As a special needs parent you face many obstacles, one of which is just trying to navigate your way through this world. To give your child the very best life they can have. And there’s really two worlds we exist in – your family, friends, and life that was before your child’s diagnosis and the special needs community you find afterward. Because once you have a special needs child it’s a battle of dealing with a whole new way of life. A new journey that leaves you not knowing exactly where you fit in. Trying to balance these two different worlds.
Once you have a special needs child you feel isolated from the life you had before, especially if you’re a first time mom. You feel no one truly understands your situation- and quite frankly, they don’t. Just as you wouldn’t have understood until you were made to. It’s learning to juggle a new language that most don’t understand. You speak in acronyms that you never knew existed like DME (durable medical equipment- your supply provider) or LMN (letter of medical necessity) or even PRN/BID and so on for medications. You juggle specialists that you never thought you’d have to take your child to. And you might even have to figure out how to live life with a stranger in your home (your child’s nurse). Learn how to balance your mothering against their job and duties. And do you think the people from your old life grasp the frustration when you’re complaining about the nurse using the last of something and then not telling you? No. They might listen, but they don’t understand. And they probably laugh when you tell them you had to fire a nurse over a pulse ox probe. Seriously, a pulse ox probe. I even chuckle about it now, but at the time it was a serious offense that left us without one for days – not being able to know her oxygen saturation or heart rate. Big deals in our world. Your old life doesn’t understand that you might not make it to a lot of functions or that you might have to cancel last minute because your child had too many seizures for your comfort that morning. It doesn’t mean you don’t want to be there. Your priorities have shifted and you’re not just a mom who can hire a babysitter. You’re also a nurse, an advocate, your child’s lifeline. You’ve become the recognized voice to the after hours operator for your child’s doctor. A regular face at your local children’s hospital. You’ve pretty much have become a whole new person still trying to stay connected to a world that supports and loves you but doesn’t understand. And you will always need these people, your old life. They will be crucial to your sanity at some point in your journey. They’re not replaceable, disposable, though they might feel like it at some times (and you’ll feel you’re replaceable for them too), it takes effort – lots of it at certain points – effort and understanding from both sides. Like I said, they don’t understand but there are some who are learning and trying and loving you the entire time.
And then there’s the world that does understand….that have children just like your’s. That have been through the same challenges. They, too, have had to remind themselves to breath as their child is being taken into yet another surgery. They, too, have stayed up too many nights watching their child while they sleep, afraid of what the future holds. But where do you fit in there? The newbies? The veterans who know way more than you? The parent that researches too much and over thinks things? The parent that is naive in their lack of researching and learning – ignorance is bliss to some? Parents are all different and still manage to understand and help each other. There’s parents that have been around the block more times than you can count. They’re like your Yoda. They’ve been through it all but they also see the reality now. The reality of what the future truly holds. The reality that you, as a new special needs parent, sometimes refuse to see. They still hold on to hope, just like you’re doing, but they’ve seen it all. They’ve released too many balloons for their friend’s children who have left too soon. They’ve watched everyone of their friend’s fight a huge fight at some point. Some kids recover and some do not and they’ve watched it all. They’ve prayed for days on end for children they only know through pictures. They’ve answered a million questions- sometimes the same one over and over. When you’re new to this group you still don’t feel like you fit in. You’re new. Inexperienced. Looking for hope and answers. You finally find your way. Find those parents that you connect with. And you fall in love with children you’ll never get to meet, but it’s a world that understands. A completely different world than what you’re used to, but they understand your frustrations, your fears, and your dreams. They truly get it.
And then, one day, the unimaginable happens. Your child dies. And you’re stuck. Completely stuck between two worlds. Hovering in this space of unknown – where few have been. Where trying to navigate is just as hard as having to be there in the first place. You feel like you’re no longer a mother. You can now go out and do things with your old life, but sometimes it’s still hard and they still don’t understand. You feel like you’re no longer a special needs mother. Like you have no more input or answers to the questions your support group asks and now they don’t understand. You almost feel like you’re no longer a valuable asset to either life. You’re just there. You’re an example of the reality that none of the parents what to see. You become highly vulnerable to all situations. And awkward. Your new friends don’t know of your life as a special needs mom. Your struggles, your pain. And any new special needs mom friends are curious of your struggles, your loss, and how it became that way. It’s a great balancing act that isn’t easy or pretty.