Monday, March 13, 2017
The one over there feeling sad and alone.
I have something to say to you.
Something you may not be ready to hear, but I think it's important to be honest.
You are going to have many, many, days like today. In fact, you may have several days in a row like today.
However, I need you to know something. Some days won't be so bad.
Some days you will smile, laugh, and feel joy like you've never known. . Those are the days that you hope for. Those are the days that you need to remember on days like this one.
Remember the day...
When your kid said their first word, sentence, or even uttered something that sounded like a word.
When your kid zipped up their own jacket.
When your child used a fork or cup totally on their own.
When your child learned to write their name.
When your kid went a whole day without any outbursts, meltdowns, or rages. No phone calls from school. No bad notes.
When your kid was finally potty trained.
When you realized your kid could read, spell, and do a little math.
When your kid engaged in play with another child.
When another child was nice to your child.
When your child slept through the night.
When your child ate a new food....and kept eating days after.
When your child played and enjoyed it.
When your child met a goal at therapy.
When your child broke their routine and was happy to do something new.
When your child gave you a hug, kiss, snuggle, or told you they love you.
When your child was nice to their sibling.
When the IEP meeting was amazing.
When the phone call went well.
When you were finally able to get services.
Hold on to those days. Why? Because there will be more of them. If you've only experienced one or two of the above, look what you have to look forward to! I know that some of us have horrible days. I know that it's hard to see any of the good in our lives on those days. But one thing is for sure, mama/daddy...you must never let the days get so bad that you lose hope.
I believe our kids, no matter the severity of their disability, need us to hold on to hope. They need to know that we will always be their cheerleader, their advocate, their voice, their helper, and the one that pushes them to be all they can be. They need us to be strong, even when we don't think we can do it another day. The only way to maintain that strength is to hold on to any thread of hope you can find. It is easier said than done, I know.
I know how easy it is to get down. I know how isolating and lonely this journey can be. But, I also know how much joy I feel every single time Drake meets a milestone. The joy we feel as special needs parents is so much different than the joy the parent of a typically developing child feels when their kid rides a bike, or hits their first home run in baseball. We get that same kind of joy when our kid walks up to another child and engages. We get that same joy when our child eats a slice of apple or puts their cloths on without help. Its a different kind of life, but it is ours.
I want you to know that everything is going to be okay. It may not be okay today, but it probably will be okay tomorrow...or next week....or maybe even next year. But I promise you this, you will get past this bad patch and be able to look back and see how much stronger you are. Not only that, your child will be stronger. He/she may be going through this horrible behavior because developmentally something amazing is about to happen. The situation at school may get better once a new year rolls around. The hurtful things your child said may be because they had a headache and can't communicate when something is hurting them. What is happening today does not define what will happen in the days to come. Never forget that you can do this. You're doing it right now.
Hope. Always hold on to it. Let it be like breathing, very much a part of your survival. You cannot make it through those bad days without it.
You. You are an amazing, wonderful, beautiful, advocate for your child. I believe in you. I also believe that tomorrow will be a better day.
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