The problem with special needs parents (me included) is that we desperately want to live a normal life, to fit into society. It’s not so much the normal we crave, but the fact that no one understands the pain and the hopelessness we feel. No one understands the strength, the determination, and the fight that we, as parents of a child with special needs, must face on a daily basis.
The Dark Well
Moms of kids with special needs are so alone and we try so hard to wear a brave face at all times, yet in our own minds we are not as brave as we appear to the world. Let me describe it this way. It is like we are in the bottom of a very dark Well. At first we don’t want to get out because it is too hard to climb. We want to resist the fact that our child has something wrong with him or her. I remember when Mighty Z was in the NICU, and in the beginning I didn’t want to associate with the other parents, simply because I didn’t want to belong to the special needs sorority of mothers. When I go up to the NICU now that is the same reaction I get from the new moms. They say, “I didn’t want to call you because I didn’t want my baby to be trached and I was hoping this would all be okay.”
That, my friends, is when we are at the bottom of that dark Well and we just want to sit there for awhile, to believe, and hope that we will not have to buy the special needs awareness T-shirt.
Finally, when we start to accept this journey, and we want to start climbing, we are already so weak from sitting at the bottom of the Well in all of the muck and mire, that we can’t even get half way up out of the Well. We keep sliding back down, landing with a great big plop in a heap of tears and pain. But this time, when we are sitting at the bottom, we feel so alone that we want to get out of the Well, but we have no idea how to start to climb up and out. We try again—digging our fingers into the sides of the Well, breaking fingernails, sweating, straining and begging to get out, only to slide down once more.
This is when one of two things happens. We either slowly and painfully climb out of that Well by ourselves, or a seasoned special needs mom that has been walking this road for years stops to throw down a rope or a ladder. She helps to pull us out and starts to teach us how to navigate this new normal journey that we have been thrust into.
I had to climb out of my Well by myself, and it took years to reach the top. I navigated how to walk down this hard road by myself with no map, no compass, and no translation book. I got lost along the way, having to double back many times, and I certainly didn’t know this new language of medical terms. Everyday I would have to go home and translate the day’s conversations.
I think it is up to us as the older (or more seasoned) moms of kids with special needs to help the new moms. To give them the maps, the compasses and the translation books. We need to help pave the way, to shine the light–to throw down the rope—because we all know that a simple rope to help climb out of the Well is priceless.
The seasoned special needs moms have to teach that this “new normal” is just a different place. It’s slower-paced than the old normal world. It may be less flashy in this new normal, but after you’ve been there for a while and you catch your breath, you look around and you begin to notice that this new normal is full of beautiful smiles, inchstones instead of milestones. It’s filled with a sense of pride and accomplishment that few children feel at such a young age, and maybe most importantly, the deepest love most humans will never feel.
But if you spend your life mourning the fact that you didn’t get to be in that old normal world, you may never be free enough to enjoy the very special, the very lovely things about this new normal world that your little miracle opened your eyes to see and experience.