I was busy getting ready for the arrival of my baby. I was on my 35th week and the ultrasound revealed we were having a girl! I was ecstatic. I always wanted to have two children, first a boy and then a girl, and it looked like my ideal was finally going to become real. I remember it being a perfect and happy thought in my head.
I was driving by the strawberry fields in Central Valley in California, I was on my way to work when my phone rang. It was my OB/GYN. I parked on the side of the road to take the call. Why would he be calling me at 8 in the morning? It turned out that the ultrasound had revealed a hole in my baby’s heart and we needed a more sophisticated check up. He had to refer me to a specialist. From OB level care, I was going to be monitored by a Perinatologist. A Peri what? I remember that moment as being a very confusing thought in my head.
The Perinatologist navigated my belly with the sonogram, gave me a 3D picture of my daughter, and said that the heart issue might resolve itself but the baby seemed to have under developed structures in her brain and her corpus callosum was missing. I would rather that her heart was the issue, because with complications in my baby’s brain, what would become of her?
From that time on came more news of complications that sprung only after 35 weeks of pregnancy. What followed was a blurred flurry of more new doctors, series of appointments at specialized hospitals two hours away from where we lived – stress tests, an MRI scan, and more bad news. Baby showed growth retardation. Baby had cysts and fluid in her brain. Baby had cyst in her gall bladder too. The novelty of seeing her in 3D ultrasound and getting ultrasound pictures had worn off. My heart was devastated and my head kept screaming, My baby is not perfect!
In that same week a decision was made: she would be taken out via C-section to really get into the “heart” of the issue (pun intended). So what may have been an ordinary Wednesday for some was a strange day for us. My Isabella was born. I remember that the moment she was taken out of me she was not crying. They showed her to me all wrinkly and swaddled up in a striped receiving blanket, and immediately whisked her away to the NICU. She did not breathe on her own and I did not get to hold her until 3 days after I delivered. The news didn’t stop there though, “she has a cleft palate, her kidneys are underdeveloped too, and she can’t hear…” I overheard an intern comment, “she looked syndrome-y. Her eyes are far apart.” A part of me wanted to make a scene at the NICU and run over that intern with my wheelchair, “you better take that back!” I did get a better hold of myself. My head was in a fog, but I composed myself. Seeing ten fingers and ten toes on her was not enough because it lacked that emotion of excited anticipation for a new baby’s arrival. In my heart, I was looking for that love-at-first sight feeling, but all I felt was nothing and I was pretty damn good at faking it.
The day after Christmas we were able to bring her home, and three days later, the morning of my birthday, I received the phone call from the genetics clinic. My daughter has Wolf Hirschhorn Syndrome (WHS), where the P arm of the 4th chromosome didn’t grow the way it should. Happy birthday to me, happy birthday to me, wait, Wolf what?
My biggest fear has always been having a child with disabilities. I had made sure I wasn’t going to have one. I never even entertained the thought of actually having one. I ate healthy, I exercised, I diligently kept my prenatal visits and made sure I never skip my prenatal vitamins. Heck, I even tried not to stand near a microwave and foregone monthly visits to the nail salon because I did not want to be exposed to any radiation nor sniff those chemicals. I took the nuchal translucency test and it came back screen negative, and although it says on fine print, “a screen negative result does not guarantee that there are no birth defects” and that “Prenatal screening cannot detect 100% of these birth defects.” I thought What are the odds, right? Turns out the odds are 1 in 50,000, and I was THAT ONE. Wolf Hirschhorn Syndrome is a syndrome so rare that when I tell people what she has, they were like Wolf What? Nobody, including me – a person who works with children with disabilities – has encountered anyone with WHS. When I googled it for the first time, it was disheartening. Global Developmental Delays, seizures, might not walk or talk… my heart felt so heavy and so raw coming face to face with my biggest fear for it was now real, and it was sleeping in the crib.
All the dreams I had conjured before she was born suddenly disappeared. Instead of having conversations that last forever like we were the bestest of girlfriends and singing till our lungs pop out, my daughter and I will do speech therapy; instead of baking and crafts and cooking, we will be working with an Occupational Therapist; instead of Hula classes, we would have to pay for Physical Therapy; instead of fancy girly clothes, we would buy seizure medications; instead of shoes, orthotics; instead of doll houses and stuffed animals, seizure helmets, walkers and wheelchairs; instead of purses, overnight feeding bags and syringes; instead of road trips, doctor’s appointments and ER trips; and instead of being an ordinary family, we are now forever changed. Why cant we just be ordinary?
Now it is 2013 and three years have passed, but I have to say that those three years went by quick. We have had many surgeries (G tube placement, palate repair, 2 different sets of ear tubes were placed, 2 sedated ABRs, a tonsillectomy and adenoidectomy), countless doctor’s appointments, grand-mal seizures that led to trips to the ER and some hospital stays. But it’s all been good. But “how?” you ask. How is this all good?
