This is an open letter to Cooper’s Mom and all the moms out there who need this letter too.
I don’t know you. You don’t know me. Yet there is a connection that has happened through the span of words reaching and speaking to your heart. For that I will be grateful. There are times that this journey gets long and lonely and you wonder if anyone hears you anymore.
There are times that I look back and see how lonely it was. I wanted so badly to reach out to someone and not feel like a burden or inconvenience or bother. Even when I was told by my friends that I wasn’t, I still felt like I was. I wanted to share all the joys of Em’s little day to day successes and sometimes I felt that joy washed away because I always felt like I had to add at the end, “I guess you had to be there.”
There were my own personal meltdowns. Watching my daughter and not understanding why I couldn’t reach her. Why she cried and would meltdown and not being able to console her and feeling my heart shred into a million pieces. So desperately wanting to pick up the phone and call a friend. I tried. And once again, not being able to convey the anguish, I stopped calling them. They didn’t understand.
When her initial diagnosis came through, I felt like we as a family had to bear this burden. We had a few that we could call and rely on but once again, how do you keep leaning on the same people and want them so badly to understand and just feel like they just aren’t quite there. It’s hard to explain this so someone can understand.
You start to look at all your options and care for your precious amazing child and want to do right by them. You weigh out all the medication choices, dietary options, therapies, early interventions, and more and feel the weight of the world closing in on you. At that point wondering where you are safe and comfortable looking for that place to turn to. Hope is the farthest thing from your mind. Alone is what is there.
I wish I knew a lot of things when our journey first began. Our daughter received her diagnosis late and there are times I struggle wondering if I had pushed harder, would her diagnosis have come sooner? Would we have been able to better her life sooner with therapies to help her function in environments that stressed her out? At the end of the day, all the questioning in the world won’t change the fact that here we are, just shy of two years later, she’s almost 13 years old and living and loving life.
Her full diagnosis is ADHD, ASD, PDD-NOS, Anxiety Disorder, and Sensory Processing Disorder. I saw all the signs and all the “red” flags but I didn’t push it or follow my gut instinct. As she went through her therapies and found “grounding” in life, life got better for all of us. We communicated better as a family. We slowed down. We planned our life out a little more purpose driven. And yes, we felt alone, but we also found support in unexpected places. We value each other (mom, dad, brother and her) and we look at what it is that everyone needs. Our extended family has found their way on this journey too.
She isn’t one that fits into a box. She is social. She can hold appropriate conversations. She wants to have friends. She doesn’t like groups and while she fixates on things, they change like the wind sometimes. She can problem solve. It didn’t all happen overnight. And she still has to pace herself but she using her coping skills (sometimes with prompting) to get herself through tough situations. Things that used to be dynamite on a fire for a meltdown are now sparklers blowing in the wind. It bothers her but it isn’t the end of the world.
I wish someone would have told me, it’s going to be ok. Slow down. Take time. Take time to grieve your expectations for her but it isn’t the end of the world. Find a few like you, needing that support and lean on each other. Share the good times, bad times, and times we all live in the land of confusion. Shaking or heads at the crazy stuff these kids will do.
They will live life more than you can imagine. They will do everything with her whole heart. That’s more than most of us can say. They will struggle but with some encouragement and time, they will get back up and press on. They will be successful, just maybe not how we first imagined it. That means though, sometimes they will end up going further that we ever imagined.
Follow your gut and if something isn’t right or there is a therapy you think will benefit your child, fight for it and being heard. This road won’t be easy but the blessings and joy are worth the time. It may not always seem that way, but you’ll get there someday. And don’t beat yourself up over the bad days.
Don’t hold back your joy. Don’t hold back your anguish. Don’t hold back. Shout it from your castle walls to those that are close enough to hear. Because, even those who don’t get it and who matter will celebrate with you, cry with you and try to understand as you are standing on those walls. And those that don’t matter won’t.
As a parent, don’t dwell on would have, could have or should haves. Focus on the here and now and do your best to plan for the future. Take mini moments for yourself. Don’t feel guilty for allowing your child to have time with a preferred activity if you aren’t up to the fight. Pick your battles. Know it’s ok if your child is living off chicken nuggets and pancakes. Feed them what they will eat because tomorrow it may be bologna with ketchup and toast with peanut butter.
As for taking care of yourself, let go of the guilt or anger. Focus on things for yourself, a CD or book that you can unwind with. Take moments to yourself, even if the only way that moment comes while shopping for groceries alone. And love yourself above all.
They hear us. They may not be able to tell us they love us, hug us or look at us but they do. Even when they are screaming they hate us for taking and making them do a non-preferred activity or participating in a therapy they don’t like. And sometimes it’s ok to negotiate and compromise. Just know where your line in the sand is.
And don’t dwell on a bad day. Each day is a new day and it may be the day your child blows you away.
Above all else, I am here. You are NOT alone. WE are not alone. I get this journey is hard and your path may vary from mine, but I get those ups. I get those downs. And your castle is next to mine. When you shout from your walls, I will hear you! Tell your stories. You never know when you will be the inspiration for a person needing it.
Hugs to all you that need it!