Once Upon a Time My Life Was Easy (Part One)

Beautiful LifeOnce upon a time, life was easy. Overall, it went as planned. I had my hurdles, but I cleared them and always landed on my feet. When I felt overwhelmed, my general optimism and faith carried me through.

Then while I was pregnant with our first child, my perfectly normal pregnancy took a turn. No one could figure out exactly why it was happening, but our baby girl’s head was no longer growing properly. For the remainder of my pregnancy (20 weeks), I had weekly appointments and tests. She was “healthy,” but something was obviously wrong. All we knew for certain was she had microcephaly, but the cause was unknown. When she was born, I was finally able to hold my daughter for the first time. We had worried about this little girl for months and months and now, this perfectly imperfect angel was in my arms. My heart was so full of love and gratitude. To me, she was perfect…she just had a small head. All my worries melted away and I lived in the moment. It was magical.

Beautiful Life

For months before she was born, I had prayed to know what to do, how to feel. I prayed for a miracle. I had received an answer to my prayer…she would be ok. What that meant exactly, I didn’t know. But I had total faith in that answer. “She would be OK” meant she would, over time, be made whole. Her head would be “normal.” Any problems she had at birth would vanish. That would be our miracle. This was a major bump in the road, but one we’d be grateful for in time. At least that was my interpretation.

Six months later, I was a different person. The hurdles were coming too quickly, one on top of the other, and I couldn’t regain my footing. I crashed.

Beautiful Life

Samantha’s early life resume looked something like this:

  • Does not sleep
  • Unable to relax her muscles due to cerebral palsy
  • Cries incessantly
  • Doesn’t gain weight
  • Causes excessive concern to doctors
  • Begins physical therapy
  • Requires regular doctor appointments
  • Receives an initial diagnosis of Primary Autosomal Microcephaly…a rare genetic condition
  • Begins occupational therapy
  • Convinces geneticist that her parents should not have any more biological children (due to high risk of reoccurrence)
  • Has seizures

The first seizure occurred in the middle of the night. I was on the couch feeding her. We had both fallen asleep and I woke up to her leg kicking me softly but rhythmically. I was uneasy about it, but it stopped fairly quickly so we both fell back asleep. About 30 minutes later, I woke up to the same rhythmic kicking. It quickly intensified until her entire body began to convulse. The seizures continued to come and they were out of control. We couldn’t find the right medication(s) to help her. Her small body was completely out of her control and it broke my heart. At her worst, she’d have upward of 17 seizures a day. It was horrible.

Beautiful Life

I had always heard and believed the faithful phrase, “God never gives you more than you can handle.” I stopped believing that. I didn’t stop believing in God, but I was now uncertain about my relationship with Him. Certainly He did NOT know me as well as I had thought. I couldn’t handle this. This was too much. Didn’t I get an answer to my prayer? Or did I make that answer up myself? Is Samantha supposed to be OK, or not? My beautiful daughter was hurting and no matter how much we prayed or tried to plead for her, nothing changed. It was only getting worse. I felt cheated and so hurt, thrown aside. I didn’t understand why this was all happening and to such an innocent beautiful little girl. Forget about me, it wasn’t fair to her. I began to accept that this was the way it was going to be and that we had a long road ahead…a lifetime. I loved my little family and I was grateful for them, yet I felt like I was slowly drowning.

Real Imprints

Then one day I realized, I wasn’t struggling, my faith was struggling. In that moment I was able to separate myself from my faith, and for some reason something clicked. I saw things clearly. The light came on in my life again. The truth is, overall I was happy. And actually, so was Samantha. My husband and I were still very much in love and had become even better friends through all this. I was hopelessly in love with my daughter. With all her imperfections, I truly looked at her as if she were a perfect heavenly angel. She was, and still is. She was bringing me so much true joy. Things were difficult, but I loved being a mother. I loved being her mother. I had many good acquaintances and a few great friends who mourned with me, laughed with me, and brought comfort just by being there with me. We were recipients of some of the most charitable anonymous service. We were also blessed to have my brothers-in-law live nearby during the time, and they frequently would stop by and help. They brought me great relief. I, myself, was fine…in fact, kind of great all things considered. I just needed to amp up my faith.

Joy reentered my life. My optimism was sincere again. I had prayed for a miracle during my pregnancy, and I was discovering that I was living with it. Samantha was my miracle. It was going to be OK because this is how it was meant to be. There was a greater plan laid out than I could comprehend in the beginning, but I was starting to see that the miracle we got, and would continually receive, would not be Samantha’s physical healing, it would be our own spiritual evolution and growth. There is no one I know who is more trusting than she is. No one more accepting and loving. No one more forgiving. No one more cheerful. No one more pure or full of light. She isn’t just our daughter, she is our teacher. She is the miracle.

Beautiful Life

Her life still has its challenges. It’s full of medications and therapies. I’m happy to say that now, at age 8, her life seems to be mellowing out. She has a seizure a couple times a year, she sleeps much better, remains happiest when she is around people, and continues to increase in her abilities. Her life is full of pure love. When she was born, a doctor proclaimed Samantha’s life would be nothing more than problem after problem. (And with very limited vision, I suppose he was right.) Marcus, with his arm around both me and our newborn daughter, full of confidence and great foresight said, “Jenny, one day we will look back and say we wouldn’t have it any other way. It won’t be today, or tomorrow. But one day.” It’s been a journey. And there are definitely days that are still difficult. As she gets older, we face new hurdles and I sometimes feel sadness creep in…sadness for the loss of my dreams for her, sadness that life isn’t easier like it once was. But I can’t imagine my life without her. And I dare say that I wouldn’t have it any other way. I’d rather have Sammy like this than live my life without her, for she is molding me into the person I am meant to be.

Once upon a time my life was easy.

Now it’s beautiful.

Follow Jeannette’s journey at The Green Piece.

Story written by: Jeanette Green

This story was seen first on Real Imprints.