We’ve all heard the story of the turtle and the hare. The hare is very confident of winning, so it stops during the race and falls asleep. The turtle continues to move very slowly but without stopping and finally it wins the race. The moral lesson of the story is that you can be more successful by doing things slowly and steadily than by acting quickly and carelessly.
In the case of my happy turtle (aka Peter), it isn’t a race, it is just a way of life. Having, myself, lived life more like the hare, I have to keep learning from my little turtle. Lessons that are not always easy, but necessary.
My happy turtle is slow, even by turtle standards. Peter is taking the slow and joyful path through life. A path slower than most of his peers with Down syndrome. A path he enjoys. I don’t know a kid that can laugh and smile as much he does in a single day, let alone day after day. Peace and love my friends, peace and love!
But as happy turtle’s mom, learning the lessons is hard. While I am a task oriented with some degree of analytical thinking and enjoy the ability discuss complex topics, I have found that when it comes to Peter I am first mama bear, second caregiver. This means that when given information regarding Peter, I react first emotionally and then mentally. This has been true at every appointment, every school meeting, every therapist evaluation, every clinic visit, and so on. This week was no exception, and in the area that hurts the most. Speech.
Yes, most individuals with Down syndrome have some degree of speech delay and/or issues with intelligibility of speech. However, Peter’s speech issues are broader and deeper than most. A doctor once broke it down as 10% of kids with Down syndrome have speech disorder #1, and 10% of those have speech disorder #2, and then less than 10% of those have speech disorder #3, and so on. Peter tips the scales with at least 4 and maybe growing. Following the percentage logic, Peter truly is one in a million!
After three weeks of re-assessment, Peter demonstrates a motor planning disorder, a motor speech disorder, a phonological processing disorder, immature language skills, limited receptive language skills, and very limited expressive language skills. The test used was a pre-school test because his speech is so far behind that a chronological aged test would have been a waste of time. At nearly 9 years old, Peter actually “failed” pre-school language test, and falls in the 0-2 year old range for speech.
Cue a broken heart.
Here is where the mama bear vs. caregiver comes in. My caregiver mind already knew all of this, continues to work with therapists to best expand Peter’s speech opportunities, celebrates the successes, and focuses on potential. My mama mode reacts with a broken heart, and quiet tears alone in the safety of my van. Sometimes I transition rapidly from emotion to brain, but other times I need space and time to grieve. Space and time to grieve the loss, digest the situation again, and allow myself to face my own fears about what this means to Peter’s life.
Why does it hurt so much? Maybe too many younger years taking magazine quizzes with friends so that we could identify what bucket we fell into. Some crazy need to “know who we are” and to “find ourselves” is now coming back to bite me in the rear. Forget that, it is not biting me in the rear, it is stomping on my heart over and over again.
On one hand I want to know. I can’t live life on an “as need to know” basis. I want it all! Give me all the data, all the info, all the buckets. More the more better. Let me put the pieces together, create a big picture, and solution my way through the maze to a happy end. The project manager in me must find a solution.
My happy turtle is teaching me that I can’t brain my way through the hard parts. That sometimes all the pieces don’t come together to form a big picture. That sometimes there just isn’t a big picture, but a series of smaller pictures that may or may not tell the same story. He is teaching me, over and over again, that sometimes there just isn’t a solution. Sometimes all the quizzes put us into buckets we don’t like, our only choice is how we react to being in these buckets.
I don’t know that Peter has reached the cognitive level to understand that he is different and struggles in ways that those around him don’t, or if he has realized that and just doesn’t care because the good stuff is just way too good to be detracted from by the struggles. Either way, he choses to wake up every day and love his life, to love those around him, to embrace the excitement of life – even with the mundane daily tasks. How can one truly celebrate the school bus coming, every day, as if it were the first day it ever showed up? The bus has come every school day for three years…..yet the excitement is still there every morning. “Wo-hoooo! I get to ride the bus today!!” Every morning he turns to hug me goodbye and say “I la-la-la you” (Peter speak for “I love you”). And when my mama heart bursts with joy, my arms want to hug for just a bit longer, and my “I love you” back becomes “I love you too, I love you sooooo much! Oh my goodness Peter, I just love you soooooo much!!” Then I get it. At that moment I get a small glimpse of the beauty in which Peter sees life in every moment. It doesn’t matter that my head knows the bus will come again tomorrow, and I get to say goodbye again. My mama heart lives that moment as it if were the first and last time, and I want to hold on to that love and joy.
All this comes back to the words of wisdom from a nurse when Peter was a mere tiny little newborn with more tubes and monitors that I thought a tiny body could handle. As I lamented that in his few weeks of life Peter had already gone through so much, and it seemed so unfair, she responded with, “This isn’t hard on Peter, this is only hard on you, he knows no life different than the one he is living and he is happy.”
Some of us mamas of kiddos with special needs feel the pressure to be strong, pulled together, and emphasize the joy our kids bring us. Lest we be judged as unhappy, unable to handle it, or an example of why life is better without kids with special needs. The reality is that having a kiddo with special needs is in many ways no different than being a mama to a typical kid – there are ups and downs, joys and frustrations, mistakes and moments of grandeur. There is life. Simply put – there is life. Gloriously messy, and uniquely ours.
So yes, right now I grieve for what I believe Peter has lost – again. I face my darkest fears of what this might mean in his life. I let the tears fall. But when the bus comes back this afternoon, and he jumps off the top step and into my arms, I must let my heart be in that moment. That moment when he jumps at me like it is the first and last time he will do that, and with full confidence that I will catch him. That moment of joy at the sense of flying. That moment where he is simply happy to see me, will chase the bus up the road to the next mailbox, and then saunter back down to our driveway assured that all is well in this world. Why? Because sometimes getting to experience the same joys each day isn’t boring, it is reassuring that no matter the struggles, we know what joys await us tomorrow.