End of Summer
And all great things must come to an end. I’m not sure I actually believe that coined phrase, but this summer has a been a great one that has come to an end whether we want it to or not.
We focused this summer on family, health and happiness. We tried to spend all the time that we could with the people that we love while ensuring we carved out time to exercise for some mental clarity.
We let Caleb be a 3 year old. We took breaks from braces, therapies and doctor appointments, which in turn seemed to allow us as parents to take a break from the constant stress and worry of having a child with special needs.
We had one heart episode that, for the first time, was corrected without a trip to the emergency room. I believe this is a turning point in managing Caleb’s heart condition. It was late June and I was preparing for my BFF, EJ, to come over for a play date while Dan got a round of golf in with his eldest son. Instead I called EJ in a state of panic as Caleb had just looked at me and said, “it hurts mom, my heart, it hurts so bad.” I confirmed the elevated heart rate and let EJ know that instead I would be dropping off Duncan at her house so I could take Caleb into the ER. We packed our bag with the ER necessities we have learned over our numerous trips:
iPad
blankies
current stuffed animal obsession (which varies from none to the entire crew that sleeps with him at night)
snacks (turns out the snack options at pediatric hospitals are less than desirable)
sippy cup (otherwise you get a baby bottle or a regular cup that Caleb has not yet figured out how to use)
iPhone charger for use of mom or dad’s iPhone for when the WIFI isn’t’ working properly. A Peppa Pig episode interrupted due to a bad WIFI connection will put a toddler that has just been through a considerable amount of stress right back into a frenzy.
Diapers and wipes (you can eventually get this but it won’t be the right size and it likely is not the desired brand – yes, we are diaper snobs
Change of clothes, if time allows
But then Caleb looked at me and said, “it’s slow now mom” and carried on with his activity. I confirmed the heart rate had dropped over 150 bpm, called EJ back, and told her that the initial plans are back on.
Caleb’s cardiologist increased his heart medicine in order to keep additional episodes at bay. We truly don’t know if Caleb continues to have them and is now able to get himself out of them or if the increased medicine has kept them from coming back. Regardless, we are happy that he is growing and better able to articulate how he feels.
Caleb started his second year of preschool yesterday and is thoroughly enjoying his days with his new teachers (Cassy and Karen), his new aide (Mary), his special ed teacher (Lori), and his new bus driver (Lito). He is back to braces, therapies and doctor appointments.
On September 19th, we visit the Gait Lab at Gillette to assess Caleb’s current gait and to provide us a baseline comparison of how it will change in the future. I want the results the of this Gait Lab to minimize Caleb’s struggles. While they have told me repeatedly that we can’t get in front of his upcoming issues that may surface as he grows, I’ll do anything in my power to set him up for success. I’ve never met a child that is more deserving of happiness, joy, love and success.
Caleb is growing and becoming more independent, but he still wants me to rock him and count to 100 before he goes to bed. It’s our time together that I’ll cherish forever. Although the worry and the stress ensues with the start of a new school year, I can’t wait for Caleb to wow his teachers and classmates, just as did the Target customers tonight as he read “lunch combos, $19.99, chips, organics” while I shopped.
Dan and I are so thankful for all of you that continue to reach out to us and ask how we are doing and how Caleb is doing. God has a plan and we love being a part of it.