Less Than Thankful, More Than Grateful
By Cathy Jameson
This picture of my boys was taken a year ago. Ronan, in the green sweatshirt, stopped moving long enough to sit down and look straight into the camera. Sitting proudly next to Ronan is his younger brother, Little Buddy. Little Buddy, who was also injured by his vaccines but has recovered, plays more of a big brother role than Ronan is capable.
Little Buddy prays daily for Ronan hoping he too will be free of his vaccine injury. He hopes that Ronan will be healed so that he can talk and so that they can play together. With a heart bursting with pride, love and devotion, Little Buddy has enlisted his classmates to pray also. Together, they offer special intentions for Ronan’s health and healing. I need to take a lesson in Little Buddy’s devotion and perseverance because lately, I am having a hard time seeing too many positives in Ronan’s situation.
I certainly have some things to be thankful for today, but I would be remiss if I didn’t admit that I feel much more worry than thanks. We’ve had to handle some uncomfortable issues lately: wandering, an increase in seizures, stagnation of skills and negative behavioral concerns.
I have been less than thankful for the many reminders of what’s making Ronan’s life more difficult. Those difficulties, and the reality of Ronan’s vaccine injury and autism diagnosis, have me riding an emotional roller coaster. Time heals all wounds, though, right?
If I give it a few days…
If I shake the worry while looking for a bright side…
If I let some of the nagging go…
If I hope for the best…
I’m working on that. I really am. I’m pushing through the tough stuff. I’m praying for comfort. I’m hoping my bad attitude isn’t affecting my family. I’m waiting for peace to envelop me as it used to. How I miss that peace and the confidence it brings.
Hope. Healing. Confidence. Peace. I don’t have those in me at the moment, but I know someone who does. While I muddled through another wave of negativity last week, Little Buddy surprised me to the point of being speechless. As Ronan suffered another seizure, as we dealt with another delay, as we maneuvered around another huge road block to acquiring adequate support, Little Buddy popped into the kitchen with a whirlwind of excitement. I don’t know what prompted his excitement, but he reminded me that getting through life successfully depends on your attitude.
Rushing over to me, Little Buddy asked, “Mommy! What do you think Ronan will be when he grows up?”
Grows up? I thought.
I looked at Little Buddy and then at Ronan. Grows up?!?! Is he for real?
But before I went into the litany of reasons why it feels like Ronan may never truly “grow up” as Little Buddy will, I bit my tongue. I bit it hard.
This sweet, beautiful boy whose own vaccine injury stole his voice for three years. This child who went through digestive issues that would bring a grown man to his knees. This child, who overcame what doctors refused to admit happens. This child who bounded into my kitchen with a thought that I can barely picture in my head. This child who has no idea I feel <this> close to wanting to quit. This child who believes in hope, in miracles, in Ronan and in Ronan’s future had the gall to interrupt the anger, sadness and disappointment that I had been carrying for weeks and weeks.
Deflecting the question while trying to not burst into tears, I replied, “Oh! When he grows up. Huh.” I waited a few seconds and said, “Little Buddy, what do you think Ronan is going to be?”
“Well, Ronan’s really good with electronic games, and he likes to play on the iPad. And he loves the Wii, and he is trying to play on the XBox….maybe he’ll be an engineer!”
What an innocence brimming with possibilities. I held back tears as I could see how happy that thought made Little Buddy. Hugging him, I said, “I love that you love him so much. You are the most amazing brother ever. Ronan is very lucky, you know.” He quietly replied, “I know. I just love him, Mommy.” Then he flashed a goofy grin and ran back to where he was playing. As he went around the corner, I burst into tears.
Instead of looking at my situation with disdain, because there are days that that is the only way I view how things have gone for Ronan, I wondered if I could peek at life through Little Buddy’s eyes. If I peered at Ronan the way Little Buddy does. If I changed my attitude the way Little Buddy already did. Maybe I could see past what Ronan can’t do and concentrate more on what he can. Maybe I could think about what he will one day get to do also. If I did that maybe I could remember that some of this is temporary. I could then focus on what is in front of me. I could believe that an independent future is possible for both of my boys. What a moment it was for me to think about all of that, and what a future gift I would truly be thankful for.
Little Buddy went from being non-verbal to being a believer. He reminds me that anything is possible. With brotherly love and a connection like no other, he has an eternal spirit of hope and of thanksgiving. I am thankful for him and for the spirit he has. More than anything, though, I am more than grateful that Little Buddy reminds me to believe.
Cathy Jameson is a Contributing Editor for Age of Autism.
