{More Than} Coping

Heart beats fast, colors and promises

How to be brave

I always think about my girls when I hear that song. I think and I wonder and I marvel that I am the one who gets to mother them. Of course, loving my babies is easy for me. It’s not something I ever think about. I, as do all mommies, just simply love them.

But when my daughter Grace was born with congenital Cytomegalovirus (cCMV), I did think about and wonder if my simple mother-love was enough to help her make it.

My husbands solid heart and my mostly blubbery one were tangled in worry before her birth. Could we love this baby enough? Enough to overcome the unknown challenges she might face growing up and even through adulthood? Where would any special needs, any extra needs fit into our little life? We simply couldn’t predict what our life would look like after baby number two was born…

…because no one knew.

I didn’t know what was wrong. Brandon didn’t know. The doctors didn’t know. My Mom and Dad (who I still consider the know-it-all-superhero-problem-solving pillars in my life) simply didn’t know. When Grace was born 7 weeks early, at a beautiful 4 pounds 15 ounces, in seemingly great shape, we still didn’t know.

It took 11 incredibly long days, and an equally incredible team of doctors to figure out that Grace had CMV. To read what that was like for our family please click here.

It’s been almost seven months since we sang happy birth day to our little Grace. She is growing and healthy and smiley and strong and we are thankful for each happy day we get to spend with her. She is beautiful and calm, but very curious and concerned about her surroundings.

We have three different therapists come weekly; one for vision, one for hearing, and one for development. Grace takes a strong antiviral twice every day (that is still a struggle to remember to give her even though it’s been 192 days and 362 doses since she began). She needs bloodwork often to make sure it isn’t wrecking her bone marrow numbers. Grace is profoundly deaf in one ear with mild loss in the other. She needs a helmet and two hearing aids and we are starting to learn sign. Because of the degenerative potential of CMV we see the pediatrician more often than normal, the infectious disease doctor every few weeks, an audiologist, ENT, GI doctor and ophthalmologist as well. Grace has to have ABR hearing tests often and an MRI/CT scan this month to check on the calcifications in her brain and look at the structures in her ears. She has a rare condition called bilateral superior semicircular dehiscence that causes a thinning of the bones in her ears (this is a new diagnosis that I know little about so far). I have to fight insurance claims and medical bills and Brandon has to chase circles around himself getting secondary health coverage for all her needs. We have to figure out a family budget to squeeze this all out of our income.

So how do we cope, all of us who love her? How do I cope as her mother? How do we manage a calendar so drenched in appointments that I can’t even read it anymore?

Well, the answer to that question is probably the most simple and the most complex answer I could ever give- I just do. We all just. do.

I have realized that my simple-mother love is magic and it makes the hardest of days bearable.

I have realized that Lilly, my two and half year old wild woman, is also magic- pure joy- and she teaches us all about happiness. She is patient with Grace and always my pleasant little sidekick as we schlep all around the city to various appointments. Where I see another long wait in a less than comfortable office, she sees (and makes) new friends. Where I see evidence of sick children and bedraggled parents, she sees colors, shapes, fish tanks, and art. Where I see the hospital, she sees a playground. Sights, and sounds everywhere, she forces me to see beyond the obvious, see things that she is usually experiencing for the first time. And I so love that.

I have realized that I am able to relinquish all control and actually let people help me. Babysitting, driving, picking something up at the store, a hot coffee, a shoulder to cry on- it all helps. People really do care about us and about Grace and I’m so thankful for that.

No one can predict the future for their children, what they will or won’t need, what they will or won’t be able to do. My Dad thoughtfully pointed out that we may have a leg up on other parents. We don’t take Gracie’s health for granted, we are already prepared for the what if’s. We are screening for the just in case, and the maybes. We know the possibilities, think about them, talk about them, and get ready. By the Grace of God (not a pun but a truth) we may never need to execute any of these thoughts or plans, but we certainly will never be blindsided.

Grace will change and develop and grow into the person she is destined to be. She is not the same as your child or my other child – nor would I want her to be. She will never miss out because 1. I am her mother and 2. this is the only life she will ever know. I am learning that all children are special, or maybe that no children are “special” just that they are unique individuals living a life handed to them upon entering this world.

I refuse to continue to wonder what she can’t do, what will be hard for her, where she will struggle with different ability and frustration. I am a teacher at my core and will so teach both of my children whatever they need to know to be happy. So basically, back to the beginning, I will just. love. them.

My mother-love may be simple, but it is fierce. In dedicating myself to Brandon in marriage, I have committed myself to our children in motherhood; the girls we have already and any children that may still come to be. For them all I strive to be knowledgeable, strong, committed, and focused in any care they might ever need. I will give them the best tools possible to help them grow and learn and succeed. I reach out to others when I don’t have the answer, and allow support to be given when I am weathered and approaching the end of my rope.

I have also begun to realize that the human brain is full of empty compartments. Compartments that stay empty waiting for this kind of thing to compartmentalize and tuck away only opening when the contents are needed. I don’t need to worry every single second of every single day. And I don’t need to feel guilty that I’m not worrying either. Worrying is actually pretty non-productive when you think about it- which I do- so I try not to anymore. I talk things out with Brandon and with my parents. I get it out of my brain or move it into a compartment and only open those doors when I need to. Not worrying doesn’t equal not loving. I am trying to be mindful of the moments these days. The good ones. The experiences we are going through as a family right now. They far outweigh anything else in our lives and so rightfully take center stage.

So…that is how I cope, that is how I manage, and that is how I get by.

With happiness and hope and joy and excitement.

(And coffee. Lots of coffee.)