What to Expect When You Don’t Know What to Expect
Has anyone out there with children not heard of the book “What to Expect When You’re Expecting”? Written by Heidi Murkoff during her first pregnancy in 1984, the original edition has been updated five times over the years. Numerous spinoff works include titles such as “What to Expect When Your Wife is Expecting” and “What to Expect the First Year”. The website www.whattoexpect.com proclaims to be the most trusted pregnancy and parenting “brand”.
I never read “What to Expect When You’re Expecting”, or any other baby book, for that matter. My approach to most things in life has always been to sort of wing it…and hope for the best. Perhaps by the grace of a higher power, I’ve done pretty well so far - though there are days I wish a guidebook existed for those of us raising a child with a rare and unexpected diagnosis.
I remember the shock and the crushing weight that came with our son Sean’s diagnosis of Norrie Disease when he was four months old. I felt like my brain was melting down; I couldn’t comprehend any information we were receiving from specialists. What in the world is Norrie Disease? I’ve never heard of it. How can our child have this unfamiliar condition that I’ve never heard of? How did he end up with it? And most importantly, how do we fix him? The unexpected diagnosis of a severe visual impairment in your infant is beyond life-altering.
We are now seven years into our journey and one of the most important lessons I’ve learned is that there is no easy “fix” for Norrie Disease, or any of these rare retinal diseases, but that’s okay – our children were not born broken. There is no need to try to fix anything. You quickly realize that different does not equate to less. A child with a disability (or multiple disabilities) can be an amazing teacher for those who are willing to be receptive. There is certainly no one-size-fits-all approach when it comes to offering advice to other families. I’m sure there are many helpful books out there, written by parents or experts on disability. I haven’t read any, though I would be curious to know if anyone is promoting the #1 “brand” on disability parenting….
In this house, we march on – learning as we go, trusting the guidance from many experts in our circle, and loving our child fiercely. Below are just a handful of the lessons we have learned along the way that I offer as advice to someone new to the journey.
Trust your instincts. Always. ALWAYS. If you feel something is not right with your child, pursue your gut feeling until you have concrete answers. You cannot afford to be meek and mild when your child’s health and well-being and educational success are at stake. Don’t worry about offending doctors, experts, teachers, case workers or therapists. Voice your concerns – whether related to a medical issue, a school issue, or anything else of significance - and don’t stand down until they are addressed. Do not doubt yourself. You are the premier expert on your child.
Connect with other families. This is so vital to do early on after your child has received a diagnosis. Yes, you will be knee deep in grief, confusion, exhaustion. But that is precisely why you need to reach out. I felt like I was drowning. I felt like my life had been stripped of all joy. I know it sounds strange but that’s exactly what went through my mind – I just found out my infant son is blind, and I don’t think I’ll ever have anything to be happy or joyful about ever again for as long as I live. What a ridiculous thought. And it certainly did not come to fruition. Sean brings us more joy in a single day than some people experience in a whole lifetime. But the point is, your thoughts and emotions will take you on a wild roller coaster ride. You need to connect with other families who know how you are feeling. Your friends and family will be an invaluable support system, but other parents and families who are in your same orbit can really help you to process everything. Search for support groups on Facebook, through local churches or hospitals, or do a Google search. We are connected to Norrie families all over the world through a Facebook support group which has been an absolute lifesaver. There are other parents out there who “get it”. Don’t be shy with your questions, your frustrations, and your triumphs.
Research, research, research. I never really enjoyed researching for my college papers and assignments, but I research now like it’s my full-time job. I’m currently researching things like local piano teachers who have experience teaching special needs students, best tasting liquid multivitamins for kids that can be snuck into apple juice (since Sean eats zero fruits, vegetables, or anything else with nutritional value), and what types of Medicaid waivers are implemented in different states in case we ever move from Virginia. There are so many things to look into on top of actual treatments, surgical procedures, and therapies. There are the medical issues and the non-medical issues – which are vast. Research everything thoroughly so you can make informed decisions. Ask for input from other parents. Read as much information from medical studies as you can understand. Browse through reviews of products before you buy them. Search for online patient reviews of doctors and specialists. Look up school ratings and reviews. Google information on the IEP process so you know what to expect during meetings. Most of this is common sense and you would be doing it anyway – whether you have a child with a disability or not, but I believe it takes on a level of heightened importance and the stakes are a little higher when you have a child with additional needs.
Advocate, advocate, advocate. See above paragraph. Similar to researching, advocating for your child will become a (seemingly) full time job. You will be your child’s voice, their cheerleader, and their champion until they are able to advocate for themselves. Whether you are at a medical appointment or IEP meeting, applying for some type of assistance or support program, or out in a public setting, do not be shy about voicing concerns or requesting something that is in your child’s best interest. Question professionals (who do not know your child like you do) if they suggest a course of action you don’t agree with. And seek backup if you need it. Hospitals and medical centers have patient advocates. There are professional educational advocates that can review IEPs and attend meetings with you. Use your resources and build your team. Raising a child with a disability is not for the faint of heart – and often you will be learning as you go. Effectively advocating is definitely more of an art than a science, but it’s one of the most important things you will do for your child.
Go easy on yourself. Don’t beat yourself up for dropping the ball from time to time. For needing to escape every now and then. For not knowing what you don’t know. It’s hard enough to parent a child without a disability or any additional needs in the best of circumstances. Parenting a child with a disability or rare disease can feel like a herculean task – because it is. Keep an eye on your own physical and mental health and don’t neglect your medical care. This journey is a long-distance trek, not a sprint. Stress and exhaustion will wear you down. Accept help when it’s offered. Give yourself as much love and support as you are giving your child.
Sit back and be amazed. Your child is a gift. All children are amazing and special in their own ways. All children are unique. We have three boys, and we adore each one for their individual personalities. We certainly don’t have a favorite child. But I will say, without reservation, Sean has opened our eyes, our hearts, and our minds to a whole new world. We celebrate every little milestone mastered with him like we won the lottery. His pure joy exhibited daily, his sense of humor, and his complex mind leave us in awe. We love to watch how he experiences the world around him. We don’t consider his visual impairment to be a showstopper. Sean is a gift. He is a teacher. And your child will be, too. Prepare to be amazed.
~ Stephanie Brennell
Member, PRRF Family Advisory Committee
Proud Mom of Sean