I realize I am dating myself, but I remember when the fad was paraphernalia of all types with some version of “All I needed to know, I learned in Kindergarten”. Often lengthy lists of social/emotional skills. Actually, might be good time to pull those lists out and post them everywhere. Several years ago, I had seen a humorous version of the list, but it got me thinking about what really matters, and where we really learn that. As my mind wondered, I started mentally making up a list of all the things that I have learned that matter. Realizing promptly that I had learned many of them from my children, and things I had hoped I would not need to learn, coming from Peter’s medical journey. Never written down, but tucked away in my mind, it all came bubbling back. Today, Peter taught me to dream big and not let anyone else’s judgement stop me from dreaming my own dream.
Last October 14th, I FaceBook posted a heartfelt reflection on the cancer journey. October 14th was the 5 year anniversary of Peter’s leukemia diagnosis. It was an emotional day, as many emotions squished down into dark places hoping to never see the light of day, surface up in the oddest of ways bringing on tears, laughter, the need to talk it out, and hiding in the bathroom for some alone time to just let the emotions be. Here are just little pieces of what I wrote that day:
Five years ago I was right, when I so hoped to be wrong. …….. Finally we got Peter admitted. A few days later they wanted to send us home with antibiotics. I refused to discharge. “What do you want, Catherine?” I remember my heart pounding when I said “You may think I am the worse mom in the world right now, but I want you do a bone marrow test on Peter. I believe he has leukemia, you think he doesn’t, and I need you to prove me wrong.” ……… In the dark of night the doctor came in, when he should have been gone on vacation, followed by our pediatrician holding a box of tissues, his eyes red and swollen. “Well, Peter fooled us all, but he didn’t fool you…..he has leukemia, it looks really bad, we need to get you to Denver and start chemo right away…..” I have never wanted to be wrong as much as I did that day. Every October 14th I relive that day over and over and over again. Five years later it feels like we have gone to hell and back, but we are back! ……. But today I am reminded to be thankful – thankful for Peter being here today, thankful for the medical teams that worked tirelessly to give Peter a fighting chance, thankful for all who fed my family when cooking was the last thing on my mind, thankful for those near and far who kept Peter in prayer – storming heaven endlessly, thankful for those who listened when I needed to talk and provided advice, thankful for those who reminded me daily to be strong – strong for Peter. And I can’t forget those who did emergency runs to Starbucks on those days I needed to drown my stress with coffee. One day maybe October 14th won’t bring me to tears….but that isn’t this year……one day I hope cancer is a thing of the past, with a cure available to all.
During the cancer journey, especially when Peter was his sickest with little to no hope, my big dream was making it one more day. Waking to Peter being alive, and going to sleep thankful for another day with him, and dreaming that tomorrow would still be filled with him. For where we were, that was dreaming big. Our dreams were simply wishes for one more day.
As Peter got better, chemo came to an end, our children started to reach other milestones – our dreams changed. No longer wishing for one more day, I dreamed but limited by the fear that the clock was ticking for the next shoe to drop. The next scare. The next crisis. The next time something we never thought would happen to us, would simply become our new reality. It was like being ready to leave home, but being afraid to go passed the driveway. That secretly bracing yourself for the next emergency, but trying to live in peace and calm and joy and all those things you should be living after surviving the journey we did.
Reality is a year after Peter’s miraculous recovery, my mother was diagnosed with cancer and died 8 weeks later. A year after that, my dad gave me a big health scare, and introduced me to a whole new set of medical tests and specialists that Peter had avoided. A few months later, my father-in-law was diagnosed with cancer. He made it through chemotherapy, and was on the road of recovery when we suddenly lost him too. And, months later we lost Peter’s beloved special education teacher to cancer too. Trying to dream, but bracing ourselves….always…..
Peter started 2nd grade in the Fall. He struggles academically. Peter has physical and neurological challenges, above and beyond Down syndrome, that make learning hard. But what Peter has figured out is that every day is a dream. Every day is another chance to make it a great day. He hits that driveway every day with a big smile, excitedly running to the bus. He spends his day smiling at everyone. That “Isn’t it a great day?” smile that makes you pause and think. He rides that bus home, only to chase it up the road waving madly with two arms in the air. “Hey, don’t forget! Today is a great day so keep on smiling!”. Another Peter life lesson, when in doubt laugh because life is just easier if you think it is funny. A hug can disarm the grumpiest of family members. And, NO only means NO when it doesn’t involve avoiding a shower or bedtime.
This year has not been without challenges when it comes to Peter. In the last 12 months he has had 6 special education teachers and two general education teachers. Several school paras/aids. And, well, it is a recipe for Peter doing what he does best. Lowering expectations. “If you don’t expect me to do anything, then I don’t need to do anything.” More free time to just live the dream! This is for a whole other update, because alas, it does not lead to dreaming big – as in really big, regardless of what anyone else thinks.
You ready for it?
We found out today that Peter has a big dream to be a priest. “What??!!”, you say. Yep, Peter had a secret dream (likely because his speech is so limited). The signs were there. Peter will often try to recite a word here and there that matches to what a priest says during Mass. Peter has a wild affection for priests, although to make things easier he calls them all Joe. When we go up for communion, Peter has attempted an NFL level interception for the host so that he can put it in my mouth. The signs were there, but we did not see them, because we were just not dreaming big.
Today, Peter chased his big dream.
