I feel like lately I have seen some of my friends really going through hardships with their kids. There are so many things I want to say to them, but know that in their heightened emotional state — ready to fight against the world — my words aren’t necessarily what they want to be hearing. So I thought I would take this opportunity to express how I feel.
From one special needs parent to another, here are my thoughts:
I see you. I know that this isn’t the life we planned for when we saw the positive test, heard the heartbeat for the first time, and looked at the first sonogram. When we imagined what our lives would be like when that bundle of joy finally makes their entrance, this wasn’t it. No amount of planning in the world could have prepared us for the intense ups and downs of this life.
I know that some days can feel like a literal hell on Earth. Watching your child struggle, all while you are struggling too is something someone on the outside will never understand. I admire your strength. Even on the days when you don’t feel it, you are strong, SO STRONG. You fight with all your might. You wake up every morning and do the dang thing!
I feel the exhaustion with you. Even when you rest, you’re not resting. You spend every waking moment worrying, planning, thinking, evaluating. And let’s face it; sometimes those thoughts and emotions creep into our dreams. When people say, “I don’t know how you do it,” I know the feeling of “what choice do I have?”
I know the constant state of worry. Always worried if you are doing the right thing and making the right choices, constantly picking through every action, playing every moment over in your head, wondering if you should have done things differently. Just know that as long as you know you tried your best when you lay your head down at night, you have already won. Worrying and striving to be the best parent or caregiver you can be already makes you a success.
I celebrate happy moments with you. Every success. Every milestone. Even the most minuscule accomplishment. I am standing with you cheering, happy tears rolling down my cheeks. I also feel the apprehension. Waiting, knowing something is right around the corner, ready to pull you down. I will encourage you to hold your head up in those moments. The hardships are temporary. I will remind you we can still celebrate the good times.
I feel the nervousness you have as you send your child off into the world. Trusting others to be kind in a world that can feel so scary, is not easy. All you can do is pray your child is surrounded by protection and given people in life that will be loving to them and their needs. I pray that prayer with you.
I watch with you as you see children around you grow and reach milestones. I celebrate them with you. At the same time, I feel your heartbreak. I am on the seesaw with you. Teetering between pride and sadness. Knowing your child may never reach those milestones, but still being happy for the other children.
I feel the constant state of chaos in your brain. Feelings that are so hard to express to other people. The back and forth of constant thoughts. Being happy someone can relate to you, but sad they have to struggle too. Being happy for others, but sad at what can’t be. Loving your child for who they are, while wishing they didn’t have to fight this battle.
You are fierce! You don’t turn away when things get tough — you live this life. It isn’t always the easiest, but in its own way, it is beautiful.
If nothing else, know that you aren’t alone. I am walking this path with you. I am here to cry with you, celebrate with you, encourage you, pray with you, laugh with you. I am here if you need to vent, or just need a hug. 
