A Weekend of Learning - Deafblind Children

I'm really proud of Leslie, not just because she's a great, dedicated mom, but because she's willing to do anything for Olivia. She spent the entire weekend at a seminar sponsored by two Texas agencies that advocate for children that are deafblind.

Let me digress here, what is deafblind? I searched for the best description I could find and wouldn't you know that Wikipedia had the one that made the most sense. Here it is.

"Deafblindness is the condition of little or no useful sight and little or no useful hearing.[1][2] Educationally, individuals are considered to be deafblind when the combination of their hearing and vision loss causes such severe communication and other developmental and educational needs that they require significant and unique adaptations in their educational programs.[3] Deafblind people have an experience quite distinct from people who are only deaf or only blind."

It's hard to comprehend what that really means, but can you imagine be deaf AND blind? Leslie experienced a little of that world this weekend when she was blindfolded and then things were shoved in her hand and mouth with little or no warning...AWFUL. She learned a lot and gave me a lot to think about too. It was a long weekend but she came away with a lot of good information and taught me a lot about how Olivia interacts with the world.

Try it -- have someone blindfold you and put in ear plugs...how hard is it to interact with your world?

According to all of the statistics I've seen, there are only about 10,000 - 15,000 deafblind people living in the US. Regardless of the actual number it's not very many. What I took away from the weekend was that it's going to be VERY hard to get Olivia any semblance of a good education in public schools without both Leslie and I fighting for every single thing. It's hard enough for the "average" (whatever that means) child to get a good education, can you imagine what that means for a deafblind child?

One thing I know for sure is that Olivia is a fighter and that her will (and our attitudes) are going to go a long way in helping her shape her future.

Chad

Giving Thanks - It's All Relative.

Today I took Olivia out on a few errands after watching her for most of the morning, and I was really tired and stressed. It was one of those days that it seemed like nothing was going right. I couldn't touch Olivia without her fussing at me. I couldn't put on her hearing aid without her fussing at me. I couldn't put her in her car seat without her fussing at me - you get the point.

I was pretty beat down and anxious. In all honesty, I was pretty mad at everyone, including God. Then, right when I needed it, God lunched me straight in the face. It was like he was screaming at me, "it's all relative Chad, it could be so much worse." A friend of mine sent me a message about a family struggling with their baby's rare genetic condition that caused him to break out in blisters anytime we was touched or touched himself. From what I read, it looked like he didn't have a whole lot longer to live - at 2 years old.

Punched right in the face, hard. Really, hard. I am a baby. I was being a baby.

After I wiped the tears from my eyes hearing this family's story and thinking about the days after Olivia was born and we didn't know if she'd live, I prayed and thanked God for everything he gave us. Olivia is such a miracle and so strong. It reminded me of Hebrews 12:1 (12:2-3).

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."

I thank God every day for the miracles He gives us to help little one's like Olivia bring so much joy to our family. It's all relative, sometimes I need to remember that.