Editor’s note: This is a guest post by Kelli McIntosh for a summer series highlighting great writers who focus on disability.
It was a typical morning. The sun had not yet risen and I was up before everyone else. I was enjoying my cup of coffee while sitting in my favorite spot in the living room, soaking up the quiet time that I wouldn’t get again for another 24 hours. I knew the kids would be waking soon but I wasn’t quite ready to get up and officially start my day. And then I heard footsteps and knew Kaylie was on her way down. But when I looked up, it was Kyle who skipped into the room. It was Kyle who opened up his own bedroom door and walked down the stairs. It was Kyle who said, “Good morning, Mom!”
I couldn’t believe my eyes and ears and I was crying and hugging Kyle.
Then I woke up.
As I looked around my dark bedroom, I wondered if it had really happened. Did Kyle talk? Can Kyle really open doors and walk down steps on his own? So many thoughts in just a split second, but then I knew it had all been a dream. I closed my eyes wanting to get back into that dream. I was crying. I wanted to hear Kyle’s sweet 7-year old voice again.
I wanted to hear him call me “Mom” again.
This wasn’t the first time I’d dreamed that Kyle could speak. It was just one of many over the last seven years. The dreams are always of an instant miracle and we are all amazed and crying with joy. And I’m not the only one who has had dreams like this. Kyle’s grandparents, his aunt, Kaylie, and even Kyle’s babysitter have had dreams where Kyle can speak.
I’ve even let myself daydream about it. I’ve closed my eyes and imagine the what ifs.
What if Kyle could dress himself and put on his own shoes and brush his own teeth?
What if Kyle didn’t need me to change his diaper?
What if Kyle played with Kaylie like she so desperately desires?
What if I sent the kids out to play in the backyard while I read a book and glanced up to see them chasing each other?
It makes me think of what my life would have been like if it had been up to me. But I don’t daydream like this often and I don’t dwell on it too long, because it’s not up to me.
And what about Kyle? What does Kyle dream? I see the way he looks into my eyes and how he longs for me to understand what he wants so badly to tell me. I have seen his bites of frustration when we don’t understand what he’s trying to communicate. Does Kyle dream of being able to talk to me? Does he wake up from his dream and wonder if he can? Does he, like me, want to close his eyes again and live in his dream?
But we can’t live in our dreams and daydreams. The life I live now, the life Kyle lives, is reality. But reality is painful sometimes, isn’t it? If Kyle had been born without disabilities, it would be something else that I would dream. My dreams are of perfection. Of heaven. And I’m thankful that heaven will be my reality one day.
In the meantime, I wake up and I live my life. Does that mean I have to live each day unhappy with my reality?
Absolutely not.
Because I am choosing to be content.
***
Kelli McIntosh is a wife and the mother of two children. Her nine year old son, Kyle, has special needs; she blogs at Not Just Anyone to share how she has learned to accept her son’s diagnosis while still holding on to faith and hope. She encourages her readers to focus on life’s unexpected circumstances with a positive perspective. You can connect with her at Not Just Anyone, Facebook, and Pinterest.
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Please teach Kylie to spell words using a letter board. Thereby he can communicate his thought, his need, his wishes, his dreams. Everything. The essence of talking is to communicate. Some people can verbally communicate. Some people can nonverbally communicate through spelling words using letterboard.
We can see from videos on youtube how to teach nonverbal communication to Special able children. It takes a lot of hard work. But once the child master it, it open up the window of his world. We will be surprised to know how much things are stored inside his mind.
You are right! When Kyle was just a few years old, I used to think how important it was for him to “talk.” Now, I see the importance of just being able to “communicate,” whether that is through speech, signs, ipads, letter boards, etc. Like you said, it takes a lot of hard work, but so worth the effort to try all different types of communication. We have taught Kyle some signs (he is able to do several frequently), how to use PECS, and he is currently using a speech app on his iPAD, which has been the best form of communication for him. I have also researched and learned a little about the letter board as well. We’re exposing Kyle to as many forms as possible to see which one is best for him. Thank you for your input! 🙂
Kelly, my son who is also non-verbal has come to me in dreams and thanked me for trying so hard to help him communicate. I do believe we communicate through dreams what we cannot verbalize during the day. Women especially are sensitive to the needs of their children and I believe we have the ability to pick up on our children’s needs.
The dream you had is so neat; I love that he thanked you! With all the time we spend working with our children, we can definitely pick up on their needs even when they can’t verbalize them. Thank you for sharing!
I dream about Jason all the time. I had a dream recently I was saying goodbye to him and he hugged me. In my dream I started crying and suddenly woke up from my dream hearing the song Circle of a Life from my alarm radio.
I layed in bed trying to interpret my dream. You see, Jason passed away nine years ago, he was quadriplegic and was unable to hug me and his favorite song was the Circle of Life.
I believe this is his way of contacting me through my dreams. It is his way to let me know he is no longer disabled and he is very proud of my accomplishments with the book I wrote telling his story.
