Sometimes in our lives, there are moments that shape and define us. Other times, it is a specific person who just changes our perspective on everything we ever thought we knew.
For many of us, this whole new world is opened before our eyes, when we become a Mother for the first time. I was no different…well to begin with anyway.
I was born to be a mother. It was all I ever dreamed to be. I babysat every little cherub I could.
I pursued a degree in Early Childhood Education and began teaching at a young age. I knew one day it would be my turn to have my own and while I waited for that time to come, I enjoyed everyone else’s kiddos!
I just assumed that I would be able to get pregnant with no issues and that was my first curve ball. Two years after fertility treatments, I was still childless and felt so worthless that I couldn’t bring a baby into the world. It was the only thing I wanted my whole life and I couldn’t make it happen. We were trying in between my husband’s deployments and at the 2 and half year point, finally-we were expecting!! I couldn’t stop crying when I found out and in that moment, my whole life shifted and became about her.
However, rather than being able to enjoy the experience I had so long waited for; I developed Hyperemesis gravidarum. I spent 2/3 of the pregnancy violently ill and lost 30 lbs. One complication after another kept arising, all while my active duty Army husband was away training. I had preterm labor issues and was placed on bed rest. I remember lying there and in all my suffering, just telling myself over and over how worth it this would be when it was over and that everything would be fine. It was a challenging time, but little did I know it was just the beginning of the challenges I would face!
One freezing January afternoon, my amazing daughter came into this world! I was just so ready to meet her and have the hard part be over and let things finally be normal and experience what I had built up motherhood to be my whole life.
I was handed this tiny little person and couldn’t stop crying at how small she was. They took her away to clean her up, but it quickly became apparent that something was wrong. The nurse wouldn’t stop suctioning her out and I wondered if she was choking. No one was telling me what was going on. I kept asking the midwife “Where’s my baby? What’s wrong with my baby?”
It was not supposed to take this long. I saw a doctor come in and immediately go over to my child. I was now panicked.
After what seemed like an eternity, the doctor came over to me and explained that she was born with a cleft palate and would need surgery. I had never heard of this, but when they brought her over; I saw a big hole in the roof of her mouth and going down towards the back of her throat. I saw no end to it. They started bringing me special needs bottles and pamphlets and telling me how to care for her, as I sat there in shock.
I remember the first night, laying there thinking of all the mother’s all over that hospital, nursing and cuddling with their babies. Meanwhile I was sitting there, suctioning her out as she choked on every 1/10th of an ounce I gave her and being terrified. I cried harder than I had in a long time those first weeks.
There was no time to think or breathe or process anything, because less than a week after she was born; we were sent to The Children’s Hospital in Denver for a full day of evaluations, by every specialist you can imagine. I walked in the lobby and thought, “This can’t be happening. Not to my child.” Granted I am sure that is how all parents feel, when their child develops a life altering illness or gets a scary diagnosis and I’m sure it didn’t help that I was less than a week postpartum with especially raging hormones! As I got into the elevator to a floor of the hospital that would become very familiar to me, I started sobbing and hyperventilating, as my husband tried to calm me down. The day was a blur. All I knew was she was 6 days old and I was trying to pick her plastic surgeon.
I tried to adjust to this massive, unexpected new life in the weeks that followed. I felt like I was at capacity of what I could handle, but there were still bigger hills to climb.
A fever when she was a baby led to a hospital stay, where it was discovered that she had severe sleep apnea and would stop breathing up to 10 seconds at a time and she was permanently put on oxygen at that point. For many of those first months of her life, I never slept. They told me if she ever even dosed off without oxygen, she could end up with serious brain damage or die. I lived in fear of that happening and was always shaking her awake. I felt like I was being robbed of every experience I had dreamed of. Rather than staring at my little angel sleeping peacefully, a feeling of panic would rise as she would fall asleep and I would run to get her oxygen or try to wake her up.
Through all this, she also had severe feeding issues and had to be on a liquid diet, failure to thrive, pneumonia, chronic lung disease, severe sleep issues, developmental delays, hearing loss, multiple ear tube surgery, severe reflux resulting in aspiration, just to name a few of her health challenges. You name it and it seemed to happen to us. It was some of the darkest times of my life, watching her struggle what seemed like every day.
