Sometimes It Is Hard

We had an appointment with Dr. Kutschera at the University Hospital again this morning. It was more of an information session for me and Bookie where we could ask all kinds of medically related questions about DS. So, to prepare ourselves we opened the big blue box of DS information that we received the day after we got the results back. In there was a movie about DS, some booklets and some magazines for us to read. We had purposely left it alone for a day when we felt we were strong enough to go through all the information. I thought that was yesterday…

The book we got from Josefin was an amazing book that was written in a positive way. I read it all without feeling sad or worried. To do an internet search and to type in Down Syndrome is still hard, even though I have done it a few times. (Thanks to everyone that has sent links to us with good articles/information. That has been great!) Facts are hard. No one put sugar in there for the reader. Maybe that is better not to make it sweeter than it is, but when the information is just pure facts, it is tough to read and realize this is about our child, this is in the middle of our lives now… Everyday we get stronger and stronger and learn more about this genetic abnormality our child has, and every day we fall more and more in love with him. He certainly has his own personality and he makes us laugh so many times every day. He is the most amazing person (to us) that we ever met. Yet I cannot help worry about what the future will bring, how severe his form of DS is, will he understand Swedish? English? German? and what if this and what if that? But then I look at him and I see his beautiful face that makes my heart melt again, and I know everything is going to be OK, we just have to climb a few hills on our journey.

So the big blue box… The information was good, but we did not get very far. The stories were beautiful about other parents in the same situation as us, with the same thoughts as us, and of course, again with that same extra 21st chromosome. I am so thankful that I have my Bookie here; I could not do this without him. Somehow, he always says the right thing and really makes me believe that it is going to be fine. And really, we do not need to read the info now. We have a lot of time on our hands. We were supposed to return the blue box next week to the clinic, but we exchanged it for a newer more updated package today. It is a white box.  We will see when we have what it takes to open this one.

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