Monday, June 3, 2013

GIB UPDATE 6.3

Friday I met with Gabriel's pediatrician to discuss what we will be doing in the month of June.
That's kind of how things will go right now. We will be doing things by the day, by the week, or by the month.
June will be a therapy month: physical therapy, occupational therapy, and speech therapy.
June will also be the month where we have a genetic test done. The doctors have mentioned something called Autism Spectrum Disorder. I will be doing lots of research.

Our pediatrician wanted to know all about our trip to Spokane, as she had not yet received a recap/summary from the neurologist. I told her all about our trip, and while I talked she took notes and asked questions.

When I was finished talking, she typed for a minute on her laptop before stopping. She turned to face me on her wheely chair and asked me if she could tell me a story.

I shrugged in agreement and so she began.
She told me story about someone that wanted to go to Italy. They had planned and saved for months and every little detail of their trip was intricately laid out. They were so excited to go on this trip, it was what they had wanted their whole life. So they got on the plane to Italy, but then something happened and they ended up in Copenhagen. This person wasn't prepared for Copenhagen and didn't really know the first thing about Copenhagen or what to do there. They were disappointed, but then they started to realize that Copenhagen was actually a really wonderful place.

Now, while she was telling me this story, there was a little part of my brain going, "Whaaaa?" Until, when she finished, she said that this is what parents who have autistic children or children with developmental delay need to realize. That, as parents, you want a normal child and plan for a normal child, but when there are problems, you need to realize that there is still a beautiful and wonderful child who is unique and special.

I thought her story was nice and I told her thank you, but I made sure to voice fairly quickly that I already knew Gib is wonderful and amazing.
No matter what happens in the course of his life, he is the child I hoped and prayed for and autism or no autism, developmental delay or no developmental delay, he is everything I expected.
He is who he has always been meant to be.

I told her this.

She explained that most parents going through our current experience will encounter a mourning period. Mourning over the loss of a normal child, over the inability to match milestones with children their own age, or mourning over the inability to never reach those milestones.
I told her the only real sadness I currently felt was that my child was struggling.  I never want my children to struggle or to feel different and out of place in this world.
And that, really, is where my sadness lies.
I walked through Target over the weekend looking for a few birthday presents for my little Gib who will turn one in two weeks. I probably walked through the toy aisle 10 times and each time I passed through, stopping to look at the different toys, I felt myself struggling for composure as I wondered if he could even play with certain toys or if he would ever have interest in them.

My sweet Gabriel will always know love. I know we will work so extremely hard  and there will be progression and hopefully he will get better. We are determined to never let him feel out of place in this world. I expect him to know love and hard-work as he grows up and goes on to walk, talk, and do many great things.

This month I will also be doing research and looking into funding assistance for all of the services we are going to need. This is all really new and pretty overwhelming, but I'm going to do my best to get Gabriel the help he needs.

2 comments:

B said...

Thank you for sharing your very personal story. I keep praying for you all. God has a plan, sometimes it is hard to remember that but he does. I know it sounds cliche but I have you all in my prayers.
B

Anonymous said...

Sarah,
What a beautiful entry. You are a wonderful mama and your son is very lucky to be surrounded by such love. Our thoughts and prayers are with you,
Annie McCutcheon