I have never met anyone who said they were prepared to be a special needs parent. It’s not something you can prepare for, it just happens. Mere moments before we are just parents…plain and simple, filled with hopes and dreams for our child.
Olivia came into this world fighting for her life; during birth, she experienced Hypoxic Ischemic Encephalopathy (decreased blood and oxygen to the brain). Afterwards, her breathing was unstable and they resuscitated her several times. After stabilizing her, she had seizures. Medicines were given, but the seizures continued (starting and stopping) over the next 24 hours. Olivia was transferred to the NICU, where she spent 14 days.
We met with her neurologist two weeks later and he spoke of brain damage: how it was too soon to tell, but a possibility. Olivia looked perfect in every way, yet somehow, something was changed and we feared this change would be permanent. He never said the words to us…hell, for the next seven months not one medical professional would say “the words” to us.
Olivia was discharged. As much as I wanted to be happy, the fear lingered. Before we left, her doctor said, “Just love her and give her every opportunity as you have done with your other children. Don’t treat her any different”. We loved our daughter from the first moment we laid eyes on her. I desperately wanted answers, information, and a clue as to the effects of the brain damage. We left the hospital with so little information.
Olivia’s brother and sister were relieved to see her outside of a hospital. They took turns holding her without wires and beeping machines. It was a beautiful sight to see my three children together, in the our home, and I couldn’t help but feel complete in that moment. But over the next days and weeks we saw changes in Olivia’s demeanour, leading to more alarming discoveries.
To Olivia’s next paediatric appointment we brought a list of concerning behaviour. We were told to be patient and that she could be delayed because of her difficult start in life. At that moment, I wanted to scream. It felt like my head was going to explode. WHY WON’T ANYONE TELL US WHAT THE HELL IS HAPPENING!!?? I was fed up with the “wait and see” approach; it had thus far done nothing to help Olivia and had only managed to spiral us into frustration.
At seven months, we received a call from a paediatric neurologist from a hospital four hours away. He had spoken with Olivia’s paediatrician and wanted to meet us to see how the last few months had been.
Olivia was not developmentally on track with children her age. My husband and I were eager to sit down and discuss her progress with a new neurologist. We thought someone with a fresh perspective would put an end to the questions and concerns that had been haunting us.
While he examined Olivia, Craig and I filled him in on the concerning behaviours we had witnessed over the past months. He listened and nodded, while paying attention to how Olivia responded to his examination. Once complete, he invited us to sit and discuss Olivia.
“So folks, I assume you have been spoken to about your daughter’s condition by her medical team?” he asked. I had to resist a sarcastic laugh that wanted to burst out. My husband replied, “No, we haven’t been told a thing, other than to wait and see how she developed”. The doctor quickly opened the file and read us “the words”. The words no one else wanted to say…the words we needed to hear, but could not have been prepared for in a million years.
Your daughter has cerebral palsy”.
We left the appointment with more information than we knew what to do with, and although it wasn’t what we were expecting to hear, it gave a name to what was affecting our daughter.
What I learned:
Parenting a special needs child requires a lot of time spent in appointments, therapies and time spent with the child to help them reach their full potential. When you have other children at home, you work hard to ensure they also feel they have your attention and don’t begin to resent the time you are spending with their sibling.
You can become exhausted with this juggling act, and at times overlook the needs of your partner. Slowly, the relationship begins to break down, causing the couple to drift apart. Added financial stress doesn’t help either, equipment purchases, adaptations or renovations to your home, medications, travelling expenses for appointments and more. Craig and I definitely felt the weight of an uncharacteristically non-communicative relationship. In all the years I had known my husband, I had never lacked the ability to communicate how I felt, until then.
The grief you experience is another load to bear. We grieved for the child we dreamt of. Facing the reality tore me up inside. It took me a long time to realize we were grieving, but when I finally owned the emotion, as hard as it was to accept, the sadness also began to disappear.
Becoming a special needs parent can at times feel as though you are falling down the rabbit hole into a world that is both unnerving and confusing. But here is a little bit of advice: No one truly knows what the future holds. Doctors, therapists and other healthcare professionals are there to assist you and your child to navigate this new world. At times, information they will provide may cause you to worry and jump ahead to thoughts about your child’s future. You need to listen and store that information, but remain present. Wasting today worrying over possibilities that may or may not occur is wasting precious time you have today with your child. If my daughter has taught me anything, it is to appreciate what a day can bring, how a simple gesture, moment, circumstance can change your entire perception of what you thought you knew.
For new parents beginning your journey—be it special needs or not—take a good look at your child. Look beyond the package, and you will discover the beautiful gifts they have to offer.