So here we were on this crazy ten ticket ride, and I knew very early on, that we would have to find an organized way to survive this ride or else we would get lost in everything. I decided that it would be a very smart idea to get a day planner for Simon. With all of his specialists we needed a central place to keep phone numbers and other important information.
If you know anyone who has recently had a baby with a disability of any sort, here are my suggestions for them:
1.Get a day planner or central notebook. Something with lots of places to make notes when the doctors are speaking medically. Have enough space in there for pens and a calculator. (You never know when a calculator will come in handy.) Have a different color pen for keeping track of developmental milestones. It is nice to look back at the day planner and be able to realize that even though it took a little longer, my baby did eventually roll over. This was how old he was when he did it.
2. Set up or have someone set up a food brigade. With all the new words that you are going to have to learn, all of the appointment that you are going to have to keep, you do not want to be worrying about what will be for supper in a few days.
3. Have a central information person. If your baby is still in the hospital and you are running back and forth, you probably won't have time to be returning phone calls from Great Aunt Dorothy who wants to know how the baby is doing. With social networking it is easier to have only one place to update people, but it is always nice to speak voice to voice.
4. Be prepared for the stories. We had so many people who told us stories about their second cousin twice removed who had a baby with Down Syndrome and had to have a hernia operation, or a lung removed, or whatever. People will spend a lot of time trying to process for themselves how to deal with your new bundle. Sometimes you just have to smile and nod. If you are a friend of someone who has the new baby, try not to tell stories about your cousin who had the baby. After a while it gets to be a bit much. Save it for next year when it matters more.
5. Do your research. Get a hold of reliable material that can help you interpret what doctors are saying and what challenges need immediate attention and which ones can be addressed in the months or years ahead.
6. Find a friend. There are connections to be made at the hospital where you can speak with someone who has been through something similar. Find someone who has been there and can answer your questions, or just listen. It is invaluable to have a person you can call to find out about the challenges that lie ahead. If you can, go through a friend that you know personally. Then they can vouch for their personality and character and the probability that it will match with yours.
7. Take time to cry. It does really stink at times to have this hand dealt to you. Holding in the disappointment only delays the process you will have to go through eventually. You expected to have a perfectly healthy baby and when you don't it is okay to grieve. Just don't let yourself drown in sadness. You also have a baby! For some people that is not a reality that they can achieve.
I don't have much time today, so until next time,
here we come ten ticket ride. Going up!
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