What I needed to hear 10 years ago

What if I could hop in a time machine dial it back 10 years and tell myself some things about raising a child with a disability... 

This child will change you. I know how cliché that sounds, but seriously. Your child's life will be different and so will yours. Your relationships will change. The way you look & respond to the world will change. Everything will change in a way that is more dramatic than you could ever imagine. You have bravely accepted a life that some would have ended before the child developed beyond a cluster of cells. You will emotionally experience the most unimaginable highest highs and the most devastating lowest lows… there is no way to explain the incredible joy you’ll feel when your child accomplishes the most mundane skill that every other person in the world takes for granted. You will celebrate like just won the Daytona 500 when your child uses a two finger pincer grasp to pick up a Cherrio, because this is a skill you have worked on for years…. And only a few people will really get how happy you are or remotely understand how important a two finger pincer grasp is to learning how to someday tie their own shoes. You will learn to find joy in the mundane details and somedays the world will seem almost magical. And there will be everyday angels. There will be people that grace you with the smallest most boring gifts, but their thoughtfulness will mean more to you than a bar of gold. A thoughtful heart bearing pair of longer shoelaces to a child with a fine motor skill problem and to a mom who just can’t seem to remember to buy them during her trip to town will restore your faith in humanity.

There is also no way to explain the lows you will feel.  You will commit years of your life to nurturing and willing this little person to thrive, but it won’t be enough.  Because, even though you have successfully siphoned the energy from the universe to persevere through the darkest of days, through endless nights in the NICU, through years of therapies, surgeries, endless appointments, and paperwork- it won’t be enough. One day you’ll realize there will always be appointments, therapies, surgeries, specialists, paperwork, and somewhere you need to be. The thought will be crushing, but you can manage a schedule. It’s okay, right? It still won’t be enough. You child might be handed another diagnosis to add to a list that grows every year. Your child might have an unexpected medical setback or emergency. But, you can make it through that.. you’ve made it through all the other stuff! Have you had enough yet? The universe doesn’t think so.  You have done everything in your power to help this child thrive to their fullest potential in the formative years, but it won’t be enough to protect you or your child from the awful world that is outside your door. The universe you can’t control. It won’t be enough to protect you from feeling like the most miserable failure when you can’t command the universe to see the world through your eyes.  It won’t be enough to protect you from the grief you will feel over and over and over again when you realize how different your lives are.

One of the hardest things as a parent of a child with a disability is when people start to notice that your child is 'different', because for the first few years of life you can somewhat control the environment that you and your child is exposed to.  You can surround yourself with family and people who understand your struggle. You don't have to go a lot of places where there will be questions. For the first few years it's easy to mask some of delays because babies are babies and nearly everybody loves a baby! All babies are relatively helpless and require most of the same things- even with a visible disability there is some sort of evolutionary mechanism that tells us all babies are worthy of love and makes us all want to coddle and love every baby.  As long as your child appears content strangers will typically smile and oogle at your baby like all other babies and they won't flinch at 'quirks' like your baby wearing glasses or if his nose is a bit crooked... and if they do inquire they will likely do so in a more caring way and say things like, “But he has such gorgeous eyes!” They will work to deflect attention from any obvious disability. 

But, it's when the child grows into a toddler that the world begins to realize that your child is 'different'... strangers will suddenly reaize that your toddler is not walking, but in a stroller. The world will realize that your child is not on the track of other toddlers and they will pinpoint all the things that don't fit in the 'normal' stereotypical toddler category.  ...and often they will feel the need to comment... and now more often in very insensitive ways. You’ll wonder how the world can’t understand the immeasurable struggle that you have already gone through just to get to where you are at that moment… and in that moment you’re probably standing in aisle 5 of the grocery store.  You’ll stand there and wonder how the same parent that has commanded the power of the entire universe to survive the last two years can suddenly be wondering how you’ll survive another trip to the grocery store. You’ll realize that your ability to command the universe was mostly the result of how small your universe had been and that the universe is ultimately endless. This moment will trigger some very visceral emotions and with that will come enormous grief. 

