2014, Thanks for the Memories

I seldom let myself forget the changes that 2013 brought to my life. They say time heals all but sometimes that just isn’t true. Sometimes the cut is too deep to ever heal properly so instead it still pops back open from time to time, always bringing back that same sharp initial pain.

2014 brought the chance to smooth over the wounds, and in many cases, it did. We brought our miracle home with us. He defied the odds and overcame his dependence on oxygen and ten medications. We moved into our first home together. Things are changing, and for the better. Life will never be the same though, for any of us. And 2014 gave us the chance.

2014 saw my firstborn child for all intents and purposes BECOME a big sister. She didn’t hold him in her arms and look into those deep blue eyes until so many months after his birth. And when she did, I saw in her eyes the terror at the beeping, machine dependent little creature in her arms. But she took on the challenge and has become the best big sister a boy could ask for. Resilient and conscientious,  she’s rolled with the punches and will now change his clothes and on rare occasions, a diaper. She’s changed schools this year and thrived in her new setting. She so often proves to me that my fears for her are unfounded. She’s fine. And I know she will be because she’s my daughter. It was just the two of us for so long that I know that if nothing else she’s tough and self sufficient. Strong. Determined. She’s her brothers champion. I’ve overheard her describing to her friends what a micro preemie is and how special her brother is because of it. I know that if she one day felt called to be a NICU nurse she’d be the best there ever was.

2014 saw Avery released from the NICU. In 5 short weeks we will celebrate his due date with an un- 1st birthday party and in 6 weeks, the one year anniversary of his release. He’s gone from not quite 3 pounds to 15. From dependent on oxygen to machinery free with crystal clear lungs that bear little evidence of his lung disease unless he’s ill. He’s developed a personality all his own but I can see us in him. My laugh and Arick’s smile.

In the NICU I prayed over him constantly. When my faith wavered I’d attempt to bargain with God. Please, heal my son. If he continues to fight and grow stronger, I’ll know you mean for him to live. I’ll know his life has purpose, that he’s destined for great things. I know now that what God laid on my heart so many months ago is true. He IS a great thing. And this, he’ll continue to be. Avery is a blank canvas, an unwritten novel. One day that canvas will be vibrant. The pages of his novel will be filled with words. The greatest story ever told. That’s what Avery is.

We all have something very special in Arick. 2014 saw me fall deeper in love with him. I speak often of how he was there every day with Avery. But he was so much more than there. When I was scared and anxious he calmed me as only he can. When I feared caring for our one pound baby he did so first, showing me how and easing my fear. He changed Avery’s first diaper, fed him the first bottle. Bathed him first. Confidently did all of the things I was too scared to until I saw him do it. Arick learned it all. Soaked it in.

When we lost our baby in September he held me all night before we got up and went to the hospital to be induced. As my labor started and my contractions grew stronger he never left my side. I don’t think he went to the restroom all night except to lead me there. He held my hand through each contraction. When the time came to push he had my hand in his and his head buried in my shoulder. When I woke up hours later in the recovery room following emergency surgery it was his eyes I looked into.

2014 taught Arick the acute pain caused by the loss of a part of yourself. 2013 could have easily done the same but it didn’t. For that, as awful a year it was, I have to thank 2013 for sparing us the heartache.

I can’t imagine a life without Arick as my partner. Without our silly fights and him making me smile no matter how mad I am. Him saying exactly what I’m thinking before I think it. They say your spouse is your better half. In our case, it’s true.

With that, I welcome 2015 with open arms. I willingly accept that changes that it will bring. Chances to heal my cuts. Our cuts. I want to sit here a year from now amazed at what has transpired in 12 months. I hope to grow my family stronger and happier. Each year is a blank slate. A chance to change your fate. Heal yourself. Be happier. A new year is a new lesson. And I’m ready for the next one.



Yesterday we heard the words that we knew were coming. Knowing didn’t make them easier to bear or less painful. I may have even sighed in relief at hearing them because I felt like someone finally acknowledged the elephant in the room. Either way, I can tell you without question that I knew. When Avery was 9 months old, I looked at Arick and said to him: “I think Avery has cerebral palsy.”

When I was in the hospital those three days trying to keep Avery in I did so much Googling that when he was born, I already knew there were groups on Facebook for parents of preemies, micropreemies, babies with feeding issues and many of the disabilities associated with prematurity. When he was born so early, and so small, I desperately wanted to connect with someone who KNEW how we felt. I didn’t want an “Oh, I understand how hard this is- my baby was in the hospital for a week after he was born!” I wanted “MY baby was a 25 weeker. She spent months in the NICU. I won’t lie, it was a nightmare. But here she is today. She struggles with -, – and -.”

As the months have passed, I’ve seen many families face exactly what we are now. I mentally cataloged every symptom, every warning sign. I was preparing myself for the worst, even then. I fed my fear…the demon inside me I knew only wanted to make me suffer. One day that fear demon was full and I knew. That’s when I told Arick.

At 6 months adjusted Avery had yet to completely roll and his left hand was always closed. I came to realize that he just didn’t use it. Ever. His left toes were clenched, too. If you tried to lift that arm, you’d be met with resistance an infant shouldn’t be able to provide. He didn’t pass things between his hands and if you sat him up he flopped like a wet noodle. I called Early Childhood Intervention and scheduled an evaluation.

I feel like my eyes were opened and at the same time my fears alleviated the day I met his physical therapist. I’d ask her then if she thought he had CP. “Let’s not go there yet, Momma.” But soon, we’d have to. For the last two months she’s fought and advocated for our son as if he were her own. With her guidance, I broached the subject with his doctors.

And today we know. Avery has cerebral palsy. Soon, we’ll see the doctor who will tell us exactly what type and give us a prognosis for him.

What does this mean for our son? It means he may need the help of medications, muscles relaxers and Botox, braces and years of therapy to do the things we so often take for granted. It means that he was left with lasting, permanent damage from being born far before his tiny body was ready. It means that our fears have come true.

If you’ve met our son, you know. There’s nothing like him. He’s beautiful. Brilliant. Strong. Determined. Awful. Just the worst baby ever. He’ll scare the life out of you and then smile wide, showing off that little tooth or before it, nothing more than tighly clenched gums. Smile from ear to ear, his cheeks squishing up and forcing his eyes closed. He’s amazing.

Because I know these things I know that CP is just a medical term on a chart. It isn’t who Avery Elijah Hartman is. I know that he’ll fight with the determination that only a formerly 19 ounce baby can. That he will do everything he’s meant to, even if it takes him longer and he has to work harder. But that he can do. We’ve seen it. And because prognosis=guesses=crap.

There’s a peace in knowing but I can’t lie. I’m deep in the stages of grief right now. Which one, I couldn’t tell you. I know for certain I haven’t reached acceptance. As his Mom, this will take time for me. But like him, I’ll get there in my own time. I don’t fear the future. It’s the unknown that keeps me up at night.

He’s sick right now, and it is impossible to put into words how it hurts to see him suffer after he suffered for so long. It brings back memories. Painful ones that we won’t forget. Memories that we wouldn’t want to forget. Those memories are how we know that even in the face of a diagnosis of cerebral palsy, Avery is going to continue to be a rock star in everything that he CAN do.

Because God gave us a miracle the day he gave us this little boy.