After 9am Mass at a church we have attended just a few times, we headed over to another building for Knights of Columbus breakfast. All the kids there, Peter included, ran around the parish hall chasing paper airplanes made from placemats. From one second to the next, John is white as a ghost and says “Peter??!!” Crisis mode. Each dispersed in different directions, scouring the parking lot and streets for Peter. As I rounded the front of the church, John and I crossed. I decided to check the church. Keep in mind that 11am Mass has now started, so I quietly open the doors only to be followed by a loud gasp.
Much to my relief, I found Peter. Much to my horror, he was rearranging the altar. I did that mix of casual trot and panic run, that resembles a scared chicken, as I worked my way up to him. The priest, standing near the choir, visibly relieved to see someone walk up who seemed to know this runaway child. Peter’s big smile said “Look at me! I’m doing it! I’m living my dream!!”, while his body movement said “Lets set things up a bit differently here.” I bowed, and stepped up to get Peter. Not to have his moment taken from him so quick, he decided to play “catch me if you can” around the altar. The choir kept the song going as crazy mom chases little man around the altar. I thought the music would climax when I finally caught him, but it was drowned out by the collective sigh of relief by every person squished into the pews in the most packed church I have seen – rivaling even Christmas and Easter Mass attendance!
Please, laugh all you want. Close your eyes and envision crazy mom chasing little dude around the altar, and just let it all out. After all, Peter has taught us than laughing is good. When we have the choice to cry in shame, or laugh at ourselves, it is good to try laughing at ourselves.
We live in a harsh world. Someone I consider very wise told me once “We compare our interior to other peoples’ exterior”. Ok, she told me this last night but it was a gee-whiz-aha moment, and I had to share that. Sometimes we are our own worse enemies. We give up before we try because we don’t think we can dream big and get there. We look at what others show us of their lives, and we believe we aren’t that good at this thing called life. We take our raw and honest internal mess of good, bad, love, hate, fear, courage, failures and successes, and bump it up against the exterior of someone. Someone who has a their own private, raw, and honest mess on the inside, but who works every day to keep it together and portray some sort of pulled together image on the outside. Apples and oranges! Or, fruit salad to filet mignon. So not the same!
Other times, we are hurt by the judgements of others. Lets face it, sadly our world is becoming more and more judgmental by the day. I’ll save that soapbox for another day. But the fact is that no matter how strong we are, those judgements have a way of etching into our hearts and feeding embers of self doubt until they can reach blazing fires on the worse of days. We tuck dreams away, we chastise ourselves for being foolish enough to dream, and then we stop dreaming. Our discouragement becomes bigger than our dreams. Our dreams become, at best, desires limited by borders created by our self doubt and hurt. But, more days that not, we are just trying to survive another day, and keep our mess inside enough to keep a pulled together exterior going.
So, let me put it to you this way. You, me, and many of your closes friends stand in a line up. We tuck an individual with Down syndrome, or any other type of physical or mental disability, into the line up. Disability to the outside world, differently abled to those of us who love them. Put us all together and let the world judge like the world likes to judge. Take a single guess at who will be put at the top of the list of the least abled to do anything. Same person would likely be at the top of the list of least likely to succeed. Succeed by those worldly standards that eat away at us every day.
That is Peter. Peter, in his short life, has crossed paths with too many who believe he won’t or is not able to achieve much. Crossed paths with those who have given up before trying hard to help him. Crossed paths with those that believe my goal in life should be simply to “keep him comfortable so that he will not suffer”. Yeah, that is still said in the 21st century. Crossed paths with those that insist he will be like having a baby for the rest of his life. Crossed paths with far more people who judge him by his disability, than encourage him by his potential.
Given that input from the world, Peter should just give up dreaming. That my friends is where our “All I needed to know, I learned in Kindergarten” is appended to by Peter. Peter dreams every day – I see the twinkle in his eye – he may dream little, and he may dream big. But he dreams. Anything from how to snatch the iPad from his sister and outrun/outsmart her until the battery dies before she can get her hands on it again; to being faster than the bus and getting to the top of the block before it. So far the bus has beat Peter to the mailbox one house up, but that is not stopping him from trying every day. Peter dreams of flying, and gets a glimpse of that exhilaration as he catapults himself from any surface higher than two feet and from which an adult is within flying distance – “Ready or not, here I come!” Peter dreams many dreams, most of which are tucked inside him without words to be expressed, but driving his joy for every day. Because every day is one more opportunity to dream, and one more opportunity to chase those dreams. Today, that dream to be out of parental range, gloriously stand in front of a large crowd, and gosh darn it re-arrange the altar into a more Peter-friendly arrangement was achieved. One more to check off that bucket list. Ten bucks says that had I not caught him, Peter would have said “Just call me Joe”.
Life can be hard, and sometimes it feels like it just down right sucks. Sometimes we can feel so little, surrounded by big people. Other times our internal messy fruit salad tells us to just give up, and try to just keep people believing we got things figured out. And the hardest is when someone says something that breaks our heart into a million pieces that spell “failure”, and we stop believing in our own God-given talents to chase our dreams.
It isn’t easy – but if you will work to stop holding yourself back from dreaming, know you have a partner over here that is going to try doing the same thing! No worries, my dream is not to be called Joe and rearrange the altar, so you will have no need to chase me down. But instead I hope that in some crazy counter cultural way, we can actually encourage each other to find that crazy passion and courage to chase the craziest of dreams. We only live once, and we don’t know how long for, so lets go for it!