March 16th 2019 Saturday.
I feel like I was broken up with today. You know how your heart aches. And you can’t quite see how you’re going to move on! There is no light at the end of the tunnel. That’s how I feel. Maybe I’m being a bit dramatic but not really! I even think James felt my heartache today.
Kyle had his quarterly appointment with Dr kundell this morning. He actually did the best, I think, he’s ever done! He walked in with lots of reminding that when he got into the office and sat down he’d get a sucker. Then we were able to go straight back and he let the dr weigh him(185 pounds 😳)-this is huge (not Kyle 😂 well i guess he is too, but the fact that he allowed for this to happen)because it’s always a struggle. Always. AND he let him get his height. What?! Who is this kid?! He did all this with no fight-he even smiled! He didn’t drop to the ground once!!! 😭Then he walked back to the room sat in the chair and ate his sucker! You guys! Seriously this never happens. Dr. Kundell was very impressed! And so was this girl!
We went over the usual questions and updates. He was able to get Kyle’s blood pressure and pulse (another miracle, Kyle didn’t even spit! I was in shock but waiting for something to go bad)! After about 10 minutes Kyle was done and walked out to help himself to another sucker. That’s when the ball dropped….
Dr. Kundell started to make jokes about him coming up on his 70th birthday in a couple of years. I could feel it coming….he said “and with age comes…” I finished his sentence, hoping he’d have to correct me, “retirement?” But he nodded. I tried to just make jokes so I wouldn’t cry right then and there.
James has been trying to prepare me for this day. Knowing it was eventually going to happen. But I refused to believe he’d ever retire! He couldn’t! But he is…and he just told me it’s happening in 2 years or less. And I need to start preparing…
We talked for a few minutes after James took Kyle down to the car. He told me how he has mixed feelings about retirement and that he loves all his patients, but he’s getting old and getting pressure from his wife. We laughed and he talked about how hes looking forward to enjoying his hobbies more. As we walked together out to the front, He ended with “what a journey we’ve been on together with Kyle!” He’s right. After all he started this journey WITH us.
He didn’t break up with us cold turkey but is definitely trying to prepare us. We used to see him every 3 months. We are going to every 6 months with my homework being to find a primary care that he can communicate with as the transition occurs.
But I’m still sad. Im still scared of not having him as Kyle’s dr. My heart still hurts.
He is the one who sat across from me and when I asked the question, “how do we fix this thing called fragile x?!” He’s the one who had to look into my tear filled, young 23 year old eyes and say, “we can’t fix it”.
Maybe it’s silly that I feel some sort of bond to this dr. But I do! He is the first piece to Kyles puzzle. He is part of my support. He has steered us through this journey. And I don’t want it to end.
I hate change. I hate it. I have no doubt-ok I’m lying I totally have a lot of doubt that we will be able to find a dr that will be as amazing as Dr. Kundell. Will we? Who sees patients on Saturday, because they know certain patients can’t deal with the chaos and the waiting that occurs in a doctors office? Who sits with a mom of a special needs child and tells her how awesome she is, because he sees she needs it? I’m not sure we find that again. I guess this is the part where I don’t see the light at the end of the tunnel. Sigh.
I have met some of the most kind, most genuine, most amazing, and by far most selfless people through mine and Kyle’s journey. It’s the best and worst part. Because that teacher doesn’t always stay Kyles teacher, they move on. Because that therapist doesn’t stay Kyles therapist forever, they move on. Because that respite worker doesn’t stay, they move on as well. So I guess the same goes for drs. Dr. Kundell has to move on. But the best because I will never forget those amazing souls. And the impact they had on my sons life. And in turn, my life.
I just need to focus on what great things those special people contributed to Kyles journey. To my journey. And Dr Kundell was definitely one of those special people, and one that made a huge impression on my heart. And THAT will last a lifetime. ❤️