Like so many parents before me one day I just realized it was autism. The realization burned through my core like a paper house on fire. I no longer had the power to squash out the facts that were screaming into my rigid silence. One day with shaking hands I ran to our computer. Our big Mac- the one where our legacy of pictures had been stored. I needed to find it and confront it immediately.
I wasn't much of a camera girl during Grey's first year. We took a few pictures in the hospital when he was born and just a few in the first six months.
Those were etched in my brain and offered no clues. I needed more. The in between. Everything leading up until this awful day where I transformed into fear and soot.
I sit and with icy intensity click through images, so afraid of what I might feel and find. Which day had it happened? I watch an old video. A profoundly ordinary moment where Greyson is pushing his favorite green truck all around the living room floor. Not just back and forth, fixated on the wheels. He is 13 months old.
"Greyson, are you playing with your truck?" I asked, so clearly enamored with this little soul. As soon as his name sailed from my mouth his head turns fast enough to cause whiplash. Yes, that's what I thought...that is my Greyson. The one I thought was still here. The one who now rarely turns to acknowledge his name. The one who no longer pushes his truck around; he is simply content spinning its wheels.
Five months pregnant with Parker and Grey 18 months old
I scroll through the pictures with painful curiosity. My heart stops. It's his second birthday. We bought him a package of Disney Cars. He has lined them up and is examining them from the corner of his eye. I have no recollection of this specific moment and only believe it to be true because of the proof in the picture.
My stomach dropped out and my lungs burned shut. I felt like I saw the Devil. Yes, it was in our house right at this moment in this picture. In him. So somewhere between 15 months and 24 months he went missing and I didn't even go look for him. As his very own mother, his DNA. The person closest to him in the whole wide world, why can't I pinpoint the day?
I can't watch those videos anymore. It aches in places I wish I didn't have.
I think of these moments when I hear from a new mom or dad in my old shoes. Their greatest fear is my reality. They want anything but my outcome. They fear my life. Sometimes that scares me. Gosh- deep down I think we want people to admire us, maybe even envy our life. But people don't and yet I understand. And I also now know the fear of it all is so much worse than the actuality of it. I think that holds true for everything scary.
And now... I'm being honest with every part of my mind- I fully believe this is exactly the life I am supposed to have. Not just the bits and pieces perfect parts. All of it. It's a package deal and so much of it really was a custom choice by me. I picked this life. If course I didn't pick autism but I picked pretty much everything else. Marriage has been really hard- so we are working on it. That's how I feel about life- we have the option to choose or change. So often we have a circumstance, an event, a fact- and in those first moments afterwards- WE GET TO DECIDE HOW WE FEEL ABOUT IT.
That is incredible. It's like a flip of a coin but with less chance- more choice. We can easily pick angry. No one will really talk you out of angry. In fact, you'll find more angry people. You will attract them. And because we all love being right, we find more evidence to support our anger. That's called justification. We add in a good dose of entitlement. Like we deserve other things from life that better be pretty damn brilliant to offset this other pain. And we feel judgement at those who don't carry the burdens we do. For those who take for granted the gifts they do have. Anger, justification, entitlement, judgement and the original life circumstance. That's too heavy for any one person to bear.
But if we are really being kind to ourselves, and really give ourselves time to hurt and mourn and breathe through it all and feel about it and think about it and talk to others- we can flip to the other side of the coin. The opposite of angry- acceptance. And when you free that angry space up there then makes room for gratitude and a high gloss happy. A happy that you can easily wipe clean when you smudge it. It's beautiful and light and freeing and gives you back the rest of your life.
And now that I am here I of course have hard minutes, moments and even days. But I can also say the good parts erase, justify and even make humble the bad. This is why I am here. They are why I am here. For me- motherhood taught me what life really means. It's painful and raw and imperfect and mine. God, I'm so lucky.
If you don't like where you are, flip a coin. Try again. Pick any color you want and start over again.
If you are at the beginning of something hard- it's impossible to see the light. I promise you, it is there. Little tiny light bulbs will slowly light your way. It doesn't feel like that. You swear it won't be true for you. I promise, everything will look different soon.
Oh the old videos....they are the hardest for me. I intentionally avoid watching them and looking at old photos because it breaks me apart all over again. Literally makes me feel like I am getting stabbed in the gut. We recently got a new computer and my husband downloaded all the old videos and pictures onto it. He happily watched the videos and smiled, I on the other hand had a mental breakdown all over again and a crying fit that kept my eyes swollen for days. WHEN did it happen, HOW did this happens!!!! Questions I'll probably never know the answer to... I really hope some day I can flip the coin and enjoy looking at those videos again of my precious boy. He and I both deserve that. - KReplyDelete
"And I also now know the fear of it all is so much worse than the actuality of it. I think that holds true for everything scaryReplyDelete
. . .
