Parents arrive in Holland (or the world of disability parenting) in a variety of ways. For some it is a gradual realization, for others it’s abrupt. Regardless of how one arrives, there is always stress, anxiety, what ifs and what nows. Arriving in Holland was such a shock for me, I felt like the world was crashing in on me. If I could go back and sit with myself as I held my sleeping baby and learned that our world was never going to be the same again, I would want to tell myself that:
1) Your child is still the exact same person they were before you heard the diagnosis.
No diagnosis, surgery or condition changes the person that your child is. Giving a name to a problem is hard to hear, but it’s just a name. Learning about a diagnosis can be very difficult for parents, but having a name for the challenges you probably already knew about doesn’t change who your child is.
You don’t walk into that appointment with an adorable bouncing baby boy and leave with cerebral palsy. You walked into that appointment with an adorable bouncing baby boy who happens to have cerebral palsy, and you walked out with the same baby, but now you have a name for why he struggles with certain things.
I remember the gut wrenching agony when they wheeled my baby into brain surgery. He was only a-year-old but had the most adorable friendly and outgoing personality. Would he be the same person after they tinkered with his brain? He woke up from surgery several days later, looked at me said “mama” in this sweet croaky voice (being intubated for days will make a voice a bit croaky), then he tried to reach for me and realized his arms were restrained to keep him from pulling at tubes. He croaked “uh oh” and made the sweetest, saddest little face… Yep, despite brain surgery and being in a medically induced coma for almost a week, my adorable little boy was still in there.
2) You are still the same person.
You will come out of parenting a special needs child different in many ways, in my opinion most of these changes will be for the better. You will be more understanding, more patient, more knowledgeable, more savvy and resourceful then you ever thought possible. However, underneath that growth and change, you are still the same person you were before. You still love yoga and vanilla diet coke and music from the 80s. Remember to indulge in some of those things you enjoy from time to time, you are important too.
3) You are now someone else too.
You will now and forever also be the mother of a child who has special needs. This will be a piece that you will add to your identity, a badge that you will wear proudly. While I’m still all the things I was before (see #2), I also have this whole other part of my personality that can handle a whole more than I ever thought I could. Many people are defined by there careers, police officer, full time parent, bank teller, store manager, accountant, psychologist, what you do becomes a big part of who you are. In that same way, being a special needs parent will define you. It will become a special part of who you are and who you will always be.
4) You are the expert on your own child.
I know that it’s hard to believe, but trust me, soon enough, you will know more than the doctors who treat your child. Not in all ways of course, but you will be educating your child’s treatment team about your child and his needs. You will become an expert on things you presently don’t know exist. I’m not a medical doctor, and I wouldn’t for a moment claim to know more about the general world of medicine than the wonderful doctors do who care for my child, but I do know more about my child and how his medical conditions and disabilities are interrelate. I often educate the hematology team about the neurological challenges and the neuro team about the bleeding issues. Trust that you are the expert on your child and that your voice is an important one that should be heard when making decisions about your child’s care.
5) Trust your instincts.
You know your child better than anyone, you know when they are hurting, when they are whiney, when they want to play or are sleepy. If something doesn’t seem right, stand your ground. If you don’t feel like your child’s doctor is hearing your concerns, find another doctor that will listen to you. I remember when my son was a baby and we were told that he had probably had an in utero stroke. I was certain that this was not the case because he had previously had more mobility and it was decreasing. He was getting worse and I knew it in my gut. When I called the neurologist to express my concerns, I was told I had first time mother syndrome and I needed to stop worrying so much. I didn’t want to be that crazy first time mom, so I dropped the topic and waited for my sons MRI that was scheduled over a month away. He was rushed from that MRI into emergency brain surgery… mother’s know, we need good professionals to help us put the pieces together, but we know when something is up with our kiddos!
6) You can do this.
Remember when you saw that mommy taking care of her chronically ill kiddo and you smiled politely and thought to yourself, “I could never do that”. Guess what, you can, you will! I know you won’t believe right now, but this is completely true: give it a few months and it will be your new normal. When it was first proposed to me that I should learn to start my sons IVs (a common practice in the bleeding disorder community) I was pretty sure that the nurse was having some sort of breakdown. Here we are years later and I can pop an IV for my son better than most nurses because I’m very familiar with the quirks and turns and the locations of his veins. I stick him three times a week so I have a major practice advantage over the wonderful nurses who help take care of him. I know so much more about the world of disabilities, about medical terminology and about therapeutic interventions than I ever knew existed 12 years ago.
7) It’s going to be OK.
I know it’s hard right now, it’s scary and you feel completely unprepared. Trust me when I tell you that it’s going to OK, you can do this! Not only can you do it, but you will do it really well! You’re going to be an awesome mommy to this child whose needs you don’t even yet completely understand, because you love your kids and will bend over backwards to get their needs met. So limber up because you will be doing some impressive backbends to get this little ones needs met.
8) It’s going to be better than OK.
Some days are going to be tough, you are going to fall into bed at the end of it and be amazed that you survived it! But you will survive those days, and there will so many wonderful, happy, love filled days that will far outnumber the tough ones in the end. You will find so much joy in parenting this amazing child, you will feel so blessed to have him in the world with you. No, it’s won’t be easy, and often it will be very hard, but it will be completely worth it!
I’m not sure how much of that I would have been able to absorb back in the early days, and I guess I’ve muddled through and figured most of it out on my own. What would you tell yourself the day you arrived in Holland?