We took a little family trip for Anna and us. Another beautiful family with a young adult with Wolf-Hirschhorn Syndrome. We met this fabulous family in 2003. We have remained in touch and visited for many years. This is always important, but in this special needs lifestyle it can be hard to find a place to go where your normal is theirs. We find this here.
You never know how things are going to go on a roadtrip. We got a later start than normal. This can be true for any family but when you add the stuff you need to take and pack it gets busy. Us Warriors have a lot on our mind when packing. That’s the key to this trip, my friend will have anything that I do not have, diapers that fit Anna, underpads, etc.
It’s not strange that we have to dose meds, pack syringes, push a chair all over her house. You find extreme accommodation at these places. There is a great deal of love and honor in the family members. Her adult children know Anna, they ask about her and they are engaged with her. The child with her syndrome, Brianna, is really into her. They hug, they scream with delight and they are just together in a way that is really enjoyable to watch. They have their own unique kinship. I have a tradition of dressing them alike. Time for two friends to have their own little party.
We are soaking in our sitting time. A thing that not many of us Warrior families have. We have sat on the back porch and have enjoyed her new adopted dog, Levi. We held a newborn, not even one month old. We have sat and enjoyed life, with nothing pressing that we care about today. A sense of taking the time to feel the moments that matter.
We are going to mass together, then to a park with adapted equipment. We have had great food and walks together almost every day. I think I have found the perfect birthday gift for Anna since I have been here (no spoilers yet). I am relaxing, a thing that we do rarely in this lifestyle.
Stay tuned for the upcoming interview of my very good friend, Mary Keller, 29 years in her Warrior Life. Coming next week.
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