Site icon Something Worth Fighting For: Life Goes On

A serving of sadness to go with your cake

Tomorrow is my sons 5th birthday. Although, honestly, he seems so much older.

He is so much like me, in both the good and the bad ways. His emotional intelligence is higher than the majority of adults that I know. He is kind and compassionate and empathetic and loving.
He is becoming the best brother and teacher to his younger brother. His thirst for knowledge and learning is unlike anything I’ve seen in a kid his age. And he says the most profound things that give you such an insight to who he really is. He is gentle, and kind, and loving, and encouraging.

At times he can be quite frustrating and challenging…but what 5 year old isn’t?

He has been looking forward to his birthday for weeks now, counting down every day, and each morning asking me how many days are left.

My son is a special kind of kid. I know everyone thinks that about their kids (and they’re probably right), but my son really is….quite unique. He’s something to be proud of.

“The first step is calming down.”
He will often say that to me and my husband when he sees us getting frustrated. It’s something that we taught him, and he has put to good use. Just within these past few months, he has grown up and matured so incredibly much.

Like myself and my 3 year old, he also suffers from a severe neuromuscular disease. His life is not easy, and he has some significant struggles in his life. His feet are extremely deformed with contractures due to the constant tightening of his muscles. We spend hours, every single day, in multiple therapies. He has to work harder to perform the same basic functions that come easily to you or anyone else.

But he doesn’t complain. He doesn’t ask “why” or give up. He just adapts. Much like my 3 year old…Christian has also found unique ways to live in a world that isn’t always suited for psychical limitations.

This morning, he requested that I don’t wrap his presents. He told me that it was too hard for him to open them on Christmas. My heart broke for him. To know that even unwrapping gifts is challenging for his hands…it hurts. There’s no way I was going to give him unwrapped gifts, though. But I did agree to use barely any tape.

Birthdays are hard. With our diagnosis, the truth is…we just don’t know how long we’ll have with them.

I wish could be excited about his future. Because I know that this child would grow up and become something incredibly important. He is the kind of person who would change lives. Every person that knows him can feel the energy coming off of him and it’s just…I wish I could be excited. But I can’t be.

In this case, when it comes to my kids….the future doesn’t excite me. It terrifies me.

Birthdays will always come with a serving of sadness. But tomorrow, we will celebrate him. Because he deserves it, because he is special, because he is my worth all of it.

My husband said it best this morning:
I’m proud of you, son.

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