Cathy .. thank you for sharing your life with us. I cried through it all ... cried because I identified with so very much. My younger son dodged the bullet because his tipping point was never crossed ... pretty damn close, pretty damn close. I remember him saying to me after a pretty bad meltdown and he saw me so sad ... everyone in our family was shattered at that moment ... he said - he was probably 5 - "Mom, aren't you glad you didnt' give me all those shots and I didn't get autismm too?" Enough said. He was saved from the hell his brother has and continues to endure. Will he ever drive? Live independently? Not a clue, I'm in the moment, I like to stay there for now. I will pray for Ronan's continued healing ... you are a true freaking warrior!
Posted by: Kathy Shear | December 03, 2013 at 01:21 PM
They are beautiful!
Posted by: Carter's Daddy | November 29, 2013 at 08:30 PM
"Little" Buddy is more like knee high to King Kong. That boy is growing like weed and not so little, but I hope the moniker stays.
Posted by: Joe Joe | November 29, 2013 at 12:51 PM
Not every day is full of sibling love and acceptance. Oh, how I wish it could be! Most days are, and I am so amazed at how my other kids quickly tune into Ronan's needs. I credit that with how conscious we all have had to become in staying a step ahead of Ronan. The kids are just as aware of his needs as my husband and I are, so they help keep Ronan safe and engaged in an activity for that to happen. The kids know that only because of what happens when he is NOT occupied.
We go through waves of let's-everybody-help-Ronan to ‘Mommmmm! He's taking ___ (my food, my toy, my video game)’.
With the later response, I try to remind my typicals that Ronan needs a lot of direction and doesn't remember "the rules" as well as they are able to. Because of that, they've discovered how to be part of the solution when things get tough. They remember that Ronan gets fed first (so as to avoid a cookie heist while they reach into the snack cabinet), that it's his movie choice first and theirs next. When they help to get Ronan settled first, with a snack, with a video, with his books, etc, they not only feel helpful but they see that they've created peace and it will be rewarded (for lack of a better word) because then they get their own wants and needs met without interruption.
It has taken a lot of time to create these moments, and every now and then we revisit a 'Mom, this isn't fair! Why does Ronan get ___ (extra time on the iPad, 2 cookies, etc.) when we can't?' That's when we have the sit down talk about you (typicals) can do A, B, C,...and the way to X, Y and Z. Ronan can barely do A on his own. I know it doesn’t seem fair, and you’re right. It isn’t. Let's see what we can do to work together to make it easier for all of us. Some of those sit down conversations are full of tears, mine included, but the gentle reminders of how much they can do, and how much easier they have it compared to their brother gives them the boost they need to get through some of this growing up with autism that they are doing.
Sibling rivalry didn’t stop the moment Ronan lost his abilities. It just morphed into something very different. On the bad days we see jealousy and disappointment like any typical family might see. But on the good days, I feel like I am doing the right thing because I see that the relationship my kids have with Ronan includes a selfless outpouring of service and protection. It also includes a love so fierce that nothing can come between it.
Posted by: Cat Jameson | November 29, 2013 at 12:32 PM
Cat, your children are so kind and loving toward one another. Autism has deeply separated my affected from non-affected children. How do you overcome this?
Posted by: beth johnson | November 28, 2013 at 04:06 PM
Thank you, Cathy, for continuing to share the ups and downs, and how to say "worse and deeper than downs?", of "autism." That is but one of the many reasons I love this blog. No one but another autism parent can truly know what it takes day in and day out to live this life. As my very dear friend, who has 2 children with autism, wrote to me yesterday, "It is incompatible to feel good and live this life." Wow. And truly, she is a very positive woman with a deep faith…which just goes to show how trying autism can be on a family…and often, most especially on a mom. On days/weeks like you are currently experiencing, all I can say is cling to your faith in the One who will sustain you through this earthly journey, which can be so difficult at times. He will provide as you trust in Him, just like He provided through Little Buddy last week. And cling to the other parents you know who are on this journey with you. I don't know what I'd do without my "autism mom" friends. They lift me up and keep me going when I am down, on those dark days where all things autism seem to keep kicking you in the gut without relief. Somehow, though, another crisis is worked through, and the sun seems to shine again. May the sun shine on you and your family today, Cathy, and especially on precious Ronan. I will say a special prayer for healing and continued progress for Ronan today :) And one for you, too…for stamina, patience, hope, and joy. God bless you, Cathy.
Posted by: Laura Hayes | November 28, 2013 at 10:49 AM