As your kids grow up they should get stronger, more capable, more resilient…. but not always…

We were told when Angel and Soldier were young and we had no idea what was causing their delayed milestones that their path was not known. Then again when we found out the gene flaws causing their issues that the only research into their main gene flaw was on rats who never survived long term.

The only way to cope with thoughts about the future is to frankly lock them in a drawer in the back of your mind and not think about them. Every now and then though the drawer slides open and you are forced to face changes that are not the conventional path of getting bigger and stronger…

Angel has been struggling a lot more recently with tiredness. Short walks are exhausting her. School wipes her. She really struggles with any physical exertion. I’ve got a therapy team around her again and today we agreed that Angel would benefit from a wheelchair. She often asks to sit in Soldier’s if we are out. We had a little chat with her about whether she would like this and she jumped at it, having that option to sit down when she is tired. Bless her, she has been struggling by, trying to please everyone around her whilst telling us in the quiet of her room normally at bedtime that she is so very tired….

We really don’t want to think about what the future holds…. we really don’t want to think about how things are getting more physically challenging for both Angel & Solider….we really don’t want to think about how even after a half mile walk they both want back to the car…. it’s time to slide that drawer shut again, take a big deep breath as mummy bear and get on with living life for today….

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