“Que Sera, Sera; Whatever will be, will be; The future’s not ours to see; Que Sera, Sera.”
Ever since I was a little girl, all I ever wanted was to be a Mommy. As an only child, I loved, played, and cared for countless baby dolls, imagining what it would be like when I grew up and had real babies of my own. I wanted six children. Six was my favorite number (still is). This was my dream – to be a Mommy.
Fast forward to my early twenties: I met my Prince Charming, fell in love, and rode off into the sunset of matrimonial bliss. We waited a year or so before trying to conceive. It was difficult as I’d already been waiting my whole life, but we wanted to devote some time to just each other as a married couple before embarking on the amazing journey ahead of parenting. It took about another year and a half and a bit of medical intervention to become pregnant with our first child.
Like so many expectant parents, we had so many hopes and dreams and were just delirious with joy and excitement. She came a month and a half early after my water broke quite unexpectedly. Having prepared for a natural birth, our first curve ball came when we were told she would have to be delivered by c-section. She also couldn’t come home with us right away. Due to some “common” preemie issues, she had to stay in the hospital for what ended up being a week and two days (yes, exactly). They might as well have ripped my heart out of my chest.
What mother plans to go home without her baby? I could barely bring myself to leave the hospital at all during that time. She spent most of her time in an incubator and initially had to be tube fed. Determined to breastfeed, I pumped my milk day and night, feeding my infant daughter through her tube. It took another week after we got home to get her onto the breast. From there it was pure bliss all the way. She and I spent our days doing whatever we wanted. Despite the tumultuous beginning, it was the loveliest, easiest, most blissful time of my life.
Less than a year and a half later, we were surprised by an unplanned pregnancy. I had finally gotten my pre-pregnancy body back, my daughter was becoming more independent and learning new things, and I had wanted more time for just us. No longer was I planning to have the six children imagined in my youth. I loved nothing more than having fulfilled my childhood dream of becoming a Mom. My daughter was everything to me. One more child, maybe, but only when I was ready. I was not ready to give up the one-on-one time with my girl.
I wasn’t really happy about it for a while until I felt the first flutter of life. That is when it became very real, as real as my firstborn out of the womb. Then we saw her on the ultrasound, our beautiful second daughter, doing bicycling motions with her legs. I smiled, I cried, and I couldn’t wait for her to make her entrance into our life. I was five months along when the ultrasound was done. Two short weeks later I developed a fever one morning. By the late afternoon, my water had broken and we lost our precious daughter. I had acquired some kind of infection that caused my water to break prematurely and miscarry.
This was such a profound life-changing and tragic loss. I would wish it on no one, friend or enemy alike. I wept more tears than I ever knew I had. I started this grieving process that eases over time, but never really fully goes away (I am crying as I write this). I reached out to other families who had experienced the same or similar type of loss in the hopes of helping them heal too. I got a tattoo of an angel looking over my shoulder with the first initial of her name etched in the wing.
After some time, we were assured it was fine to try again. My husband and I decided to try one more time for another child. If my body rejected him/her in any way or anything happened to this child, we would hang up our hats and pour all of our love and parenting onto our living daughter.
We had no difficulty conceiving our son. It happened rather quickly. I was cautiously optimistic and a nervous wreck the entire time. Because of my history, I was now considered a high-risk patient and was followed very closely. I did whatever my doctors told me to do. I went in for as many appointments as they wanted and took as many tests as they ordered. When I made it to twenty-four weeks, I was put on full bed rest with home monitoring. This was a stress on our entire family, but I made it five more weeks until my water broke and I went to the hospital. Luckily, I didn’t go into labor right away and remained in my hospital bed for another week with my water broken, antibiotics, and other meds pumped through my IV’s with my monitor belt strapped firmly around my middle.
My son was born two and a half months early and spent a month in the NICU. Anyone who has had children knows about the APGAR scoring test. My son’s APGAR tests were 1 and 8. ONE and eight! He almost didn’t make it. The cord had been wrapped around his neck twice and he lost oxygen somewhere along the birthing process. He was put on oxygen for several hours after birth, then room air, then into the incubator to warm up. He also had a large bruise above his left eye and forehead which changed to a pink then red color while in the NICU. We thought nothing of that and assumed it was just a bruise from the birthing process or birthmark. Either way, we just wanted him to breathe and thrive and come home with us. I resumed pumping day and night as well as having him take to the breast which he did almost immediately. My husband and I spent hours providing kangaroo care, kissing him, humming to him, and rocking with him. After a month, we brought him home.
This huge red spot on his left eyelid and forehead grew larger and meaner looking. Our breath was taken away again when we visited the plastic surgeon’s office for the first time and were told of the severity of this growth. Not just a birthmark, this was a hemangioma – a benign vascular malformation that, due to the location and size, was threatening to overtake his eye which would swell it shut and lead to vision loss. If the eyes aren’t open and looking at the world around them from birth, the brain figures that they’re not needed and shuts off communication to them. We visited several doctors, specialists, and surgeons. He was put on high dose steroids for an extended period of time, had multiple laser treatments, as well as invasive surgery which led to a terrible staph infection. It was a hell of a first year, but we got through it and we were hopeful about the future. We had been through the worst with this thing on his eye and had come out victorious. Now we could move on with our lives and “get back to normal.”
We were told that the steroid therapy would temporarily stunt our son’s growth and halt his development, so we proactively sought out therapeutic services for him so he wouldn’t be as far behind developmentally after being completely weaned off the steroids. We figured he would eventually catch up to his peers because we were told these effects were not permanent. We just wanted to help him along. We had no idea that there was more going on with him than that. After another six to eight months, he still wasn’t sitting up. He wasn’t crawling. He wasn’t even holding his head up and couldn’t hold his bottle. There would be no going back to “normal” as we knew before.
My son has cerebral palsy, severe mental impairment, global developmental delays, spastic dyplegia, and epilepsy. We think he is also somewhere on the autism spectrum, but at 8 years old, this is the least of our concerns. Keeping him alive, comfortable, and happy tops our list of daily goals. He has the mind of a baby and always will. He doesn’t walk or talk, and he is still in diapers. He needs full assistance with all of his ADLs [Activities of Daily Living] and has respite caregivers who come into our home to help us. He does eat and loves his food. He has “chewelery” to keep him from biting his arm off (or ours)! He does let us know what he wants or doesn’t want with certain sounds/motions and can be very particular. He loves watching videos with certain childhood characters like Elmo from Sesame Street, Veggie Tales, and The Wiggles as well as listening to all different types of music. He likes to dance in his chair and does so with such pure joy and vigor. We should all only hope to be half as happy with such simple things in life. He loves to be tickled, horsed around with, and smothered with kisses (well, at least I love to smother him with kisses) He has taught us more about patience, hope, and unconditional love than anyone or anything else in this world.
All children dream about something. I dreamt about becoming a Mommy and had a certain portrait painted in my head of what it would look like, but as the song goes, “The future’s not ours to see…” Instead it unfolds little by little – some we hope and plan for, but most we don’t.
“Whatever will be, will be…” Whatever we make of it is what it will be. We have a choice to allow what we didn’t plan for to drag us down to defeat and destroy us, or allow it to lift us up to become stronger, wiser, more thankful, more empathetic, and more than we ever thought we could be in every way.
By: Allyson V.