Because life goes on, and eventually we came to understand what it really means to live it one day at a time. We learned to follow the beat and rhythm and sing along to the tune of that one-step-half-step-back-step-turn-around-duck-stand-up dance routine that is now our life. We have opened up our home and learned to trust and appreciate the work that people like therapists, doctors, nurses and specialists do; these caring and knowledgeable people who have one goal in mind, to help my daughter reach her potential and be the best that she can be. We are humbled by the experience of wanting help, of asking help and accepting help, because it will take a village to raise our child. We learn to pick our battles, as we learn to look the other way when people make rude remarks or stare. We begin to understand that there are people who will be open to learning about people with disabilities and that there are those who are ignorant, that there are people who want to understand, and that there are those who are just nosy. We were faced with people not knowing what to say, or who say too much, or who say nothing at all but what it means is so loud that it wraps you around like a big comforting embrace. We learn that while there are people who are insensitive, most people do mean well. We also learned that there is a fine line between hoping too much and desperation, between having goals and unrealistic expectations. We were faced with and have had to slay this green monster called envy. Envy, bitterness, grief, desperation, anxiety were among us, and eventually we learned to live with it, and eventually we also learned to kick them out, and yell at their faces every time they come knocking on our front door every once in a while. We went through this long painful metamorphic process until we got to shake hands with what everyone in the special needs community call “acceptance”. How did we know we were there? We just know, because we no longer convince ourselves otherwise when faced with what fate has served us on the plate. We accepted that all of this is okay, that we can do this. We are special parents. We are a special family.
In those three years we have met other parents with children who also have WHS; strangers we share similar stories with, and these strangers became mirrors of our own struggles, that they really understand how we’re feeling at a level that makes us feel a lot more closer to them than family. They and their children have also become part of our family that we feel each other’s pain, grieve for their losses, and celebrate with them their achievements. We have met older children with WHS and seen how the future isn’t as foreboding as we thought it would be, and it makes us feel better swimming with all the uncertainties because we know we also have possibilities. We’ve dealt with accessibility and medical equipment and insurance issues, resolved conflicts with agencies, changed medications, changed doctors, saw doctors less frequently, bid good-bye to nurses, doctors, and caregivers who genuinely showed Isabella concern, care and love. We got better at taking care of her feeds, and calculating daily calories, managing her throw ups, changing the Mickey button, operating the overnight pump, we became experts at bolus feedings, and administering her meds. As Isabella’s list of complications used to grow longer each time we went to go see a doctor when she was younger, the list eventually grew stagnant, and it no longer needed extra items, and it became shorter as some medical issues did resolve themselves over time; things such as acid reflux, kidney reflux, sleep apnea, uncontrolled seizures, heart murmur and hearing loss.
We researched and learned about navigating through insurance company policies and benefits, and educated ourselves about the IEP process, parent and child rights, the Individuals with Disabilities Education Act and other related laws. With all the studying we had to do we might as well have gotten an honorary degree as a doctor, nurse, therapist, or lawyer. We advocated and fought and worked really hard, because until our daughter has learned how to fight for herself, the work of advocacy is all on us, the parents. We became warriors.
We were tremendously changed as individuals. We let go of the “I can fix this” perspective and learned how to just “be” with Isabella. We learn to spend time with her and play with her instead of doing disguised therapy every single time. We became more relaxed and less frustrated, and in this process both my husband and I became more compassionate special educators, better parents, and my son, a more caring individual. Every single one of us was affected by this journey, and everyone in the family is learning and redefining the concept of patience every single day. We learn a lot of things from our daily interactions with Isabella. We learn perseverance, we learn to let go, we learn to never take anything for granted, we learn how it is to really pray; and we learn that tiny miracles do happen every day. We also, in a way impact the lives of people who are close to us, and sometimes, the lives of those kind souls that we randomly meet.
We would wait for developmental milestones for what seemed like forever, that sometimes we had to put the waiting on a shelf and forget about it until it would show up in the most ordinary of moments, mostly on typical Sunday afternoons at home where we are all busy with chores. When research said she might not walk, she beat the odds by learning to crawl after a year, and eventually pull herself to stand and cruise at around 2 years. Now at three she is walking, still rather wobbly, but walking nonetheless. So I feel more hopeful that in the future, “talking” will find its way there somehow and happily surprise us one day.
As for the love that I previously thought was not there, it came one day and hit me like a brick when my daughter was about 4 months old. I remember looking at her and realizing that I no longer see the features that the short arm of 4th chromosome represented, it was like seeing her for the first time. A love so big that it is painful, that it made me cry happy tears. I realized then that it did not matter whether she was normal or not, because really, my dream was to be the best mommy I could possibly be, and Isabella, God’s little promise, gave me a chance to be just that, and that made it all perfect.
Written by: Donna. She is a mother of two kids. She is a special-ed teacher. Follow Isabelle’s medical progress on www.myangelisabella.blogspot.