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some misunderstanding

Posted on Sep 27, 2016 by in Blog | 4 comments

Yes, this must be some misunderstanding. No, it’s not a mistake. Pepper is turning 5 years old in a couple of weeks. No, Pepper is not a baby. Though I can see the reason for confusion. Pepper is not talking. Pepper is not walking. She is not self feeding, or self toileting or pointing, or waving.  The wheelchair Pepper is using looks similar to a stroller, but it is not a stroller. It is a wheelchair. It can tilt back. For naps. For seizures. For recovery. It is not a stroller. Pepper is not a baby. But she is my baby. Not A baby, but MY baby.

I cannot begin to express the sorrow when I hear someone say the words: “But she doesn’t look like there’s anything wrong with her”. Of course there’s nothing WRONG with her. But why would she have to look a certain way to make someone believe that she has disabilities? And what does that look like anyway? I can tell you everything I know about Pepper’s abilities and everything I know about her disabilities, but I can’t tell you if they are forever, and I can’t make you believe it all just by showing her to you. At least Pepper doesn’t look “different”. As if “looking different” is something that really mattered to us. Pepper looks like me. Very much like me. But she is not me. If she were me, perhaps I could help her. Understand her. Who am I kidding? I can’t help myself most days. In fact, most days, I come last, if at all.

How is Pepper doing these days? Pepper has been through some changes: the new room she wakes up in every morning, in the new house where we now live, on the new street, in the new neighbourhood where Pepper and her big brother go to their new school. Pepper has new smiling faces greeting her at the door of the new school, and new routines to follow with new teachers and new hands supporting her, as she cannot support herself. She seems happy, but that’s MY baby. She IS happy. Her seizures have not stopped. She still continues to have them seemingly randomly. We continue to spend sleepless nights laying by her side watching her, holding her, praying for her.

And how are we? We are tired. We are worried. We are scared.  We are spent. But we have each other. Daddy has been busy visiting and exploring his roots. Big bro has been busy on an epic adventure with Daddy, and in his new school, meeting new friends, and learning new ways. I have been busy trying to keep it together. Trying to hold it all in. Trying not to let it burst in a geyser of sadness.

So when you see us parking in the accessible parking, carrying Pepper in our arms as we gingerly place her in her wheelchair. Please don’t misunderstand. The beautiful girl you see in our arms is not a baby, and this is not a stroller, and she is not going to say hello back to you. She probably won’t even notice you’re talking to her. She won’t stand up or shake your hand. Please don’t think us rude. Our little lady is named Pepper. She has epilepsy. She doesn’t have much to say, but she has all the love in the world.

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4 Comments

  1. I love you guys with all my heart. I support you in anything and everything that you may need. I am just a phone call away.

    Rafael S.

  2. Pepper is a beautiful, wonderful. Young lady. Her beautiful smile lights up a room. Iam so very lucky to have had the chance to get to know her. Your family will always hold a special place in my heart.

  3. Love, hugs, lots of them to all. So proud of U my not so little Stef., as well as Hubby and Big brother. Hope to see my Pep. soon. Always in my prayers LJ

  4. That is so well written and expressed Steph how you are feeling. She is a precious jewel in God’s eyes and ours. It’s hard to believe Pepper is already five! You and Cuong are amazing and not everyone could handle this journey that you are going through. Often this can put a strain on a marriage and finances. May God continue to give you strength and joy.

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