We were able to have a family get-away immediately after her birthday with her physicians' blessings. This was another dream-come-true for Daddy. We all loved it, actually. We began our drive with a prayer and the one on my heart was, "What now?"
We had dreamt about his milestone. We had longed for it. Imagined it. Believed it impossible at times. Yet, here we are on the other side of it. Wylie is one year old.
The statistics...do you remember the statistics? Only about 10% of children with Trisomy-18 who are born will live for one year. Because of this, statistics for those who live beyond a year are not readily available. The medical advisor for the Support Organization for Trisomy 18, 13, an
d Related Disorders stated that "once a child's age is great than a year there is a 60% chance to live beyond age 5 years," (SOFT Care Book for Families, pg. 11).
I remember when we were given this manual in the NICU at the time that Wylie's genetic disorder was officially diagnosed. I opened it and saw the pictures of all the little faces with birth and death dates. It was so overwhelming. I was a puddle of tears and couldn't even speak to the geneticist. I kept the manual but decided to open it only if I had a specific question. We would keep looking at Wylie rather than the black and white words about her diagnosis.
So, now what? We are still in the middle of figuring out COVID-19 and have realized through her first year that most germs (especially the respiratory kind including even the common cold) have debilitating consequences for her. What do we do?
On our trip, Gavin was out with the other kids. Wylie and I were enjoying peace and quiet. I love to be able to just sit and think, to ponder and wonder. In this space, a heard God's whisper. "She's living, not dying."
Yes, this has started to sink in even before those words. We have been home for almost 3 months since Wylie's last admission. We made adjustments for LIFE at home and LIFE with Wylie. Gavin and I alternate nights taking care of Wylie and waking up to give her meds and first feed of the day. The children all have household jobs that disperse the burden of chores. We have a schedule for cleaning her equipment. Someone is always by her side. We are adjusting to caring for her LIFE.
Later, I was reading the Message paraphrase of the Bible. I've really enjoyed that lately. I'm reading in the book of Matthew and came to this story:
"Another follower [of Jesus] said [to Him], 'Master, excuse me for a couple of days, please. I have my father's funeral to take care of.'
Jesus refused. 'First things first. Your business is life, not death. Follow me. Pursue life.'" (Matthew 8:21-22)
So, with this whisper and these Words, the next step is life. We are planning for life with Wylie. We have signed up with a nursing agency to try in-home nursing three days a week in preparation for homeschooling next year. We are working with an OT and PT to help Wylie get stronger. Her pulmonologist and complex care doctor have a close eye on her to see what gains she can make before the next respiratory season. We are still having to be very careful of all germs to protect her LIFE.
I think it's important that I admit to you, Warriors, that I feel tired, worried, overwhelmed, lonely, and put-out at times. Here it is, though: I don't stay tired, worried, overwhelmed, lonely, or put-out. That's your prayers. That's your love. That's God.
Certainly, all these emotions are a normal and expected part of LIFE, but who wants to have them all the time? Not me! I am so happy that LIFE with Wylie is full in the most real, and best ways that we can hope for.
"Without oxen, the stable stays clean..." (Proverbs 14:4).
You know that that means? With oxen, the stable is dirty. With LIFE comes mess. Bring it on, Guy Lewis, Emma Katherine, Kendall Marie, Beau Vincent, Geneva Lee, and Margaret Wylie. Bring it on!
