I suppose it could’ve been worse.
Over the years, I’ve told myself this when thinking back to July 20, 2007.
Everything about my third pregnancy was normal, right down to a good strong heartbeat, a perfect ultrasound that showed 10 fingers and ten toes, and a baby that measured exactly as it should each week. Even as the first signs of labor came, there was never any indication that my second daughter would be anything less than perfect.
But things quickly unraveled. Shortly after arriving at the hospital, my midwife, Lucie, told me the baby’s heart rate was too high and because of that, they were moving me up to a regular Labor and Delivery room, not the Alternative Birthing Center like I had planned. I was upset, but I knew she knew what was best for us, so I went without any fight. Once we got settled into the L&D room, Lucie broke my water and immediately noticed meconium in the fluid. She told Corey, my husband, he wasn’t going to get to cut the cord and warned us about the team of pediatricians that would be standing by ready to take her as soon as she came out. I knew meconium (the baby’s first bowel movement) usually isn’t a big deal, so I wasn’t really worried about it.
The second Cadence was born, just as Lucie said there would be, the doctors rushed in and worked on her for what felt like an hour, but it was probably more like five minutes. I didn’t hear her crying, but I knew enough to know that was okay; I needn’t be too concerned. When after a few minutes she was barely squeaking, they told me they were bringing her to the NICU and I could expect her to be there my entire stay. She had inhaled a considerable amount of meconium and needed extensive care. They brought her over to me for a quick hello and after holding her for a few seconds, she was gone. All I remembered about her was her eyes. They were open and gorgeous!
I knew she was in good hands. I tried not to get upset and I told myself she was going to be fine. No matter what she was going through, they had everything they needed to care for her and help her with her breathing until she was well enough to do it on her own. So as I lay in the bed with empty arms, I was calm and relaxed, clearly a mother on her third child. Corey was pacing around the room and Lucie was collecting the cord blood we had chosen to bank when she held up the umbilical cord and announced, “Here’s our culprit.”
And there, in the center of my daughter’s lifeline for the previous nine months, was a true knot.
Lucie said it was likely that at some point Cady had tugged at the cord, momentarily cutting off her oxygen and causing her to gasp and inhale the meconium. I still remember my mouth opening slightly as I just stared at it, thinking how lucky we were the knot didn’t kill her. I never for one second thought that it had given her brain damage.
But, as the coming days would tell, it had. After the NICU nurses raised some questions about Cady’s behavior, they began testing. They said it could just be she was worn out from fighting so hard to breathe (she was on oxygen for eleven days), but her unresponsiveness and lack of certain reflexes concerned NICU staff. Soon, an MRI confirmed what a CAT scan had suspected. Damage to the thalamus. No prognosis available. Only time would tell the life my daughter would lead. If I had a dollar for every time I was told about the “elasticity of the newborn brain” and its “ability to heal itself” I’d have had enough to cover all the cafeteria food I was eating.
Looking back, the next six weeks were a blur. I was overtired, stressed out and extremely nervous, anxious, angry, depressed… all of the above. There was even some guilt: “What if my body had just delivered sooner?” “Did the exercises I had hoped would induce labor cause her to tug at the cord?” “Why couldn’t I have just left well enough alone and stopped at two children?” I had a 3-year-old daughter and another baby at home (my son had turned 1 only 12 days after Cady was born – clearly still a baby in my eyes) and there were days when I wondered how I would ever get through the ordeal.
And if all that weren’t enough, when she was exactly 4 weeks old we were hit with more bad news. Cady, who at this point was only still in the NICU because of problems feeding, was silently aspirating her formula. Had we not caught it, another bout of pneumonia was inevitable. Surgery was scheduled and at just 4 weeks and 5 days old, my child was put under general anesthesia yet again as a feeding tube was placed in her abdomen. She went home a week later.
Her first weeks home were close to unbearable. She hated the darkness and silence that is the night. After nearly six weeks of constant lights, beeping sounds and full-on alarms, Cadence had literally not had a moment’s peace since she was born. I spent many nights begging her to sleep and one night, with just the streetlight shining into the room and across her face, I wondered what our life would be like. I sobbed to her, asking her if she thought I could handle being her mother. Could I handle the stress of caring for a disabled child? Would her problems be physical, mental, both? How was I going to do this? Did I have it in me?
And then, and I swear this is the truth, Cady cracked her first smile. It wasn’t a great big one, but more of a little smirk that says, “Hey you,” followed by a knowing wink. I brought her to my neck, held her tightly and as I cried into her blanket sleeper, I felt as if she understood my sorrow and wanted to give me something, anything to hold on to. Time truly would tell all, but in the meantime, I would, and knew I could, do all I had to for my daughter to ensure the best possible head start of her challenging life.
At 18 months, she was officially diagnosed with spastic quadriplegic cerebral palsy and today, at 7 years old, Cady is doesn’t walk, talk or even eat, has very limited use of her hands and has a seizure disorder. But she has more sass and resolve than anyone I know. She talks with her eyes and when she smiles at you, she hugs your soul. Cady makes friends wherever she goes and often people stop and say, “Hi Cady,” as I’m left wondering who that person was. The most popular girl in school, the children love watching her take off down the halls in her walker, head high, determined to join her classmates for gym, library or music.
Is it easy? Absolutely not. Do I have days where I feel sorry for her, daydreaming of the child she could’ve been? An astounding yes. And do I get angry sometimes, wishing things were different, easy… normal? Of course. I wouldn’t be human if I didn’t. But then I look at her and she smiles and I know she is here for a reason. It isn’t often in life when the child is the teacher, but I’ve no doubt she’s here to guide me through this crazy life, teach me patience and remind me God always has a bigger plan.
Now, when I think back to July 20, 2007, I know it could have been worse. The knot could have killed Cady and we would never have been blessed with the joy of her smile, the twinkle in her eyes and her hearty and contagious laugh. The pride we felt when she finally rolled over and began using her hands to catch herself from falling is something we would never have experienced.
Hearing the word “perfect” used to describe her was amazing, even if it was only to express how well her hips were forming, and watching her pull herself into a sitting position and pick up her head to smile at you as if to say, “Ma! Look what I can do!” is enough to make it all worthwhile.
Having a child with a disability means many things, but most of all it means fighting harder for the simple things, feeling prouder over every accomplishment and never taking a single laugh, moment of eye contact or feeling of understanding for granted.
Yes, it most definitely could have been much worse.
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