She puts on such a brave face.
Such a sweet, sensitive heart she has. Neither of my boys seem to posses that thing that makes you sensitive of others. But she has it in spades. She’s always thinking of others. Always ready to cuddle. To nurture. To love.
But I knew. I knew behind her big blue eyes and dimpled smile hid a broken heart. But she was thinking of me and trying desperately not to make me sad. She hates to see me sad. And so she smiled even though I had failed her big time. I felt the guilt and grief and sadness climb up my throat until I had to catch her and make her see how sorry I was. Apologize on my knees. Until she knew to her toes that I meant it deeply. Until any possible root of bitterness could be plucked from the soil of her tender heart. To God, I don’t want her to grow bitter with me. With him.
Having a child with significant special needs impacts the whole family.
And last Saturday, at her American Heritage Girls ceremony, she missed out on receiving extra badges as a direct result of her brother’s care sapping her mother’s energy.
It was not her fault. She worked hard for those badges. She earned them.
I should have ordered them.
But somehow…in all the chaos of these last few months…I missed the order placement period. And she missed out.
The thing is…
she had already missed out before. I vividly remember promising her at the middle of the year ceremony that next time I would get it right. Next time she would have those badges that she worked towards. I would NOT let her down.
Talk about a parenting fail.
I pulled her aside and with tears running down my cheeks begged her to forgive me. She promised it was okay. That she understood. Her blond hair and blue eyes looked so innocent and sweet. But she’s eight. Can an eight year old heart really understand how much energy leaks out of me every time her brother has a seizure or an IEP meeting? How half way though the day…I’m toast. And ready to just curl up in bed with a book. It feels like I’m always tired anymore. Ordering badges are the last thing on my mind. Can she understand that and be okay with me pouring myself into finding new treatment options and talking to specialists to help her brother…but forgetting to order her badges? I cried because my heart broke for her. I cried because sometimes my heart groans for the day of Redemption fiercely. I cried because I’m mad at myself. Always, I’m reminding myself that I’m a mom of more than one. And yet that one takes so much energy to parent. I hugged her hard because I wanted to squeeze any doubts that she’s not as important to me as he is right out of her. I didn’t want to let her go because I’m afraid that someday she won’t want to come back. That she’ll look at my choices and judge them as partial. I fear that because I know my own heart so often is bent towards bitterness. And I can’t bear the thought.
So I hugged her tighter. Until she said, “um, mom, I can’t breath” with a little laugh. Which made me laugh too. Because not only does she have the gift of compassion…she also has the gift of comedy. Her voice was dead pan hilarious. Against every fiber of my being, I pried my arms open and let her run off with her little friends.
I worry about her tender heart often…
But I have hope too. I believe in Providence. I know that we are not a family by chance. We were chosen to be together by a loving God for His glory. And I believe that He’s using Trevy shape all of our hearts to look more like His. Missed badges and all.
It also helps when I read thoughts of older special siblings like this one…
“growing up with a special needs sibling equips you with a unique sense of humor, a special ability to marvel at the small beauties in life, and a boatload of patience!” -- Brittany, SpecialSiblings.com