Sometimes you do your best, and it’s not enough.
Sometimes your have six children with a million needs, and make sacrifices to get the most needs met as best you can.
Sometimes it’s not enough.
I can’t take away autism.
I can’t undo cerebral palsy.
I can’t make Mary stop breaking her implant processors over and over, or make Barrett speak in a big boy voice, or erase the drug exposure they all had before they were born.
But I can love them.
I can love them, and I can try.
Sometimes everything we try feels wrong, in a no-good very-bad day kind of way.
Like when you have to take off work so much for the baby, that the company finally lets you go.
Or when you have two weeks to find a new house before school starts if you want your children to have sign language exposure.
Or when you are playing ninja with your boys and break a bone in your foot, and no one can really do anything about it.
Or when you are changing the baby and trip on the electric blanket and throw her onto a pillow so she is safe but you crack the bone in your wrist on your way down.
Or when your daughter says she is scared at night because she saw a spider, so you cuddle with her so she can go back to sleep, except there is a spider and it bites you instead.
Or when you leave your toddler’s feeding tube out for a few days because it feels so good and normal, and she seems to be eating, but it turns out she wasn’t getting enough liquids and so it’s the worst mom fail ever, and you have to hold her down crying to put the tube back in again.
Or those mornings you are awakened startled because the baby isn’t breathing and alarms are going off, and you might have a heart attack from the jolt it gives you, and you could swear you literally flew from your bed to hers.
Or when you spend the drive home on the phone with palliative care for one child while realizing the doctor visit meant missing the Thanksgiving program with another.
Those are hard days.
But it doesn’t mean they aren’t full of miracles.
Chaplaincy residency gives me opportunity to serve others the way so many have served me, as well as hours of group supervision to process the vicarious trauma we have endured the last year or two or five.
That’s why I cry when a nurse is kind to us. That’s why I cry when a doctor takes time to teach and advise. That’s why I cry when a doctor’s office returns a message. That’s why I cry when a school teacher stops by the car after long hours to be sure I am in the loop with my child. Thats why I cry when busy SoonerStart ladies let me stop by so my little one can show off her progress. That’s why I cry every time I leave a visit at DHS with the people who worked so hard for my children for so long. That’s why I cry when so many people work so hard caring and loving the children I promised to keep well and healthy and safe.
Because I am not enough.
It takes all of us.
I cry because it matters, those small moments. I cry because for our family, it’s the difference between life and death, between functioning or not, between health and medical crisis.
I cry because these good people are everything to us, and there is never a way we can pay them back or thank them for all they have done or show gratitude for the miracles we have experienced as a family.
Even our friends, or friends of friends who don’t even know us, have raised a third of our goal for our list of medical supplies. They have passed on clothes and toys and even a turkey. Other special needs moms have encouraged me, while others have helped with rides or babysitting or gift cards to try and balance the stress.
Tomorrow we even get to go to a children’s museum for free, our whole family, because they will let us come if I write a review like a sponsored post on the blog.
How cool is that?
It’s so much love!
It’s people who aren’t just good at the jobs, but people whose hearts are golden and spirits bright.
That’s what I am thankful for this holiday season: love, and the kind of love that gives life.
Once, our doctor said to pay attention when Kyrie tells stories about times she has nearly died, or even did die but was resuscitated. She is young, so these stories come in pieces and words tricky to interpret sometimes. But we have shared so many of these experiences ourselves as witnesses with her, some of them have been very sacred the things we have seen and heard.
Crazy as all get out, if you didn’t believe that kind of thing.
But I remembered what the doctor said when Kyrie started playing CPR on her dolls.
Her teachers saw we do it, and SoonerStart saw her do it, and I saw her do it.
She is not exactly cognizant when we have had to do rescue breaths on her, so how would she know about that?
She was doing it today as she ran to the doctor’s playroom as we left today, so I finally just asked her about it.
What are you doing, Kyrie?
Breathing my baby air!
Because Kee-yay no air ouch scare me ouch and dark and up up up Jesus Grandma Neen Grandpa James up up up we watch mommy. Breathe baby! Breathe baby! Mommy breathing Kee-yay air. Grandma Neen Grandpa James no hug. Say bye bye Kee-yay! Love you later bye bye! Kee-yay down down down with mommy air.
Then off she toddles, as if nothing happened, as if she didn’t just spew profound pearls all over the floor.
What do you do when your one year old tells you that, and then shows you how to do CPR on her baby doll?
(Grandma Neen and Grandpa James are my parents, by the way, both deceased, and no doubt as in love with Kyrie as the rest of the world is.)
And so sometimes, even on the hardest days, miracles com.
And often, they come in the from of a people.
The doctor who gives you a hug when it’s been years since you had a mother. The nurse that sacrifices her very life energy to care well for your child. The teachers and therapists and speech path that give your child a chance in the world.
The children themselves, who have endured so much but smile so brightly.
It makes me cry sometimes, how hard life is… but not because it is so impossible.
I cry because we are not alone, and because of miracles, and because of angels that walk among us.
That’s what life and love are, and that’s what I am grateful for even today.