That is incredible. It's like a flip of a coin but with less chance- more choice. We can easily pick angry. No one will really talk you out of angry. In fact, you'll find more angry people. You will attract them. And because we all love being right, we find more evidence to support our anger. That's called justification. We add in a good dose of entitlement. Like we deserve other things from life that better be pretty damn brilliant to offset this other pain. And we feel judgement at those who don't carry the burdens we do. For those who take for granted the gifts they do have. Anger, justification, entitlement, judgement and the original life circumstance. That's too heavy for any one person to bear."
So true. And, no one has a perfect life. So everyone faces this reality sometimes, that your life is not exactly what you wished it to be. The people who have the "perfect" children and the perfect job who don't make the choose anger get angry about the lack of Harvard admission or the NFL career or the NFL career at Green Bay instead of the Furty-Niners, or the Supreme court justice job, or the Presidency, or the Nobel prize.
I like getting the reminders to live the life I have, and not to spend too much of my time being angry about the one I don't have. Some anger isn't bad; it can motivate action and coping and acceptance. But pervasive anger that rails against everything we felt we were entitled to? Mostly produces more hurt.
Sorry for the typos, "who choose anger", "Forty-niners", . . .ReplyDelete
"The opposite of angry- acceptance." That's the take home message really. It took me a long time to get that but now that I do life is so much easier. When some new terrible hits our family, I now know that I have start workng towards acceptance as fast as I can because that's what releases the anger. Thinking you have to be happy to not be angry is too hard but acceptance is more manageable. For me at least, with acceptance comes peace and happy starts to find its way to me again. Being angry always just makes an already difficult situation suckier and requires so much freaking energy. I'm all for acceptance now!ReplyDelete
A great message for anyone who is being hit by "hard" right now. Bravo Chrissy!
This is so true for me. Every word, I could just plug my son's name in. I wish I didn't read this at work because the tears are flowing!ReplyDelete
Thank you for writing this today.ReplyDelete
You do not know how much I needed this. My kids are grown and on their own. I on the other hand am divorced and live with my 81 year old Mom. Initially, it was because I could not afford to live on my own and we did not want her to live alone (My brother was moving out of state). Over the years her independence has faded and the signs of dementia is surfacing. Her good days were getting further apart. The past two weeks it feels like there has been no good days. Every day is a confused day. She goes to the Senior Center, the bus picks her up for that. So far so good there. Anyway, I am child #7 of 8 kids. No one comes to visit except for 1 brother. Everyone else has excuses or just stays away without saying a word. The past two weeks I have been in the angry phase, very angry and venting to anyone that will listen. Finally this morning, I had to stay home for a home alarm repair guy to come. She left on the bus and I was home alone....just me in silence. No work with 2 hour commute, rushing around getting prescriptions, grocery store, eating on the go, etc....no more avoiding reality. I began sobbing and the tech called saying he would come this afternoon instead. I sobbed the entire way to work, luckily I had an hour to regroup. On her good days in between before she was say how frustrated she would get when she got confused and couldn't remember things. Now, she just stays confused asking the same things over and over. At night what day it is tomorrow and the next morning what day it is. Friends ask if I have considered putting her in a home of some sort. She made me promise to not put her in a home EVER. My Aunt went through some horrific things in a nursing home. Texas was rated 49 on the grading scale of nursing homes. I needed this blog today, I need to flip the coin and find acceptance which will help me make some decisions and maybe cope with the reality. There is not going to be any help. I am on my own with her. My siblings (except for the one) are just worthless. You inspire me with your posts. Most days I do count my blessings and see how you are so positive and I love the pics of Frank with the boys. I think it is awesome that he can stop and take time for them. There are still good people in the world. - JanetReplyDelete
Your perspective on life is amazing. Your blog is an inspiration to us all.ReplyDelete
My son turns 6 at the end of October. I can remember the same heart-stopping moment of watching him line up his colorful plastic toy cups along the edge of our big soaking bathtub. What I also cannot recall was the precise age.ReplyDelete
Looking at old pics and videos are very bittersweet for me, also. Pictures of him next to his little baby friend when they seemed so much the same. The pics of the boys a bit older where the differences started creep in and the sinking feeling began. He is my 4th child, but first boy, and I knew something was different but still tried so hard to look away... Those videos and photos sure does feel like a punch in the gut and a simultaneous stab in the heart on some days, and on others I just see my beautiful son.
We are also happy and mostly adjusted to our new normal as a family, until those triggers that suck me back down and make me feel as though I'll never adjust. Hugs to all of you sharing a similar journey. :(
I enjoyed these early pics. I don't think I ever knew the details - that he seemed to be developing typically until he wasn't. I can only imagine for you and others like you how hard it must be to look back. I, from my removed perspective, find hope there. Maybe someday they will find a way to start the process that seemed to stop. It started so part of the blueprint is there perhaps? And even if that's not the case, I see how Grey understands so much and is communicating in ways that he can - like the horse picture. I was thinking about an earlier post and how "bock show" sounds like "bicycle" to me so maybe he was trying to say "bicycle" for "motorcycle".ReplyDelete
I look forward to watching the next steps of Grey's journey and Parker's and yours. I know there are lots of lights on that path ahead. I can "feel" them already glowing there.
