What's it Like Raising a Special Needs Child?

Many of you have gotten to know Natalie over the years via CaringBridge; others have met Natalie in person and have seen what a beautiful little girl she is. These glimpses of her don't really tell the story of what it's like to raise her day-to-day.

I told Perry last night that I know Natalie has made me a better person, and maybe that's why she is the way she is. She's taught us all so much, and through her eyes I've seen glimpses of Heaven. If her story doesn't make you believe in miracles and the power of God, nothing will.

But the daily struggles can test our patience.

Natalie can't walk, crawl or talk. She can't see and often hangs her head. Going out in public, most people see her and say, "Oh, it looks like somebody fell asleep." No, she's blind, so she closes her eyes. It's a daily reminder of the fact that her sight is so low.

A "normal" three and a half year old would be running around playing or sitting down to watch a Disney movie. Natalie can't do these things, so it's our job to either hold her or keep her occupied at all times. Sometimes she'll sit by herself, but I try to do things with her at all times. This means things often just don't get done around here---and I've come to accept that.

Going out is another struggle, especially with a 9-month-old boy to bring along with us as well. If I'm by myself, I tend to just stay home and have others pick up the groceries or items we need at home.

Sometimes Natalie is happy as can be; other times she is irritable and we don't know what to do for her. We're constantly worried about seizure activity. Two times a day, everyday, we give her three different medications. A simple cold virus that causes sniffles and sneezes for Calvin sends Natalie to the hospital with RSV. A cold can last two to four weeks.

Bath time is growing more and more difficult as she gets older and longer. Feeding is problematic at best. She is slowly learning to take spoon feedings, but she still relies mainly on bottles.

Then there are the doctor trips. While many people use their vacation time to go on family vacations, Perry uses most of his time to go to Fargo or Minneapolis so Natalie can see her neurologist, physiatrist, etc. We've spent so much time in hospital or clinic waiting rooms. We've told Natalie's story so many times and gone through her history with nurses. We've learned how to become advocates for her in the doctor's office and insist upon the best care possible.

But what about the future? It seems we focus on the day-to-day so much that we often forget about what Natalie's life will be like 20 years from now. Who will be there for her when we can't be? How can we make sure she has the best care possible? When she gets too big for me to hold her and bathe her, what will we do?

I prefer to look at things in a different way. Calvin will grow up and one day leave our home; I won't ever have to say goodbye to Natalie. She'll be with me forever. Calvin will soon learn how to talk; Natalie snuggles and smiles and tells us she loves us in different ways. Calvin is learning how to walk and will soon run away from us; Natalie thinks the best place in the world is with her head on Daddy's chest.

With all of the struggles of everyday life with Natalie---I wouldn't give it up for ANTYHING. I'm so lucky to be her mommy. I tell you all of this because I wouldn't have known this without her. She teaches me patience that I never knew I could have. I love her with all of my heart. My cup runneth over. I've cried a river for her, but have learned how to stay strong when things are at their worst. I've prayed to God for everything from saving her life to helping her sleep through the night without seizures. Her life is precious.

I tell you all of this not to complain about how difficult our lives are. Often, I blog about the milestones and big accomplishments in Natalie's life, but that doesn't paint a complete pictures of what our days are like. I don't pity myself one bit---in fact, I only wish others could experience how incredible it is to raise a special needs child.

A voice says, "Cry out!"
I answer, "What shall I cry out?"
"All mankind is grass,
and all their glory like the flower of the field.
The grass withers, the flower wilts,
when the breath of the Lord blows upon it.
Though the grass withers and the flower wilts,
the world of our God stands forever."

Isaiah 40: 6-8