Say Something!

Posted by on Sep 28, 2015 in Down Syndrome | 8 Comments

Different (3)

Well, it happened.
I’m not proud.

Jack stood in the center of his room with tears rolling down his face. We just finished the 15-minute nightly battle of me injecting chemo down his throat followed by another painful teeth brushing war. The side effects of chemo have nearly destroyed what’s left of his baby teeth. Every stroke of the brush is a reminder this shit is far from over. I know it’s normal to feel some sort of dread for this daily routine, as most 5 year-olds don’t particularly enjoy bedtime. For me, I hate this time of day. No, I despise this time of day. At least up until we start reading that is.

Is it weird I look forward to the amount of days left in his treatment to match the number of stairs I count every time I put him to bed…as if that means some magic number? I guess it’s one of the many coping mechanisms to help pass the time.

Then again, unlike other parents, I’m grateful to have a light at the end of the tunnel. I feel selfish and a little guilty when I throw these self-pity tantrums. Other people don’t have that luxury. Other people have it much more difficult than us. Other people don’t have an end in sight. Other people struggle to put food on the table. Other people don’t have access to doctors and modern medicine, and parents are forced to watch their children die in their arms over preventable diseases. Other people simply don’t have an option. Even though I know these things, it doesn’t make it any easier. Sometimes I think this sort of perspective makes it worse.

Before I even begin to approach Jack with syringe in tow, my eyes are already squinting. My forehead seems to have grown a few wrinkles and I can feel the scowl on my face. I’m angry. No, I’m pissed off. Wait- No maybe I’m sad? Is it guilt? Or is it I feel cheated in some way? Probably all of the above.

Jack was now hitting himself in the face and screaming at the top of his lungs. I leaned in to give him a hug and pulled out the typical, “take a deep breath, Jack.” He kept trying to leave the room, obviously frustrated with something. I gently grabbed his hand, attempted to bring him back to the bed and asked him to pick out his favorite book. He flopped to the ground and kept shaking his head no. This went on for several minutes. Finally, I lost it.

I screamed at Jack- “TELL ME WHAT YOU WANT. TELL ME! FUCK!!! FOR THE LOVE OF GOD….JUST SAY SOMETHING!

The house went silent. Jack’s crying abruptly became an awkward silence. We stared at each other for some time. He didn’t pick out a book nor cry again. He walked over to bed, pulled the covers over his head and went to sleep.

Guilt rushed through my body from head-to-toe. The pit in my stomach seemed to grow with every breath. Everything about me wanted to take it back. It was as if he just said everything I never wanted to hear- “Dad, I’m trying…cut me some slack.”

or was it-

“Dad, I’m trying but the words won’t come out. These drugs you give me everyday don’t help my speech delay either. The protective germ bubble you and mom force me to live in doesn’t allow me to go to school, interact with my friends, or be a normal kid either. You think I asked for this sort of life? You think I want to put you, mom, and Charlie through this? You think I don’t want to talk?”

I was crushed.

After all, it’s not his fault he was born with Down syndrome, diagnosed with Acute Lymphoblastic Leukemia (A.L.L.), and can’t talk (not yet at least). He’s probably more frustrated than I am and deserves more self-pity moments than I allow. On the outside I’m hard on Jack. I try to treat him like I treat Charlie and set high expectations. I won’t allow him to throw in the towel. Giving up has never been an option in our house and I don’t ever plan to change that. Me losing it on him was like throwing in the towel, and that’s inexcusable.

On the inside I’m crying. I’m heartbroken for him. Somehow this life has cheated him in more ways than one. I continue to cheer him on from the sidelines, but keep watching my boy get treated like a punching bag. I helplessly stand-by and wait…. and support…. and encourage…and wait…and hopefully one day he can tell me everything he’s wanted to tell me.

And I’ll respond with, “I’m sorry.”

 

8 Comments

  1. Brian
    September 28, 2015

    Good Post John. Heavy. Everyone hug your kids a little harder tonight.

    Reply
  2. Sarah
    September 29, 2015

    You don’t know me. I have somehow managed to stumble upon your blog and the amazing things your wife does as well through your sister in law. 🙂 I’m so glad I have.

    I’m in special education as a teacher and a former admin. I’m also a mom of 2 little ones.

    I hope you know you’re inspiring. Your honesty is incredible and as a parent you are clearly excellent.Thank you for posting. We all lose it sometimes, but really, you’re an awesome dad- even if it may not always feel like it.

    From one parent to another.

    SJ

    Reply
  3. Lynn
    September 29, 2015

    So well written I could feel all your emotions and Jacks emotions.
    You are a beautiful person.
    Will be including you and your family in my evening prayers for an easier bedtime each night.

    Reply
  4. Nicholas
    September 29, 2015

    John,
    Your an inspiration. I and so many people are rooting for Jack. We believe you guys will win this battle. God bless you and your Family.

    Reply
  5. Laura
    September 30, 2015

    John
    Reading your post not only made me cry but You just gave me the kick in the but I needed.

    Reply
  6. lani haracz
    October 1, 2015

    This may sound trite, and you don’t deserve that, but you are in the minds and hearts of many.

    Reply
  7. Lisa B
    October 17, 2015

    I am ashamed to admit I have ‘lost it’ too, more than once. My son has a genetic condition, ASD and speech delay.He is 10. You are doing great, it isn’t an easy path to walk, and sometimes we will stumble, but hopefully never fall over that edge. Wishing you and your family well, from this SN family in England.

    Reply
  8. Maria
    October 19, 2015

    Great post. Thanks for being so honest. I’m dealing with a new diagnosis for my baby and I find it hard at times ‘to keep it together’. It’s nice to read I’m not alone in that way.

    Reply

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