My husband made me cry last week. The kind of crying that makes your lip quiver and your heart hurt. The kind of crying that leaves you shaken.

In a totally good way.

We were enjoying a Pearl Jam concert when we heard the first few notes of the song, “Given to Fly”. I threw my fist into the air, as any good rocker would, and I smiled because it’s one of my favorites. Then my husband leaned into my back, laid his hands on my shoulders and put his mouth next to my ear before saying, “This song reminds me of our son.”

The tears were immediate.

See, if you haven’t known my boy from the day he was born, you don’t know how far he has come. People who meet him now don’t know that he barely made it through his first year. People who meet him now don’t know what a fighter he truly is.

They don’t know that when he makes me laugh, it is a hearty laugh because I never knew if I would hear him speak. Or, when he completes his math homework that I want to burst with pride because I didn’t know if he would ever be able to hold a pencil, let alone comprehend the problems.

They can’t look inside his chest and see his mangled heart or his stomach which often can’t hold its contents. They can’t look into his eyes and know that he could rarely open his right eye until it was repaired surgically. They see a little kid, but I see an amazing human being who is living proof that you can’t judge a book by its cover.

A wave came crashing like a fist to the jaw
Delivered him wings, “Hey, look at me now”
Arms wide open with the sea as his floor
Oh, power, oh
He’s…flying
Whole…

He floated back down ’cause he wanted to share
His key to the locks on the chains he saw everywhere
But first he was stripped and then he was stabbed
…well…he still stands

And sometimes is seen a strange spot in the sky
A human being that was given to fly

Today my son turns eight years old. Happy birthday, child. Fly high.

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Last week I went through a rough spot with my son at school. The details of the situation aren’t important. What is important is that it left me devastated.

The details don’t matter because, from the day my son was born nearly eight years ago, there have been constant situations. His life has been one, big struggle and therefore, my life with him has been as well.

In the midst of last week’s ordeal, I was shooting off an e-mail and made a statement about how having a child like my son is “such a challenge.” The person to whom the e-mail was sent, responded by saying that “all parents feel challenged” and that “I am not alone.”

I understand she was reaching out. I understand she was trying to make me feel better. Misery loves company, after all. The problem is that I do feel alone.

My son is different. He is unlike any other child I have ever known. I have had experiences as a parent that most people never will.

All parents know what it’s like to get up with a baby in the middle of the night, but how many moms had to feed their baby every three hours, round the clock for thirteen months? And, it took an hour and a half at a time just to feed him two ounces of milk.

How many parents have handed off their kid to a surgeon? Nine times.

Most kids don’t obsess over the number 10, want to rub people’s arms or have to take medicine every day of their life. Most parents don’t have to worry that their child will have a stroke, or watch him to make sure he doesn’t look more blue than usual.

My son can’t hear well, can’t speak well, chokes easily, vomits easily…and all of this? Is after he has come leaps and bounds thanks to countless therapy sessions. The occupational, physical and speech therapy sessions that most parents never have to attend.

I find myself constantly clenching my teeth, my body tense, my mind anxious.

My son is not a typical child and that’s okay. With the exception of taking away the physical pain he has suffered, I wouldn’t change a thing.

Watching him overcome so much, seeing him grow and become someone we never thought possible has been amazing. It is a journey like no other and, though the road has been bumpy, it has taken me to beautiful places that I didn’t even know existed.

The events of last week left me upset, not because I wanted pity, but because I wanted understanding and respect for my child. I don’t want his struggles to be dismissed, because they are not average. They’re monumental.

As for me? Well, every parent faces challenges, but I am guessing that they don’t dredge up the memories of the hundreds of challenges which came before. That is where I was last week; standing alone, in a place where images of our past were swirling around my head. Visions that left me sick and dizzy and ready to circle the wagons around my boy.

My son is not every child and I am not every parent. There are times when we can stand side-by-side with our peers, but there are just as many times that there is no comparing us whatsoever.

There are times when we are alone. And sometimes, being alone gets awfully lonely.

