For over twelve and a half years, Dave and I have lived in fear. Real, tangible fear that our children might become irreversibly sick, immobilized, and even die before us. When Ben was 3 days old, a nurse told us he might not see his first birthday, let alone his 10th. Almost exactly 7 years ago, doctors told us our unborn daughter had brain damage and hydrocephalus.  We hadn’t even met her and I can say I have never (and doubt I will ever) been more afraid than I was on that examining table.  During their ten, combined and extensive surgeries, seizures and procedures that would follow in the years to come, the fear factor is great. Would they wake up? Would there be permanent damage from anesthesia? Would the surgery fix what it was supposed to? Will she be paralyzed forever? How long would the recovery take? Could we handle it? How would we manage their “new normal.”

This fear was so isolating. So lonely. We have always been very open about our story because it feels better to share the burden than to manage it alone. About six months ago I was feeling so overwhelmed by our life. Ben’s surgery in 2019 turned our normal upside down. I had been handling our special life for so long that I felt like no one could really understand how it had multiplied (again) and what new challenges we were going through. How could I discuss things like screen-time and travel teams with my friends when, medically, we were handling so much? I reached a breaking point and wrote an email to my nearest and dearests to describe how I was feeling and what Ben, and we as his parents without medical training, were going through. Sharing the burden was so freeing. Not a thing changed with what we had to do each day and night but knowing that my people had a better clue as to how we were surviving was so helpful.

Not long after Ben was born, we started looking for support from other parents who could relate to our situation. Finding other families who were affected by Menkes Disease wasn’t easy, especially in 2007 without social media and a diagnosis rate of 1 in 200,000. Thankfully we found a few who I call some of my closest friends now, which I think is pretty remarkable. Once Kelsey came along, I searched for families that had experience with her many diagnoses. Finding someone like that, alone, still hasn’t happened. I’ve given up hope on finding a family who has TWO children with challenges closely related to ours. Humans and mothers crave connections and empathy. We want our children to shine but we also want them to be just like the other kids.

Since the start of the pandemic we are living through, one thing has been obvious to me. We are sharing the burden. With the whole world. Not a single person has been immune to Coronavirus or it’s impact. There is a shared misery of the stay at home orders. Schools being canceled. Trips being canceled. Life being canceled. Knowing that I can text my friends and say “I HATE THIS” and they will promptly reply with a “I KNOW! I DO TOO!” is comforting and also unfamiliar. Usually I’ll blog or text or chat over a dinner out (remember when we could do that!?!) about our family struggles and the response is “I’m sorry. I don’t know how you do it. You are so strong.” But during the pandemic, the feelings are mutual. Shared.

Daily experience with fear has definitely given me different perspectacles when it comes processing Covid-19. During this parenting season of our life, we have decided NOT to live in fear. We HAD to face challenges like surgeries so our only choice was to listen to the experts and trust our gut. Even when our gut was ready to puke because we were so scared, we had to put one foot in front of the other and sign up for heartbreak and hardships. We made our best judgements to help our children and to live a full life. We also took the trips, played the sports, and danced the dance when it looked different from everyone else. We wanted to. We had to–despite our fear.

After two months in quarantine, I can see how fear and judgement is creeping in when it comes to considering resuming our old life. Some friends are planning on never flying again. Some plan on flying with their spouse but not their kids. Some haven’t left the house. Others have isolated with certain friends and family and others haven’t seen a soul. Some wipe down their grocery bags. Some walk in the park with a friend in a mask and others play with neighbors everyday. Some will travel to Florida and others are scared of Ocean City.

I think the best we can do is our best. We can listen to the experts and make the best decision for ourselves and our family. And even though we all have the shared experience of this pandemic, we should remember that we are all different and we all want the best for our friends, family and communities.

Happy Mother’s Day to all of you and yours. May this weekend be healing and replenishing to your spirit. And let’s be sure to show up with love and a collective compassion to everyone who is just doing their best to survive.

