As a Warrior mom we learn life away from home. Especially in the hospital for extended stays. It is often us who experience these times and there’s little we can do to avoid it. We can’t get out of the cruel admission that lands us in that place for days, weeks, and even months.
I saw the Facebook post of a friend and I knew the feeling. Being in the hospital with your non-verbal child creates a maze of tests and often unknown scenarios. The hospital room becomes your room as well, by choice so your child has a voice. Nobody leaves them alone unless there is no other way. Single Warrior moms might need to attend to other kids. But if at all possible you stay too. You are held by the medical team also. You wait eagerly 12-18 hours for the “rounds” to happen again so you can stand there in your despair waiting for what the next plan will be. And often the next plan is far off from what you had hoped. “We’re not going to start food again until Monday.” I remember those words. Your thoughts and hopes are dashed. But what can you do? Nothing. Wait. Watch the clock move, the sun goes down and comes up from the same hospital room. The nurses switch shifts and eagerly introduce themselves and again, you realize another 12 hours have gone by. Each night you crawl into your makeshift bed with a mattress pad that’s barely covering the edge of the bed that is yours each night to try to sleep.
I saw the FB post again when the mother (A fellow Warrior) said at this point, I’m decorating for Thanksgiving and then Christmas. I had to get there. I knew the torture of trying to make the best of this life. You turn torture into reality and try to like it. The warrior mom must make it because there is no other way, your captor is the medical system that you desperately need. There’s no choice to leave for our kids who cannot consume enough by mouth and they are vomiting so much they are keeping nothing down. Maybe their digestive system won’t work so they can’t get feeds via tube. Not eating is a serious subject for any human being, but to not know why. It’s a kind of torture and you cannot let it take you down. You take it with pride, like this mom you just decorate the small cell like room making the most of your new “tiny home”
I headed to Mott Children’s Hospital. I felt strange to be the visitor and not the inpatient person. I brought some food and some new pjs for the sweet little patient, Lily. This mother is so fun and so in charge. We laughed as we visited because she ordered a banner and had a tough time with the order. It took a lot of time to order it and she said it was sort of ridiculous but she ordered it anyway. It came. She pointed it out to me when I got there. “Look at my banner,” she said.” I looked up above the sink area. It said “Give Thank.” She said I guess I’m limited to one thing, “I’ll take it” We laughed and laughed. “One Thank!” It’s these moments of living this very different, very hard life we have but making it fun and silly and just celebrating the outlandish things that happen. She said I’m enjoying the mistake, it’s going with my life right now and we are embracing it.
We Pray for you and we hope you are home soon.
On this Thanksgiving day we can all give a “Thank” for all the blessings we have.
Nights we get to sleep all the way through.
Pharmacies that know what they are doing
Helpful friends and neighbors that help because they care, no strings attached
Medications that get you out of the hospital
Gatherings with other mothers whose story is the same but different
Hospital visits when your on the receiving or the giving end
Medical supply orders that come on time
Doctors that you can confide the truth with and they still help you
Family members that welcome your child
Getting another holiday with your child who is medically fragile
A Thanksgiving Dinner you eat all the way through because you don’t have to stop to caretake
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Happy Thanksgiving to All and prayers and love to those in the hospital.
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