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My son was having trouble falling asleep last night. His room was hot, as it usually is, after having the sun shine through his window most of the day, so I told him to climb into my bed where there was enough of a cross-breeze to keep him comfortable.

I lied next to him and watched him drift off. After a few moments of sleeping peacefully, he experienced that sensation of falling where you gasp and your entire body jumps. Then he settled into his pillow and dozed off for the night.

That sensation is called a hypnic jerk and my son used to experience them a lot when he was young, especially when he was sick. And, he was sick all the time.

In the mere seconds it took for his body to jolt, my mind traveled from watching a typical kid going to sleep, to the very ill child I used to know. His hypnic jerk not only shook his body, but shook my memory as well.

I thought of the heart monitor that went off constantly and the sound of him gasping for breath as his nasal passages filled with the contents of his stomach. I remembered watching him play with toys in a hospital crib, three hour long appointments with neonatologists and geneticists and him crying in pain because we just couldn’t get his meds right.

I thought of him weighing 13 pounds on his first birthday and how his GI doctor was this close to putting him back on tube feeds because of it. I remembered therapy sessions where he didn’t do anything but lie there because he simply didn’t have the energy to do anything else.

I thought of his heart diagnosis, his surgeries, and his struggles with eating, crawling, walking and talking.

I remembered everything.

I was reminded that all of those things are deep inside the boy I know now. He is tough, yet parts of his body are still weak. He is strong, but he is very small. He is smart, but still talks like a three year old. He is healthy, for now.

Although his struggles are much easier than they once were, he still faces an uphill battle each and every day.

I needed to be reminded of that; to know that he tries his best and has to work twice as hard as an average kid. I have been trying so hard to make him typical that I have forgotten that he, quite simply, isn’t.

My son is different. He is one of a kind and I wouldn’t want him any other way, even though I forget that sometimes. He is a challenge, but that makes his accomplishments all the more special. I needed to be reminded of how far he has come.

Thanks for the jolt, buddy.

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This is the day that I often refer to as my daughter’s adjusted birthday. Today was her due date. Unfortunately, she decided to arrive in December.

She was in the hospital for 35 days while she grew from just over two pounds to just over four. Believe it or not, I look back at her days in the NICU as a beautiful time. She had amazing care and the nurses encouraged our bonding. She rested, she ate, she snuggled against my bare chest and we became a family.

Best of all, we had primary care nurses, also known as having, “continuity of care”. That means that we had the same two or three nurses all the time. The hospital ensured that there would be a solid relationship built between the caregivers and the patients. Those nurses knew us, they knew our daughter and they became part of our family.

When my son was born seven weeks early, he was too sick to stay in the NICU at the hospital where he was delivered. He was immediately swept away, across town, to Children’s Hospital…just in case he needed emergency heart surgery.

In that NICU, they had recently done away with the use of primary care nurses. Apparently, the bonding that was going on between the patients and the nurses became too hard if the sick, little babies would pass away. I can understand that. I have watched a baby die. It is unbearably painful.

But, there is stark contrast between the memories of my daughter’s infancy and my son’s. I couldn’t help but feel that there were complete strangers caring for him. Because there were. Every single time I walked in, there was someone new. They didn’t know me, they didn’t know my baby, they didn’t build any kind of relationship with him whatsoever.

There was no bonding. We were not a family.

And I hated it.

During that painful time, I could have never anticipated where we would be nearly eight years later. My tiny daughter has grown into a typical eleven year old and my medically fragile son has come farther that we ever thought possible.

Because, in addition to a lot of work at home and in therapy sessions, there has been something even more meaningful to their development.

There has been continuity of care.

My children attend a very small school. There is one class per grade and every teacher knows every student. The vast majority of parents know each other and I would venture to say that just about everyone who enters that building knows my son.

I am working at the school so that I can be there for my boy if he should need me, but I am certainly not the only one looking after him. Day in and day out, there are many parents, teachers, aides and even students, who watch out for him as well. That stability and the formation of these strong relationships have helped my kids excel.

There are more bonds than I can count. We are a family.

And I love it.

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