Wow! This gave me goosebumps! I am so glad that you have your dreams, and this dream in particular, to hold and to cherish. The book you wrote about your son must be beautiful!
I could relate to this article. I have dreams about miracles all the time. In fact I wrote something similar last year. (http://where-are-my-mary-janes.blogspot.com/2014/10/reasons-not-to-hope.html?m=1) Thanks for sharing your story. I’m always surprised at how similar our stories can be although probably vastly different diagnoses.
Thank you for sharing your blog post. I definitely can relate to your post as well, wondering why I’m so worried about things when my son is happy and content overall. The questions you asked yourself in the last paragraph of your post are the exact questions I’ve asked myself. Our stories are similar!
This touched me to the core this morning. I felt like I was reading my own words, my story. My son is almost 4 and I’m beginning to focus on his ability to communicate rather than talk. That’s a hard transition but a necessary one. Finding a new normal, easing up on the grip on my old dreams for him…it feels like failure sometimes. But it also feels like I’m finally succeeding in finding my footing as Caleb’s mom. As the mom he needs, instead of the mom I wanted to be.
Thank you for writing into my life. You did it beautifully.
You are welcome, and thank you for sharing a little of what you are going through, too. Kyle is 9 now and I thought back to when he was your son’s age. I wasn’t in a good place at that time. I was depressed and not accepting of my reality, of his disabilities. Once I got through the cycles of grief (which sometimes I still cycle through) and got to acceptance, my life changed for the better! I am so glad you are getting to that point, too. And once I started focusing on Kyle’s communication rather than verbally talking, Kyle and I both made better progress!
This post made me cry. I have a son who is 15 now. He suffered a TBI when he was 21 months old. And he was left severely disabled. But with this change in our lives I have learned alot. But I also have many dreams of him being able to do things he normally can’t. I wake happy but quickly realize it wasn’t real. I also look at his pictures of before his accident wonder what he would be like if it never happened. I look at kids his own age and imagine he could be doing this if he never got hurt. I guess the hardest things now are explaining things to his sister and listening to her and how much she longs to have a big brother with no special needs. But she understands what happened and she loves him alot. Also the thought of what or who will take care of him when I no longer can. That is the one thing that scares me.
Brandy, I’m right there with you. I have every single thought that you wrote in your comment. Kyle has a younger sister, too, and I write on my blog about their relationship and the conversations that Kaylie and I have about special needs, acceptance, and faith. Like your daughter, Kaylie also longs to have a brother who can play with her like her cousins do. And about the future…my husband and I talk a lot about how we are going to take care of him and what will happen when we’re gone. It can be scary, and it is definitely not easy or fun to think about. I know how you feel; the best thing we can do, at least to ease the “scary” part, is to plan and prepare the best that we can now. Thank you for sharing your story.
Thank you for this.I understand these dreams exactly. My son lost his ability to walk at age 3 and is paralyzed waist down from cancer I often have these very vivid dreams in the same way. We are all gathered crying and happy and in those dreams I feel like its real this time and then I wake up. I wake up catherterize,change him and give him his meds. Dwell on the dream for a bit then get back to reality . I think of his feelings and how this is affecting him as he’s almost five now. Its hard and its something difficult to explain. I love him so much and I do feel blessed everyday he s still with us and that’s what gets me through it. Thank u again its always nice to relate.God bless you and your wonderful family.
Thank you, Crystal. You’re right…all of our feelings are difficult to explain but since I experience something similar, I know exactly how you feel. And you mentioned the most important thing of all: the love that you have for your son. That’s enough to keep us going and I’m sure your son knows your love and is blessed to have you as his mother!
I have a 4 year old son and he was diagnosed with Duchenne Muscular Dystrophy at the age of 2.5. He does most of the things that other kids his age do but slowly. But his disease will slowly rob him off all his function until he succumbs to it. He will stop walking and loose strength in all his muscles eventually. And by eventually I mean in his late teens. I enjoy his hugs as I think they are so precious. Later he won’t be able to hug us. I hope that God gives all of us enough strength and grace to face what is coming up in near future.
I read your comment twice and just cried. I can’t even imagine what your son, you, and your family must be going through. What difficult emotions you must face on a daily basis; I am so sorry. I am glad that he can hug you now and when he can’t, I hope you can hold onto memories and the things he will be able to do as each year passes. I can’t even pretend to know the words that would provide encouragement to you. I wish life wasn’t so hard. Thinking of you and your family!
I have twin boys with Down Syndrome, but they can talk. But, my neighbors have a son who can’t talk also. Whenever I go out into my backyard, I can hear the movie, “Mulan” playing. It’s his favorite, and he loves watching it all the time. He tries to communicate with us, but he gets so frustrated sometimes. I’m glad that he has Mulan to watch, because he can express how much he loves it by acting out fighting scenes sometimes. He is such a joyous and happy neighbor, I wouldn’t want any other neighbor.