I have always been a person of deep faith and this was the time in my life that I wrestled with it pretty intensely. There wasn’t a day that went by in her first year of life, that wasn’t filled with pain, sickness or terror. Yet there also wasn’t a day that I wasn’t reborn and refueled by this intense love and bond with her. There wasn’t a moment that I would stop fighting for her. I knew that if we could just get through this, she would grow to be one of the most extraordinary people the world had ever known.
When she was 10 months old, she finally got her cleft palate repair. Her Dad was in Afghanistan and I knew I had to be strong to do this without him. I remember going out into the waiting room after they took her back and trying to call my husband on a calling card and not getting through and just sitting alone with tears rolling down my face. It was the longest 4 hours of my life.
I finally got called into the recovery room. I heard mother’s everywhere crying and being escorted out, because they couldn’t bear to see their children be in such pain.
I knew I didn’t have anyone else to come in besides me, so I had to be tough. She needed me.
I walked in and saw her little face coated with blood and my heart shattered. Every time she’d whimper, they’d put more medication in her IV. I can only say that my faith gave me a peace I couldn’t understand. I gently picked her up and sat in a rocking chair with her and with all the chaos surrounding me, started softly singing “Jesus Loves Me” and I knew I wasn’t alone.
It was an uphill climb after that, but this was the finish line I told myself. If we could just recover from this, I could finally breathe and enjoy my life with her.
I wish I could tell you that she recovered just fine, but we continued to face so many obstacles and she was in a constant rotation of therapies to try to help her catch up on all her developmental delays, that we assumed were because of so much time being sick and in hospitals. There wasn’t any part of me that thought she wouldn’t get on track with her peers, once she got physically healthy.
However, as time passed, she didn’t “catch up.”
I read an article about early intervention and autism and immediately became concerned that my daughter had some of the warning signs. When I initially spoke to her developmental interventionist, she thought her positive qualities outweighed the warning signs, but it would be a wait and see game. But as months went on, we knew something was wrong. We could call her name 20 times and she wouldn’t turn at all. She wouldn’t talk. She wasn’t learning sign language, despite my constant efforts. She wouldn’t point and still wouldn’t eat solid food.
At this time, her therapist approached me and I said I would do an autism checklist online that day. Everything within me dreaded sitting down to that computer, but I knew I had to know if I was to help her.
As I checked off one thing after another, the tears started falling.
“No God, this can’t be real. Not this. It isn’t fair! Hasn’t she been through more than enough?” But it was real. On March 23rd 2012, I heard the words no parent wants to hear.
“Your daughter is autistic and has global developmental delay, an eating disorder and sleeping disturbance.”
How did I ever think motherhood would be easy, magical, and all around dreamy?
My mind started racing with questions. What would her future be like? Will she ever talk?
Will she ever call me Mama? Will her life always be this hard?
I let myself wallow in self-pity for about 24 hours and then I decided I would not give in.
I would fight for the best future she could possibly have. I would do everything I could to help her. I had to give all I was, to help her be all she could be.
That defining moment of my life was almost 6 years ago. Today, my daughter is almost 9. She is quite literally the best person I know. She went from no speech, to talking my head off all day long. She has the most beautiful smile you’ve ever seen and every time I see it, I know I would choose her and do this all again.
Thanks to early intervention, amazing therapists and a spirit that refused to be broken; she is completely developmentally on track with her peers and amazed everyone who ever worked with her. She never gave up. She never took no for an answer. She never stopped believing that she could change the world and I truly believe that she will! She already changed my life and many others in her short, but amazing time here.
If you asked me now if motherhood is every thing I thought it would be, I would say. “Absolutely not!” It has been nothing I anticipated, nothing I was prepared for; but it has been the love I always dreamed of. I know nothing else, like this love I have for her. Being her mom, has taught me more about the world I want to create and the beauty and resilience in life; than every experience I have had till now, put together!
*As first reported by Love What Matters