Love,

Kim

At the end of January, I started a bad cold. It was the same cold my lovely, 5-colds-a season, daughter had. My version turned into bronchitis. It was miserable. But the real fun began when the coughing was so bad that I broke a rib! Well, I think I broke a rib. My doctor said it was more likely a pulled muscle.

Well. Whatever it was, that $h!t HURT! I couldn’t do anything. I was in so much pain. Coughing, bending, laying, sitting, sleeping…were all torture. No pain killers, not even the opioids the doctor gave me, worked. I begged Dave not to travel early, one Tuesday morning as he was suited up and was ready to head to the airport. He had to go, but promised he’d come back early.  I had to rely on neighbors, family and friends to survive until his return.

But guess what happened? Since I could no longer lift Kelsey onto the toilet, onto the bed and onto the barstool for her breakfast, SHE HAD TO DO IT HERSELF! Because of my broken rib, she became a more independent child!

I learned that Kelsey, can in fact, pull her pants up and down on her own.  Her cute tushy hangs out a good bit of the time but it’s good enough for me! She has gotten just tall enough to shimmy back onto the potty and back up again. Now, a lot of this is owed to her wonderful “close adult support” at school who demands more of her than I do, as well, but the need at home made it more of a reality. She still seems to need us to come in and talk her through the process, and has had accidents while waiting for that support, but we are getting there.

After her seizure, and resulting paralysis, a year and a half ago, she is still experiencing limited use of her left hand. Before that seizure, she could climb up and down onto the barstool where we eat most of our meals and onto her trundled daybed. But after the seizure–18 months later–she was back to being hoisted up and down because she didn’t have the second arm to do the work. That’s a lot of lifting of a 50 pound, dead weight kiddo.

Because of my immense pain, I literally could not lift her. So for meals we switched to eating at our beautiful, neglected farm table. She has a chair with a footstool at the table but that, too, was always too involved for her to get into on her own. Since I literally could not even help her get into a table-height chair–she had to do it on her own. And apparently, after many tries, she can! Hallelujah! She still can’t climb onto the barstool like she once did but she’s getting taller and soon enough I think she will be able to slide down, a la the toilet!

A month and a half later, I’m still experiencing pain from the pulled muscle, broken rib or a combination of the two. I can’t lay on my back and sitting for long periods of time, especially in a comfortable, lounge-y chair is still painful. I can only sleep on my right side. It sucks but it’s much more manageable.

I tell you all of this in hopes that the social distancing we are doing to flatten the curve from Coronavirus will also yield some positive changes in our family and yours. Right now? I can’t see it. I’m pretty depressed with the thought that the kids will not go back to school for a lonnng time. Please don’t mistake this post for a Pollyanna view on things. I am NOT happy. The kids are NOT happy. I don’t want to teach them, nor do I want to have a picnic at the stream on a Thursday afternoon in March. I don’t want to watch a virtual trip to the zoo or even bake cookies.  I don’t want to take my almost-seven year old–who doesn’t understand why she doesn’t have school and can’t go out to lunch at The Greene Turtle– on an hour ride in the car, because even at her age it calms her like an infant.

But, maybe it will become more manageable. Maybe our kids will learn to do something they couldn’t do before (No, Karen, I’m not talking about changing a tire or learning Spanish). I’m sure there will be silver linings and ways to look on the bright-side.

This morning I decided I needed to go back to listing three things I’m grateful for before getting up. Just like Oprah taught me. Gratitude always sets your mind in the right direction. Today I’m grateful that no members of my family are essential employees that have to go to work. I’m also grateful that today is Saturday and Dave can be on Kelsey duty. And finally I’m grateful that we have a spacious house with many rooms, corners and outside spaces to get away from my beloveds when they’re driving me freaking insane.  🙂

What are you grateful for during this weird time? More importantly, what’s driving you out of your mind? What are you pissed about? I find I feel better when I know others are suffering along with me!!

I know…we can do hard things…it could be much, much worse…blah blah blah. Some times a good gripe session is also very healing.

Good luck today, friends.

Love,

Kim