Journey

What I Would Tell You
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention; I’ve grown accustomed to the curious eyes of onlookers. Our daughter was born seven and a half years ago, and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we’d imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day — the car ride home. Cerebral palsy can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors, and as I passed you, our eyes met and I smiled at you. You smiled back, and for a moment I knew you knew I understood.

If I could, I would tell you — although you might not believe it right now — you will be OK. I would tell you to dig deep within yourself because you will find the strength and resilience somehow, and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all the services and resources available. Find someone who can learn how to care for your child so you can have breaks and so you and your partner can go on dates — even little ones like a 20-minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best, and no matter what you’re told by the doctors and other professionals, you know the answers. You will teach them about your child. At times you will question the validity of your intuition, but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy, and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less traveled, and you will feel alone along the way, especially in the company of healthy children and their parents. Yes, you will feel isolated, but know we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but don’t let the internet overwhelm you. Having some trust in what your child’s specialists tell you can be grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you this isn’t an easy life. It’s tough, there’s no doubt about it, but you’re capable, and the rewards are great. You may never see your child graduate from a university, walk down the aisle or give birth to your grandchildren, but you will feel pure joy when your child laughs for the first time. You will celebrate the moment when you connect with your nonverbal child. You will call your spouse at work to tell him that she has gained 4 ounces because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy, but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that others will not get it. They can’t. This is a unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile, but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bull.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts, and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it, like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from seven and a half years ago. And you will want to run to her and hug her and tell her that everything will be OK. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you will smile at them and walk by. They have their own path to travel, and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that this mother’s searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

Amen!! That's the best way I could put that! I have seen this myself. Some days I have the guts to introduce myself and share our story, some days I admit I don't. The way Arkansas Children's is set up with the neuroscience center, it's hard to see who is with what clinic. It's almost set up like an ER where you have the nurses station and rooms but several doctors in each area. You don't know specifically what specialty other then neuro related. Yet like the ER, you know you could be there for a while. We have had that happen with seeing the kids' neurosurgeon. This was way before my son was born. Yet I try to be patient knowing that we have been that patient before too. At least I was when I had to get an unplanned c-section with my son. 

On this journey, you see so many faces. So many families labeled by a diagnosis. Yet what many don't see is the people behind those labels. I see new faces every time we are at one of our three children's hospitals and at the Ronald McDonald house in Dallas. Though you also soon learn who the frequent flyers are as you become one of them. Our lives do revolve around appointments and our children but what does get hard is not letting that consume us.

Yet everything said here sometimes is still hard to do. Some days you wake up and are ready to go and fight. Other days it's like, "Bring on the coffee and I'm staying in bed!" kind of days. Our children need us. If we won't fight for our kids, who will? Honestly!  If we don't, who will?

The question was asked with the link I got the original post from was this: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?

I would tell myself first of all to pace myself. Don't sprint through this marathon or you break down before the first mile is done. The journey will last until our time is done on Earth. Period. I would also tell myself to NEVER be afraid to be assertive and speak out when you feel things are not going right BUT to be tactful and kind too. Switch doctors if you need to even if they say you can't. YOU are the parent, not them. When it comes to clinics and insurance, usually the person you are talking to directly is just a middle man and has likely dealt with enough nasty people for one day, so stay nice but firm. The three biggest pieces of advice though would be this:

1. Keep your faith in God even when you get mad at him.
2. Don't be afraid to ask for help but also understand that most will never understand where you are and most of the friends you had will change to new ones. Help each other.
3. Never stop fighting for your children, even if you are the only warrior facing Goliath.

Sorry for the word in here but I had to share, speaking of fighting for our kids. 
I apologized to a nurse last night as I headed out of the ER for being grouchy and inpatient about getting my son looked at. (He's fine by the way other then fever but that will be gone soon too.) I had to keep being persistent about getting my son seen, even after being in the waiting room six hours before getting anywhere beyond triage. It was a busy night but still... The nurse knowing at least some of our story with the children said, "You are totally fine. I have worked here eight years and know an asshole when I see one and you are not an asshole. I don't see a bone in your body that would act like one, just a concerned parent who has seen a lot." My response? "*chuckle* I'll remember your words the next time I have to fire a doctor from seeing my kids." He just laughed and we went our separate ways.

After a night of maybe four hours of sleep if lucky, I'm going to call this post good and I'll see you on the next one!

Cheers!
~ Special Momma ~