I cannot even express to you how happy I was to find this energy/coffee drink in my fridge this morning! We ran out of coffee and I don't function well with no caffeine. I'm pretty sure Logan thinks his Mommy's crazy after watching her do a happy dance when she found this!
This was a pretty tough week for me. As always, the best way for me to handle stress is to write about it. So here we are. Logan will be switching therapy centers sometime in the next week to 2 weeks, since we moved out of the county we were residing in last year. Logan loves his therapists, but it's such a long drive now and his speech therapist will be on maternity leave soon, so it looks like all signs are pointing to switching centers. I brought it up to his physical therapist on Monday, and didn't realize how hard it will actually be to say goodbye! She supports whatever is best for Logan and best for our family, but she was downright bummed! I kept telling myself "I will not cry. I will not cry!" during our conversation of how much she has seen Logan grow and learn, and how much she has helped us, not only with Logan's therapy, but this whole transition to our new life. She was working with Logan back when we thought he was just needing a push, she was one of the first people I called when I found out Logan's diagnosis, and she has even been there as a friend when we were planning our move and stressed out to the max. I didn't realize how precious a good OT/PT is to a special needs family until we started thinking about switching! I know there will be fantastic therapists at Logan's new therapy center, but it's still hard to say goodbye to somebody who has been such a strong support to us.
Rewind a little bit, to when Logan was about a year old, and we started noticing one of his eyes would turn in and upwards randomly. It happened so rarely that at first only Mommy and Daddy saw it. Then Gramma and Grampa. Then his physical therapist. When other people finally started seeing it and we realized we weren't imagining it, we took him to his doctor. Luckily, the doctor was able to see it for just a split second, and wrote us a referral to an optometrist. We went to the appointment nervous about what could be causing it, and unfortunately the appointment was a disaster. The only available appointment was right in the middle of Logan's usual nap time, and he was NOT happy to be there instead of snoozing away in his crib. The doctor had very little patience for Logan, and after a very quick exam he stated Logan had perfect vision and the only thing that could be causing it would be neurological. Well, this was before we had been given Logan's diagnosis of Fragile X, and his words stung, HARD. Michael was not okay with how the appointment went, and informed the doctor of this. The doctor was very offended that we didn't say "ok" and tuck our tail between our legs as we left his office. We will NOT be pushed aside just because Logan wasn't acting like all his other "normal" patients. Logan might be whining, tired and chewing on his finger non-stop, but he still deserves a proper exam! The doctor asked us to come back in 6 weeks if the conditions hadn't improved. Well, of course they didn't improve because nothing was done to treat it! Logan was still crossing his eye, and it was becoming more and more frequent. We made one more appointment with the same optometrist and got the same result: it was either in our heads, or something was going on in Logan's head. Well gee. Thanks doc.
I mentioned this at our last appointment at the Fragile X clinic, and the doctor was less than enthused to hear how we were treated. She referred us to an opthamologist in Bellevue. We were able to get an appointment right away, and went this past Wednesday morning, bright and early. Other than a slight mishap of Mommy getting pulled over right in front of the hospital, we head inside with a positive attitude. They were GREAT! Like Tony the Tiger Grrrrrreat! Every nurse, doctor, and receptionist that we made contact with was so patient and knowledgeable. Logan was NOT happy to be having his eyes dilated, but the doctor was able to do her exam no problem. She advised me that Logan is far-sighted, so when he's trying to focus on something close up his eye turns in from him trying so hard to focus. She advised me Logan will need glasses, and hopefully since he's so young it can correct his vision so he may not need them forever. I don't know why, but I got SO upset when we left the hospital. I sat in the van, still in the parking garage, and had the hardest, biggest cry I think I've ever had. I just felt like everything that could go wrong with a child, is going wrong with my son. It sounds superficial to be upset about glasses, I know this, but I felt like it was one more thing added on to this tall pile of things, and that pile had already been swaying and tipping for awhile now. The pile finally fell over and I lost it. If anybody was in the car next to me in that parking garage, I'm pretty sure they moved their car to get as far away from the crazy lady in the minivan as possible.
I compose myself and make it home, and put Logan down for his nap. I talk about the day's events with several friends and family, and some assured me "It's not a big deal" and some felt the same as me, that it was all just too much for such a little guy. I started thinking about the other things that had already been on that pile. The fact that I've been very, very stressed about Logan's school situation. The fact that if one single child made fun of my Logan at school or made him feel self-conscious in anyway, I would want to snatch him up and move to another country, homeschooling him for the rest of his life. The fact that even after school age, I have to think about the possibility of him needing care after the age of 18. Thinking about what his birthdays will be like when he's a teenager. Will he want to have a skating party with all his friends, or will he still want a Spongebob cake with only family around so he won't feel uncomfortable? Will he ever have a driver's license? The future is so full of unknowns and "what ifs" that it seems all I can do to stay sane is push it all aside in my mind and move on. The only problem is that it's still there, and I know it.
No matter what the future holds, I will be there for Logan every step of the way, and so will Michael, that's one thing I know for sure. He will be loved and supported no matter what. I just wish I had a little bit more control on this journey that we're taking. I wish I could see into the future, and be able to prepare myself for what's coming next.
I will be focusing on giving Logan all the therapy we can, to prepare him as best we can for school. He absolutely loves to swing, so we're shopping around for a swing to hang on our back porch. We are also in the market for a mini trampoline, and an exercise ball. These are all things that Logan responds to positively, so I want to have them available for him 24/7. We will just concentrate on what we can do for Logan right now, today, and leave the future for tomorrow.
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why we call it 'The Present'."- Eleanor Roosevelt