On September 18, 2017, Mila Rosaleigh Lebow was born at Portsmouth (Virginia) Naval Hospital. All of the nurses were so taken with her. They stated unequivocally that Mila was “perfect”. I was happy to share the moments around her birth.
Our son*, Wes, is in the Navy and missed the birth of Mila’s older brother, Kaine. Fortunately, he was present when Mila arrived. But another deployment approached, and Rachel was often holding down the fort with few supports close by. My husband, Les, and I are retired and lived four hours away in Maryland. We were able to fill some gaps when needed.
Rachel and Wes are fiercely independent. We helped when we were invited to do so, and stepped back when not. We trusted they could make their own decisions for their family. We were happy to be there to support when needed.
Shortly after Mila’s birth, Krabbe began its devastation. Mila often cried inconsolably. She did not often pick up her head or reach for toys, and she smiled or laughed infrequently. The base pediatricians had no explantations for her discomfort and lack of progress. We often heard, “Every child develops at her own rate”.
Rachel moved to Mississippi to be with her parents while Wes was deployed. Her mom, Beth, is a nurse. They reached out to LeBonheur Childrens Hospital in nearby Memphis. Wes returned home just in time to be with Rachel for the diagnosis that NO ONE wants to get: KRABBE, infant-onset. At age 11 months, Mila was too old for treatment. The life expectancy: 2 to 8 years.
As grandparents, we were in uncharted territory. The instinct is to swoop in to “fix”, but there is NO FIX for KRABBE. What’s more, Wes and Rachel are adults and this is their family. We couldn’t fix it for them, even if there was a fix.
Our first step was to meet with our friends, who, coincidentally, lost a granddaughter, Lux, to a different leukodystrophy at age 19 months. Their path was to support their children’s decisions, no matter what; to give Lux life experiences to make each moment count (our friends took Lux sailing!); to “stay in their lane” and not get ahead of the parents when it came to telling their story.
In short, for us: Be There. Follow the parents’ lead. Live boldly with our sweet Mila!
Mila is now 5. We are there when invited—and try not to take it personally when we are not. We make regular visits to their new home in Florida. Sometimes we have been asked to fill gaps when needed—this past year, watching big brother for a week through a scary hospital stay for Mila, and later spending a week in a motel with just us and Mila—and tons of equipment—while her family recovered from COVID. We help gather the family to celebrate every birthday—each one more precious than the last, because we know it could be the last.
Our task: to support them, even if we have other ideas—it is their life to live; to be there without judgment to support BOTH of them, especially when they don’t agree with each other on the best way forward; to find the balance between helping and OVER-helping. TO. JUST. BE. THERE. We can’t do any of that perfectly, but we are doing the best we can.
Mila is a “Warrior Princess.” I’m hoping that someday we will unlock her thoughts. I have been told that the technology is available, and the schools are working to make that happen. I am in awe of Rachel, Wes, and Kaine. They are warriors as well.
We celebrate and support NOW so we will have no regrets later! There is no way to prepare for what we know is coming. We just live each day—with gratitude.
And we LOVE, LOVE, LOVE
* Full disclosure, Wes is my stepson. I mention this because Wes has a mom who is also Mila’s and Kaine’s grandma. She is “Nana”, Beth is “Grandma”, and I am “Mimi”. Three grandmas and three grandpa’s. Lucky kids!
Becky “Mimi” Lebow