So very true. You and I seem to be at the same spots often in our journey (of course of kiddos are the same age). I don't watch the old videos much, but I heard a research clinician speak to mostly clinicians a few months ago and they all laughed at the "theory" of regression they have heard of from parents. Like it's some sort of joke we all just imagined in our minds. I was furious and went directly home and emailed the physician a short clip of Christmas a few months before Adam regressed. I never did get a reply, but I desperately hope the clinician at least learned to ask if there were any parents in the audience for her insensitive comments in the future.ReplyDelete
I also have been struggling with the acceptance piece. I recently listened to a great sermon series from a pastor in atlanta titles in the meantime. He is talking about all kinds of struggles and situations where there is just nothing you can do. The point and advice is eventually to get to the point where you don't just accept the situation, but you decide to think of it as part of God's plan. It's a stretch for anyone (and he says that), but I do have to agree in the bigger picture there must be a purpose in this struggle. It's definitely a work in progress for me (it's hard to feel love for Autism when Adam is bouncing off the walls at 3am), but I have felt much more of a piece since I started the journey.
Thanks for this. Our son got his formal diagnosis of ASD less than 2 weeks ago. We saw it coming but still, when the doctor said the words the room started spinning. How can somehting that's not a surprise be such a shock at the same time? My head spins like the room did trying to process all the thoughts and feelings (and wow there's so much to get organised in terms of new/different therapies.) Your blog helped prepare me and shift my perspective and see the joy sooner than i would on my own, so I thank you, Chrissy , because you've helped me along. Here's to peace and acceptance, though i'm not there yet! Love from Lottie :)ReplyDelete
beautiful post, thanks for writing, i always look forward to your posts and pictures of your family.ReplyDelete
this seems relevant, too: the poet rilke said that love is the hardest work we do... "the work for which all other work is merely preparation"... you love those boys so well, you really do! it comes through in every post.ReplyDelete
Chrissy, where on earth do you get such depth of insight?! Your writing is SO inspirational. I feel as if I'M feeling the very things you write so eloquently about. But of course I can also empathize because I lost my baby girl 32 years ago, and it still hurts and saddens me. I'm not sure I ever experienced anger, but the depth of sadness was as if a hole had been torn right out of my heart—I truly knew the term "heartache," because it was a physical pain. Through the years, I've learned "acceptance" if not total peace. I'm even more thankful for my wonderful son and his beautiful little daughters, and for my life as it's been. In retrospection, it seems so rich—though in the hard times, it did not. All those bits and pieces became a tapestry, sewn with love. No, it hasn't been easy—but I do NOT envy others who have had it "easy," because mine is so much fuller. Thank you, Chrissy.ReplyDelete
I cannot thank you enough for this post...for putting to words the collective experience of so many of us moms. I will never forget the night that I came to the realization - it was nearly 2 in the morning and I'd been consulting Dr. Google once again for how to explain these changes in my precious little boy. Of course, I knew it was anything but autism...until it was autism. This past year I've poured over pictures and videos as well, trying to pinpoint when everything changed. It continues to feel urgent as we have added twin boys since our son's diagnosis. Every day I wake up wondering, will this be the day? Will something come and steal away another one of my boys? But then I read your posts, and I see that you and others have survived and can even some days make sense of it all. I will continue to work towards the acceptance. I recognize how important it is, but I also realize it is a journey to get there. Thank you for all you do, Chrissy!ReplyDelete
I saw your label post on a friend's blog and then decided to search your older posts and found this (not that it's that much more. We're still waiting for our Developmental Pediatrician to diagnose her, but I can remember the day I read about PDD-NOS and realized that was my daughter. I can remember the week before that when I co-worker who studied special ed in school explained that Autism wasn't black and white, because I said to her "lately, it seems like my daughter has autism symptoms sometimes, not all the time and not all of them, just a lot of them." And my husband didn't believe me til he read the one article I did too. And we thought, how could this be, she passed the autism screening with flying colors at whatever pediatrician appointment that was (1yr? 18mons? we can't even remember anymore), even though we knew she never started speaking. We still are in that mindset of "when did she switch out of that normal phase where she hit every developmental milestone, to now where she seems arrested somewhere between 18 & 24 months developmentally (she just turned 4)."ReplyDelete
I didn't realize other people had that same feeling of there was a period where their child was developing so normally and then just not. Why scientifically does that happen?
As I start to accept more and more that we're going to be labelled ASD, I value hearing from more and more people. And I may show your other labelling post to my husband. I don't think he wants people to know about her potential diagnosis, he is a very private person, but I like the way you put it.
Sweet Kathy, thank you so much for sharing with me. It's amazing the ability we have to think our brains until they bleed. WHEN? When when when? Was it there all along- there when they seemed to have no red flags- OR was there a day or moment when it happened? Chances are we won't get the answers we need in this lifetime, but how could they not cross our mind? Especially when we first realize we have a child on the spectrum. I have so much faith in you and your intuition. Much love, ChrissyDelete