Summer/Fall 2003
We finally got the phone call that we were going to receive respite care for Mason. I don’t remember when we put our names on the wait list, but where many have waited 2 – 3 years, we got on in less than a year and a half. We would receive half time – 14 respite days per year. One day is a 24 hour period when it’s a sleep over, or 10 hours here and there if we don’t take it as a sleep over. We can mix and match this, choose the days that work the best, etc. After lots of paper work and processing, in fall we were told that we would receive the full 28 days! There were people not using all of their respite time!
So we began in November. I asked the person who had been his main caregiver in daycare if she and her husband would be willing to take Mason. Yes, they would!! Now, you have to know some thing about them, Christians, young married couple, lots of energy, and both just adore Mason. The perfect couple in our eyes! Mason’s first overnighter confirmed that for us. A couple of hours after leaving us, they phone us to say that Mason had had 7 seizures in 20 minutes!! We happened to bump into the respite manager at the mall moments before the call came in. Coincidence? I don’t think so. Anyway, after calling Childrens Hospital and talking to a neurologist who didn’t know Mason and couldn’t offer any real solutions, we waited it out. In case of emergency like this we are supposed to use valium to stop the seizures quickly. We wouldn’t do this unless it would be life and death, because valium causes Mason to get severely hyper, can’t touch him, etc. It’s quite bad.
So, Mason had a couple more, but it tapered off and he was ok. We had just started him on a new medication a couple of weeks before, which, when he reached a certain dose, made the seizures worse as we found out.
Through this all, we offered to pick Mason up, but they said they were ok and were handling it well. They seemed confident that they could do it. I said they could call any time of the night if they were uncomfortable with this, but we never did get the call. In the morning they called (or did I?) and the night had gone well with no more seizures. We all pulled through it. So they got about the worst test possible on the first overnighter, and passed with flying colors. Isn’t that great?
It’s during these times that we get a tiny taste of ‘normal’ life. I find myself so relaxed for that twenty-four hour period, and we can leave the interior doors unlocked!
March 2004
March 29 finger print: Mason turned 5 today and I have been having a tough time with it in the last few days. Although he has been showing progress in tiny ways that are exciting, he will never be like other children, and there’s nothing like a birthday to emphasize that. So in the midst of discouragement, God has given me a fabulous birthday gift for Mason that I would like to share with you! For the very first time in his life, Mason peed on the toilet today at preschool! It quite surprised him and it’ll be a while before he’s trained, but it’s a big first step! Anyway, thanks for taking a moment to rejoice with me!!
May 2004
Great news: Daryl’s benefits just approved the full cost of a special needs stroller $2500 for Mason (with all the bells and whistles –except the cup holder – could not persuade that one) ! I am getting a feel for Psalm 23 - about the valley (ours is getting deeper right now with seizures increasing) and the gourmet table God is preparing for us. Surrounded in darkness we can see the sparkle of the most exquisite silverware and crystal glasses on that table he has prepared for us. The stroller approval could not have come at a better time! He is taking such good care of us!!