Yes, parents of disabled children grieve.... and new parents to the special needs circle might not recognize the process. It took us two rounds and a lot of reflection to realize, on this journey of raising a special needs child, as parents we grieve a lot.... and the grieving doesn't end, but comes in waves.  You'll experience days/years of calm seas and one day a poorly delivered comment from a stranger about your child's disability can send a tidal wave through your world.

Recognizing and sorting through the grief is critical. You have to recognize that when you react negatively to the worlds view of your child you are internally grieving the child that he is not. You can't properly respond to those hurtful comments, stares, and situations if you have not dealt with and accepted your own negative feelings about your new family. You will hyperfocus on the things your child is not or might never be and will suddenly be drowning in self-doubt and sadness… and trust me- you don’t have time for these feelings. Deal with them!  As a parent, you have to recognize and work through that grief. Before you can truly celebrate all your child is you have to accept all he is not with your whole heart. When making the choice to begin a family, we all have the picture in our head of our family... I am willing to bet 99.9% of those visions did not include a child with a life changing disability. When you lay in bed at night after a long day and start to cry, it's because life isn't fair and you know it. This isn't what you signed up for and it’s okay to say that out loud! You don’t have to pretend that you're always okay with it. It’s all pretty shitty sometimes, but you only have about 20 seconds for a pitty party because that’s exactly how long you have before somebody knocks on the bathroom door. So, you have to recognize this is part of the plan the universe has set for you and because you love your child beyond all measure, you have to accept this life with your whole heart. Half-sies will not help you deal with this, you have to go all in. You have to give yourself permission to grieve and work through those emotions, so you can make the next day better and not be bitter. 

Learning how to manage that grief is a huge piece of learning how to respond to those who recognize our child is different, because in the last 10 years, I’ve found that as your child ages and the gap widens between them and their peers those grieving moments occur more and more frequently. Not only are the adults around your child aware that he is different, his peers are now developing the awareness, and so is he. Once you learn to manage the emotional ride, managing your response to those people who point fingers and stare is much easier. The tidal waves become a rolling wake. You will be empowered to educate those you have negative encounters with. It becomes easier to approach those children on the playground and have a very casual chat with them about how your child has two eyes, two ears, a nose, and a smile.. that the things that make them different are far fewer than sum of what makes them just the same. It’s easier to politely reply to the rude comment in the grocery store about your child’s behavior… and it will be easier for your child. Because they won’t regularly see their differences as a burden, but begin to recognize what makes them unique is what makes them who they are. Their self-worth is highly dependent on your parenting, so get it together Sarah. Everyday won’t be roses, you are still raising a child and they have normal child issues, too.  

There will definitely be re-runs of the crappy comments, because there are some really crappy humans out there. Disability or not, we all have to deal with those people. If they weren’t telling me how awful my kid was acting, they’d probably be telling me how ugly my purse is.  There are just crappy people out there. But work the work and it’ll get easier, because by working through the grief you will find peace and the everyday hiccups will just be annoying, not earth shattering. You will find peace in your purpose and place in the universe. 

The initial journey through the grief is emotionally and physically exhausting, because nobody has really given you permission to get angry and fully grieve the death of your fairytale life that you dreamed about. But, do it! You’ll find out your life is way cool and more magical than you thought.

Your success as a special needs parent is dependent on some form of self-care and reflection. Pretty soon that reflective trip to grief-town will be like grabbing a gallon of milk at the gas station- quick, a little annoying, but necessary to keep your family firing on all cylinders. Taking care of yourself does not make you some who-do-voo-doo earth momma who thrives on vibes, but if you want to be like her- that’s cool too. Give yourself a break. Your life is cool and so are your kids.. and remember we are all just moms passing each other on the street trying to keep their kids from eating the candy they found on the ground. None of us are really all that different. 

It’s time to get back in my time machine now, take care. I mean it.