Battles against terminal illness, anxiety, and life!

Balance

“Weeeee!” trilled Genevieve as she spun in circles in my bedroom. She stopped abruptly and swayed unsteadily. Losing her balance she declared, “I like Brae Brae!” That’s her affectionate nickname for Braden, which she can clearly say. My poor heart broke into a thousand pieces. My little girl realizes that her brother lacks balance. What else does she notice? I have relished this time with them as equals. I have lived inside every moment where she has needed his help. I crave those moments where he is clearly the big brother that can do the things she can’t quite do yet. I know all too soon she will leapfrog over him and the tables will turn. I just want to pause time, to hold it still for just a little bit longer. Alas, there is no stopping time.

To keep balance as a parent of not just three children, but two and a super-duper awesome one with extra needs, my husband and I went on a date yesterday. Funny how a date used to mean the two of us with the children at home. Yesterday it meant the two of us and the baby. That used to be just a normal day! Regardless, it was a nice break. Miss Piper slept most of the time, and we enjoyed some face time with each other. I think we’ve finally found a sitter that doesn’t consider Braden’s needs to be too much. He was so happy with her that after she left he said, “Mommy! Can you go on another date so we can play with her again?” I beamed! I didn’t return to find him stuck in a soaked pull up, covered in food or nasal nasty, upset, or anything else completely unnecessary. This was such a relief to us. All three of our children mean the world to us, and to find somebody who believes they are all worthy of love, dignity, affection, and fun means more than you can imagine. Every once in a while, we need a break, and I’m thankful to find our new sitter. Thanks a million if you are reading this girl!

It’s not a difficult task to find a thousand different camps or activities for an average child. However, having one who will always deal with urinary incontinence makes things a challenge. You can rule out so many classes due to the “potty trained” rule. Not sure what the deal is. He wears a pull up, always poops on the potty, and they won’t have to change him at all. So, why can’t my child attend? There is even a “special needs” art camp here in Huntsville that has the same rule. Braden would love that! Yet, he gets excluded even from that group. Makes me angry, sad, and frustrated. He deserves to have fun too! We did find an activity that he really enjoyed this past weekend. We took him to Dinner by Design to prep a three coarse meal for Valentine’s Day dinner. Both kids had a great time! Finally something that he can do. It’s not a camp, but he thinks it an awesome treat. The owner and staff treated our entire family with amazing respect. We couldn’t ask for a better experience. The look of absolute pride on Braden’s face made us all light up.

Little Chef

Chef Braden

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