Dear Addie,
I had been hit, pushed, drooled on, squeezed, screamed at, pulled, stomped on and it was only 10:00 am. I felt like Peter Pan, but you were no Tinkerbell. You were more like a shadow, and a very angry one at that following my every move.
I think it’s safe to say that on Good Friday of quarantine 2020, we were officially falling apart.
We saw the boiling point coming but weren't exactly prepared for the events that would unfold. Whether it be the pasta explosion in your room, the fact that you can now reach and unlock every locking mechanism in our house (all installed to keep you out of areas and safe from harm), or the outsmarting of the washing machine that you discovered unlocks when you shut it off - all the better for you to drag sopping wet clothes through the hallway and down the stairs. We just weren’t prepared. Now I'm not sure if it’s your boredom or you're searching for some sort of routine normalcy - I’ll tell ya’ right now, it’s not in the washing machine Addie.
On top of your display of displeasure at what seemed like everything recently, I made one of my least favorite mistakes. I have been changing diapers for 14+ years now, and no matter how many times I’ve accidentally washed one, it’s a mistake that really stings. It happened again and this time, it threw me over the edge.
You were angry and lost from what you had come to view as “normal”, I was defeated and drained. A great pair we made.
I sat on my bed, head in my hands, wallowing in my sadness trying to fight back my eyes filling with tears. A sight to be seen I’m sure. I just keep thinking - this can’t be it. I can’t do this. Why can’t I make this better? If there’s a lesson here, can I just get the cliffs notes because I’m losing it.
This is a truth that many special needs parents struggle with. The truth that somehow people think we have it all together and the patience of a Saint! Wrong. While perhaps it’s perceived that we have more patience because of the somewhat out of the norm, chaotic yet regimented life we lead (and I don’t know maybe we do), but we can get worn pretty thin and our patience can take a back seat just like anyone else’s.
When you start this journey, you tell yourself everyday to try not to get too far ahead of yourself, live in the moment, focus on the now because if you don’t take it one day at a time you’ll miss out or stress yourself out. There is so much truth in that.
You try not to think about the day when your sweet “little” girl is one day going to be not so little anymore, pushing 3 digits in pounds, and tall enough to look you in the eye. Before you know it – you’re here, and right now we’re really struggling. That little girl is gone. The struggles with the tiny version of you seemed like mountains at the time, but now they just seemed way more manageable than the present. When you were younger, we would read and hear of others who at the time were years ahead of us, their struggles and fears. Somehow, I guess I thought it would turn out different for us. Surely, we would figure this out. That’s the truth, no matter how vain it sounds. Nobody wants to think of a life filled with evolving struggles.
So, there I sat. Feeling every bit of spent and trying to change my thoughts from feeling defeated. Trying to remind myself of the holiness that we celebrate this day in our faith.
Faith. Seems like the easy crutch doesn’t it? A belief in something so much bigger than us. So often there seems to be no answers to our struggles and that umbrella of “faith” gets questioned. Why do some struggle, but others do not? Am I doing something wrong? But in the same breath, that faith we question is what we are grasping so tightly to. It’s taken me years to come to terms with those feelings, but the truth of the matter is it’s always there guiding us even if we don’t see it how we think we should.
As I sat crying, you stared at me for a minute. Literally the quietest you had been in days, and then – you scurried off, quickly slamming my bedroom door behind you.
I thought to myself “good grief, now I’ve gone off and scared you!” Seriously?! This day was only getting better (heavy sarcasm meant there.)
Luckily, I was wrong.
You returned moments later with your beloved blankie (dirty and raggedy just as Linus would have it). You then proceeded to lovingly shove it in my face. I tried to give it back, but you shoved it back again. You were quiet but persistent. Staring and looking hopeful - waiting on my response. That’s when it hit me, you were trying to make me feel better and clearly were not satisfied that the first shove had not done the trick.
All joking aside, you brought me something that comforts you. A heavy reminder of communication on this journey. Without words, you understood in this moment that I needed comforting. I was sad. A strange role reversal to that of a typical parent/child relationship. Aren’t I suppose to comfort you? Another example of this unscripted life.
You see Addie, you weren’t trying to throw me over the edge, your balance of life was off, it has been off for all of us and we are not alone, we are in this together. We need each other - One Team, One Dream. That’s not just on our good days but especially on our bad days.
I couldn’t help but smile by your gesture. I took a deep breath, wiped my face and we continued with our day.
Now don’t get me wrong, you were not suddenly, a changed girl and uber happy. Nope. But somehow after I got off that bed, I had picked up my pieces and pulled myself back together. You were communicating the way you could and I had a renewed sense of strength and determination to keep pushing forward. I could do this. We could do this.
When Easter Sunday came there was a definite sense of calm in our house. A feeling of new beginnings was among us. We sat quietly and listened to mass in our jammies. A far cry from our usual church experience. You didn’t ask for the potty, snacks or to go outside. You sat and listened - we all did. Dare I say probably the first Easter mass in sometime that we’ve actually heard from start to finish. A small blessing for our family that an unprecedented trying time has brought us.
Addie this is a crazy time right now. Some are loving all the extra family time & some are barely treading water. There is no rulebook on how we should feel, but just know we will have good days (I promise) and bad days too. We all fall apart - even mommies and daddies! Some of us more so than others, but thank you for being the reminder of our faith, showing love and compassion will always be the glue that puts us back together.
I love you the whole world full, even on our hard days. Always remember that baby.
Love,
Mom
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