Having a medically fragile child requires a lot of attention. Especially, when they can stop breathing at any point and require immediate resuscitation. Cole requires a nurse, to Lexi that simply means he has a playdate everyday and she has no one to play with because of Covid19. We have to social distance to ensure that Cole doesn’t get sick. Cole has therapies; PT, OT, speech, and DTH. With all of this attention, it’s absolutely imperative to remember your non medically fragile child.
Lexi is the absolute best sister Cole could ever ask for. He adores her, looks up to her, and mimics her every move. Much of his progression has been due to the incredible support of his big sister. For example, the first bite of food via mouth was Lexi feeding her brother as we were busy socializing at a restaurant. Her encouragement and example helped him take his first steps when he was 3 years old. The first time he ever got up by himself in the middle of a room, Lexi cheered for him so loud and it made him so excited, he wanted to do it again and again. In 1st grade, Lexi wrote “The Best Part of Me” Where she explained the best part of her body is her hands so she can talk to her brother. After Cole got his cochlear implant, Lexi, repeatedly, worked with him to practice hearing. In every milestone Cole has had and continues to have, Lexi is right there supporting, cheering, and being his biggest fan!
This trip to Cincinnati for Cole’s Magec Rod surgery will be the first time my husband and I have ever been away from our daughter for an entire week. Lexi will be in fantastic hands, we are fortunate to have a phenomenal support team. Nonetheless, this will be hard and we will miss her to pieces. After dinner tonight, she begins telling Mark and I all about her emotions; Excited, sad, scared and happy. As I sat back listening to this, I thought… WOW! I didn’t even think of all of the emotions she had running through her. Of course, she’s excited to spend the week at our cottage with her cousins and Grandma. She’s going to have a blast, boating and swimming everyday. Sad because she, too, has never been away from us and she’s going to miss her Mommy, Daddy, and baby brother. Scared because she knows her little brother is going to have his back cut open and she knows he doesn’t want to go and her heart hurts everytime he has to endure pain. Happy because she gets to take her kitty with, to the cottage. I gave her a huge hug, told her I was so proud of her, and told her the rest of the night is hers. This lead to Mark, Cole, Lexi, and I going outside and playing soccer, her rules… Of course.