Are You Discouraged? Remember the Moments
Raising a child with special needs requires perseverance. You know that. I know that. And Rachel Cordeiro, a new guest blogger at DifferentDream.com, knows it, too. She’s the parent of three children, one of whom has special needs because of her premature birth. Today, she blogs about how she fights discouragement by remembering key moments in the life of her daughter, Camelia.
Moments
I pour every part of myself into working with and helping my daughter because I want her to have the best—to be her best. Simple tasks often prove to be complex, and facing obstacles and challenges has become routine.
It’s tiring. It’s hard. The days are long.
Relief showers me at the end of every day; but as I whisper a prayer of thanks to the Lord for helping me, I find that my prayer of thanks quickly turns to a cry for help!
How am I going to do it all again tomorrow? I wonder. Is all my hard work making a difference? Does she understand what I am teaching? How much of it is she retaining?
As I pillow my head, many questions and worries fill my mind. I get discouraged. I feel like giving up. But then I remember the moments. Moments sprinkled throughout weeks—sometimes months—of difficult days. Simple, yet encouraging. Quiet, yet speaking volumes to my heart.
There is one such moment still encouraging my heart today.
My daughter, Camelia, was three years old when she spoke her first words. I love you was not among them. She never said it on her own, nor in response to when I told her. She had words, but was unable to express or communicate her feelings. My heart ached for the day when she would answer in return!
In the meantime, I had observed how much she enjoyed holding my hand. (Because Cami is visually impaired, she sees and explores her world primarily through touch.) Holding hands seemed to provide the security and comfort she needed but at a distance comfortable for her; she often preferred it to hugs.
Slowly, an idea formed: I decided to say “I love you” as often as I could while holding her hand. In order to tangibly reinforce the message, I also decided to squeeze her hand while simultaneously speaking each word—“I… LOVE… YOU.” I stated each word expressively with each gentle but firm squeeze.
Though she did not reciprocate the gesture, there were times I thought I saw a smile slowly forming at the corners of her mouth. Does she understand my love? I questioned. Still, I continued with the hand-squeezing I love yous.
Then, when she was around six years old, the moment came. One Sunday evening, while sitting together in church, her small hand rested gently in mine. As I quietly listened to the sermon, the moment was what I considered to be ordinary.
Suddenly, I felt it. Three small yet unmistakable hand squeezes.
I had to stifle the sob that wanted to escape my throat as tears welled up in my eyes. She gets it! I thought. She gets it and she’s letting me know how she feels! A simple moment turned extraordinaire. A moment which breathed hope, providing an answer to the question I desperately needed to know. No amount of my work and effort had been in vain—nor will it ever be. That moment made everything worthwhile, dimming every heartache along the way.
Today Cami continues to learn, understand, and express what she is feeling in her own time, in her own way.
Are there still hard days? Yes.
Do I still get discouraged? Often.
But then I remember the moments. Unexpected. Beautiful. Rewarding. Moments.
How Do You Fight Discouragement?
How do you combat when discouragement threatens? Please, share your strategies since it’s a battle all parents of kids with special needs fight from time to time. And come back tomorrow when Rudy guest blogs about parents of kids with special needs can partner together. See you then.
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Filho, I pray everyday and whenever I remember you and your family during the day. Remember, you are not alone in this journey! I always say to Cami that she is beautiful and that I love her very much, and then she smiles and answers me “I love you too”. I feel so grateful for that! I wish I could communicate better with her but the little that I have is worthwhile. I pray God for encouragement for you and Rachel and I have a special prayer to God and He knows what it is. Love you son, don’t give up because God can do anything that He wants to.
mom.
Keeping cameras handy is hard for any family, but doubly so if you also have to keep g-tubes, wheelchairs, hearing aids and/or other special needs stuff handy. If you forget the videocam, don’t worry. Some of my memories of our baby from 30 years ago are as fresh as ever.
Jolene
Thanks for your tip, Laurie. Daily walks are a sanity saver for me, too.
Jolene
Rachel has a beautiful way with words, doesn’t she? I’m glad she touched your heart, Susy.
Jolene
This was beautiful. Txs for sharing. And a what a neat community of support for parents with special needs kids. Touches my heart. It truely does.
A physical break often helps me. Just getting away for an hour or two to be in the fresh air, not being a care giver or thinking about the issues at all. Remembering all the good moments is another great one that we use around here often too.
My heart is touched once again. What an encouragement. Very neat as well this site. A big support group. Txs for sharing Rachel.
This is such a beautiful post. I also fight discouragement by remembering those key moments in my son’s life. I wish I had more of them on video, because I find that sometimes I just need to see it again. I try to remember to always keep that camera handy!