I’m sorry this is your reality. I’m sorry you feel helpless, sad, angry and what must be a maddening feeling of not being in control of your own body.
Today when we accessed your mediport for infusion, you fought against us – as usual. But what broke me was when you cried in my arms afterwards, and you said you were sad and you didn’t know why.
You see, usually you can be distracted and pop out of the fit, and are ready to play or watch iPad. But not today.
I’d like to venture a guess why you were sad. You are being robbed of your childhood. You are learning that life isn’t fair. You know what it’s like to be different from your peers. You are made to do something that terrifies you every week. And you are only 6 years old. That’s a hell of a lot to process when you are still learning the difference between long and short vowel sounds.
It’s a crazy juxtaposition that we had such a great day together at infusion. We played on two different video game consoles, did one homework assignment, played with alien slime and Bunchems. You created a construction paper jack-o-lantern with Grandma. Then you and I played soccer, a bit of football and 500 Dead or Alive (where you continually made up rules) with Papa. You were so full of life and light. We had fun today.
This evening after infusion you were FULL of energy! Enough energy to be preoccupied with a ball to the point that communication with you was pointless. You were energetically pushing your sister’s buttons. Threats of “no bedtime books” was the only way you’d get your PJs on.
But then it happened again. As you were trying to fall asleep, you were sad and didn’t know why. So instead of struggling with sleep and the thoughts in your head, we went out to the couch and joined Daddy in front of the Avalanche game, where you finally unwound and gave in to sleep.
My heart constantly hurts, watching you navigate the tough parts you’ve been handed. But my heart fills up watching you proudly practice handwriting, pretend to be the referee in a hockey game, do commentary as Campbell jumps into a pile of leaves, and play the drums (as well as a million other things).
I pray that the things that fill up my heart, fill up your heart too, and that they can pick you up when you can’t put your finger on what’s sad. I will find tools for you to deal with these feelings – your mama needs to refresh these tools too.
Sleep well sweet boy. Enjoy those hockey dreams, for morning and the rush to get to the school bus will be here before we know it.
3 thoughts on “My broken-hearted note to Cooper”
Hi Chris, as usual so we’ll written. Nysa and Cooper are more or less of the same age, and so I can see that Nysa goes through similar feelings. Recently we learned from the Dr. that kids like Nysa experience self realization at this time, i.e, they realize their difference from other kids. Their mind is currently trying to adjust to and accept their condition. We are told that this mood would change and they would be far more accepting of their own self slowly. However these feelings might recur during their 9-10 yrs of age. At least we now know what to expect, and be better prepared.
Hello dear Tippett family! I was going through my wallet and came across a card with sweet cooper and momma on it. It’s been quite some time but you all are always in my thoughts! Campbell with her goofy laugh and silliness and happy spirit. And dear and darling Cooper with his gentle smile and his warming hugs and joyous laugh! I recently found the scarf your mother crocheted for us all. What a sweet gift that was!!! Hope you all are well and hopefully we get some snow to play in soon and to do some sledding! Your old sunflower teacher, Simen!
Simen!! Yay! Sending you big hugs! XOXO