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To the Impatient Woman Standing Behind My Child With Special Needs and Me

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I used to be like you. I used to be impatient. I used to be in a hurry. But the little boy I was in line for changed all of that for me.

When you impatiently moved into our personal space to let your hurried presence be felt, please know we sure felt it. When you realized we were there to handle a large order, you said loudly, “I sure picked the wrong line,” as you walked away. You gave me the nastiest look you could possibly muster. I felt myself get defensive as the tears stung the back of my eyes and threatened to appear. I had to remind myself I used to be just like you. (And remind myself I was slightly more emotional today due to the prolonged worry over my baby.)

I realized you couldn’t possibly know these things about my son and me.

You couldn’t possibly know just last week we celebrated his miracle anniversary, the date he was discharged from hospice care.

You couldn’t know waiting is my job now.

You couldn’t know that just today alone I spent a lot of time texting, emailing and speaking to multiple people on his care team to coordinate his extensive needs.

You couldn’t know we went to multiple specialist appointments, including palliative care. Palliative care doesn’t mean end-of-life care like some may think, but it does mean he has a lifelong, incurable and complex condition.

You also couldn’t know one of the reasons it took us longer is because I needed pharmaceutical counseling for yet another new medicine, making it a grand total of 32 doses of medicine every day.

You couldn’t know his entire family had to learn CPR hoping we never need to use it for him, or that we go everywhere with a defibrillator for preventative measures.

How could you know we’re regulars at the local children’s hospital? That most faces we see in the hospital’s hallways are as familiar to us as your neighbors are to you?

You couldn’t possibly know that.

I’m grateful our pharmacy team gives us all the time we need to make sure he gets the best care possible. They play a large role in our lives and do a wonderful job. But I do realize filling his pharmaceutical needs can be time-consuming. I’m sure you can’t imagine what it takes to accurately draw up 32 doses worth of medicine each day. Until he came into my life, I know I couldn’t possibly fathom this.

I’m really not upset with you, dear lady.

While I hope tragedy never impacts your life, I do hope someone inspires you to change the way someone changed me.

I used to live in the fast-paced world, but this little boy of mine forced me to slow down.

Things take time. Waiting rooms and doctors take time. Nail-biting test results take time. Getting medicine filled and ordered takes time. Waiting on him to reach milestones his peers reached a long time ago takes extra time.

You couldn’t know how lucky we feel that he’s even alive.

You don’t how lucky we feel to even know the name of our son’s disorder: Barth syndrome.

How could you know just by looking at him that he still struggles to run and jump? Or by listening to him that he couldn’t talk before he was 4 years old?

You could never  know doing things people take for granted, like enjoying the snow, caused him to have a stroke, and we had to wait some more. We had to wait for him to regain skills that took him so long to reach already. Walking, talking…doing things we take so much for granted took a lot of time for him to achieve (all over again).

His heart may need to be treated with care, but it’s so full of might. You just could never know because he won’t let his challenges stop him. He may be slow, but he never stops.

One thing is for certain — I don’t mind the waiting anymore. It’s what I do.

Things I used to regard as the “little things” are the most important and precious things in life to me now. I believe he and God has shown me strength, courage and patience I never thought I had. And you know what? He is so worth it.

I’m so excited to see what his future holds. I will take all the time he needs.

Kristi Pena.1-001

Follow this journey on Facebook at Crusade4Christopher.

Originally published: November 11, 2015
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