Journal entry by Cheryl Barnard —
To all of my sweet friends who have been on this journey with us, we want you to share once more with us, but now in our good news- Yesterday was our first completely medication FREE day! Tomorrow will mark one year since Judah was first hospitalized in 2019 and that feels significant to have this landmark in his recovery be so tied to the onset. In January of this year we went to Houston and when we returned we did a final EEG in Tulsa to make sure no more seizure activity was showing up. The EEG showed all clear so we started a seven week weaning process of the last of his medications. I wanted to wait until we had successfully completed the wean without seeing any changes before sharing the all clear. Well, we have our boy back!!! I have tears just writing that. Judah turned 8 last month and I had wanted a big birthday celebration this year because we weren't sure he would even see his 8th birthday. It was a bummer to cancel but he handled it well and we found other ways to celebrate and have added celebrations this month as he has weaned the last two medications. (seriously, 2020 and the quarantine has got nothing on 2019 for me still!). So, thank you for supporting us this past year and for loving Judah through to his 8th birthday and beyond! And hopefully next year he can actually finish a school year at Jenks!
I went back today and re-read many of our Caring Bridge posts from the past year and a few things stood out about this journey so if you want to read more...
-We were so instantly supported by people and friends and that made a HUGE difference for all of us. I am especially forever grateful for the way people stepped up to take care of our girls while Judah required all of Micah and I's attention. They were insulated from the worst of the trauma of this experience because of your care and help. When I see last year's Easter outfits from Heather H, or the Easter baskets from Julie, or think of the transportation from Stephanie, the sleep-overs at Eric and Heather's, the coffee runs and food drop-offs from many, the prayer groups, Iris and Matt for keeping Rosie our dog, the beautiful homecoming celebration from our neighbors, the new clothes and snacks and beds to sleep in in Houston from Dane and Meghan, the basket of supplies from my mommy cocktails group, the weighted blanket from Jennifer, the gift cards from our baseball team family and Jenks families, "Thomas the bear" from Mrs. Thomas...so grateful. We have saved all the cards he received from his classmates and baseball team for him. Those cards filled the blank space in his hospital rooms (and they went with us to both cities!).
- Thank you doctors and nurses and scientists! This is a new diagnosis in the medical world and much has yet to be learned about this illness, but we always had caring people trying their best to help us.
- I was really good at minimizing and sanitizing the trauma and events we were walking through! I read recently in a group for caregivers of this disease that many can't talk about the beginning phase of this illness because it is too traumatic and also doesn't sound real or believable. Going back and reading our posts I see that was the case for us too. I have some footage captured and some pictures but even then it felt too invasive to record the worst of it.
- we left the hospital on six medications, and one year to-the day later, he is medication free! Not all who get this illness fully recover, and to have recovered and be medication free at one-year is really great!
- Judah has IV scars on his hands and arms that medical professionals notice, but other than that Judah doesn't remember much from this time because his brain was not in a place to collect or retain memories. That is a gift. As a family we talk about the year and events within it, but mostly with awe and gratefulness for where where we are now. Judah doesn't really like to talk about it very much right now, and we try to respect that.
- I wanted so badly to have an instant miracle but his healing was one we had to walk out. To us, that still doesn't minimize God's role in his recovery. We still give God credit for where we are today and that he has recovered at all with the help of doctors and the right medication. It was brutal, but we are on the other side and already we have been able to help others that are finding themselves in the middle of medical uncertainty. Because of what we have gone through we have a new understanding and empathy that we otherwise would not have had. I can see some of the ways God is already using this for good even if it is not the path I would have chosen for my family.
Again, thanks for taking the time to read and care for our individual family. We are on the other side.
- I wanted so badly to have an instant miracle but his healing was one we had to walk out. To us, that still doesn't minimize God's role in his recovery. We still give God credit for where we are today and that he has recovered at all with the help of doctors and the right medication. It was brutal, but we are on the other side and already we have been able to help others that are finding themselves in the middle of medical uncertainty. Because of what we have gone through we have a new understanding and empathy that we otherwise would not have had. I can see some of the ways God is already using this for good even if it is not the path I would have chosen for my family.
Again, thanks for taking the time to read and care for our individual family. We are on the other side.
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