It comes in waves.
Crashing against my every effort to paddle through it.
Breathlessness paralyzes me.
The feeling may last a moment – or a day – or for weeks on end. Most often it is triggered by an event of sorts. The other evening it happened to be a fair reaction to a bug bite of some kind. The instant rash, screaming in pain for more than 30 minutes until the meds kicked in. She never cries. She rarely feels pain to any degree. I was in tears myself watching her lay there completely wrapped in the sting.
Then calm washed over her and she took to sleep for the last hour of the ride home. She never sleeps in the car.
We get settled in for the night. I have given her another dose of antihistamine. She asks ”RM bed?”
“Yes, Baby. Time for bed. Climb up.” I pull the blanket up, stroke her hair and we begin the whispered exchange, nose-to-nose, breathing each other in.
“Good night,” she whispers. I echo her. “I love you.” Again I whisper back. “See you in the morning.” Yes. I reply the same and gently kiss her perfect, little lips.
Will she still be with me in the morning?
I lie awake adrift in a sea of familiar checklists:
Who do I call first?
Will they take her right away? Who exactly will take her?
Can I hold her before she leaves?
Where will she go?
What will she wear? How do I get an outfit for her in time? I imagine you have to order that kind of thing online. Will they have overnight shipping?
Will we stay in this house? I imagine we don’t have to. No more fighting the school districts, so theoretically we could live anywhere. I don’t think I’d want to stay here. But then again, I wouldn’t want to leave her behind here without me.
Will I go back to work? No reason not to now. Will I be able to?
Will I cry every day? Forever?
Will my heart continue to ache as hard as it does at this moment?
I am being irrational. I should just get up and go to her.
Instead I pull the covers tightly around me and snuggle myself in a little further because I am not ready. I am not ready to let her go. I am not ready for that reality. I do not want to go to her yet.
I am not ready to find her – breathless.
From the time she was born, every moment RM has spent in my life has felt like borrowed time. I understand to my very core that by design every person’s time on this earth is meant to be finite. God has given me this gift of her for as long as He sees fit. That is why I love fiercely and try my best to enjoy each moment – good or bad – because I do not have a crystal ball and I do not know the road ahead for her. She may live to 100. She may not. Children with chromosome abnormalities who survive those difficult first few years still have an unknown future. Any number of disorders, cancers, syndromes or diseases lie in wait.
Love your children, love them hard. Grieve the moments of anger and frustration with tears but keep moving forward. Then when you have had a moment to breathe, go back and squeeze your kids. Kiss them all over. Zerbert those bellies! Let them annoy you, tire you and make you belly-laugh until it hurts. Listen to every blooming knock-knock joke and laugh at the ones that just don’t make any sense at all. Teach them well. Have the highest expectations. Accept nothing but their best while remembering you truly do not know what their best can be so shoot for the moon. Guide them to the road that calls them. Appreciate the strengths they have that may not be well understood by most, but could prove to be universally beneficial to all. Be a cheerleader by teaching them how to find pride in themselves. And remember above all else - you have more to learn from your children than they shall ever learn from you.
So don’t panic. Take another deep breath and ride that wave all the way in. Don’t look back. Another wave is coming in right behind you. Keep looking to the shore and let it carry you closer. Embrace it. Ride it in. Just ride it in. It’s supposed to be fun!