep her safe. She doesn't know boundaries. She doesn't know stranger danger.
It is important for Savannah to do hard things. It is hard for her to be good at school sometimes, or on the bus, or at church activities. But she tries really hard. It is important that Savannah has social interactions with her peers, kids that she goes to school with and kids that she goes to church with.
Things that might be helpful:
1. Prevention is key: you always need to be 3 steps ahead of her. She is ALWAYS on her "A" game, so you can't let her catch you off guard.
2. Talk to her: explain what you are doing and why. Sometimes people forget to talk to her. She is smart. She gets it. Just talk to her.
3. Be firm, but not stern: You must love Savannah. If she senses animosity or frustration she will feed on that and take advantage of the situation. But if you love her and she knows you love her, you will have a lifetime friend.
4. She loves having a job. Give her a responsibility and she will run with it.
5. Put a time limit on things. If you have an actual timer, even better.
6. Be willing to tell her no. Be firm but not stern.
7. She is very impulsive (and fast). As you get to know her better you will learn the tell-tale signs that things are deteriorating; unfortunately it’s not really any one thing I can describe. She usually just needs redirection of
8. Love her. If she knows you love her she’ll love you right back and be much more willing to cooperate.
Things I love about Savannah:
1. She is SO friendly
2. She is the biggest helper with babies and around the house
3. Savannah's smile: it lights up the room
4. She challenges me: she pushes me and helps me grow. Sometimes it is so frustrating to be her mom, but it is also very rewarding.
5. Her spunk. She has a love for life like I have never seen in any other person.
6. Her ability to love everyone.
7. Hugs and kisses.
8. The super funny things she says. Never a dull moment with Savannah.
9. She has no fear. I suppose this could get her in trouble occasionally but I think it actually serves her well most of the time.
Gave me some perspective. Also talking to a friend the other day left me with a broader perspective. I was asking her if we could swap our buckets of trials with another. She began to list several trials I am actually glad that I don't have just as many of you are glad you don't have mine. But the important thing to remember here is that our trials are ours. And no one else's. Each of our trials help us to become more like Christ. And that is the goal of our time on earth.
