You Mattered, You Still Matter

Dear Aaron,

Tomorrow is March 31, the last day of Trisomy Awareness month. 

I don't know what else to say. I don't know what people don't know. Maybe because I've been living this life so long that I don't remember a different one.

Maybe because what was so hard and so challenging just became our everyday life, our "new normal", just "what we did." 

Maybe that's part of why it's so hard without you. 

Because while taking care of you, learning, knowing, trying, always being on alert was hard mentally and physically, it is NOTHING compared to the emotional pain of being without you. 

I miss your smile, your laugh, your goofy nature. I miss your resilience. I miss your trusting spirit, the eyes that said, "This IV is so hard, but as long as you're there holding my hand, Mom, I know we'll get through it."

And now I guess I get to "get through" not having you here with me.

But somehow, I don't think you're really gone from me. I see your footprints in my life, your handprints on my heart. 

And maybe that's what I need to say at the end of this month. 

Your life mattered, it still matters. You are an influence for good in this world. 

The world is richer for you having been here, and simultaneously poorer for the loss of you.

I miss you.

I love you.

Love, 
Mama

“Sometimes, only one person is missing, and the whole world seems depopulated.”

— Alphonse de Lamartine

I Was Seen

Dear Aaron,

I've been wondering how I appear to others. 

I suspect that most think I'm good. I'm "over it." I've moved on.

I go to work. I volunteer. I laugh at my grandkids and have fun with my kids. It's getting warmer, days longer. I write Michael, I clean up and decorate your grave. 

I talk about you, laugh at memories of your antics, tell medical staff what you taught me.

But that's a mask.

Deep inside, or maybe not so deep, I ache.

I cry.

I miss you So. MUCH!!

And then, after I'd been thinking about this, on Monday a colleague stopped in my office to tell me about a dream of hers, about being at the hospital and some things she saw, and she saw me and I was so broken, so grief stricken...

She saw me, me behind the mask. 

The mask I wear to protect others, and maybe even myself. 

I've gotten so good at compartmentalizing over the last 15 years, but you can't keep things in boxes forever. 

And she saw me.

Oh, Aaron. Is that part of why you were so real, so happy, so accepting? I don't think you ever wore a mask. Oh baby...

I love you.

I miss you.

Love,
Mama 

"It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief.
But then someone makes you a friendly sign behind a window,
or one notices that a flower that was in bud only yesterday has suddenly blossomed,
or a letter slips from a drawer...
and everything collapses."

Colette Gauthier-Villars

Spring Utah Style

Springtime in Utah, 1 Day Apart

Dear Aaron,

Utah weather is weird. 

Tuesday was stormy, wintery, can't see the mountains that are almost on my doorstep. Your grave was covered with a white blanket, the same spot that had tiny green spears of grass the day before. 

Wednesday dawned with a brilliant blue sky that was so bright it almost hurt the eyes, and the mountains in all their glory with glowing white peaks against it. The air so clear I could see the mountains on the other side of the valley as well. And your white blanket was gone.

And then yesterday and today were just sorta in between. A high layer of clouds that mostly blocked the blue, but not quite. Mountaintops touching the sky and in some places piercing the soft underlayer. 

Tomorrow is supposed to be stormy, wintery, again but next week we hit the mid-70's, briefly and then back to winter by the weekend.  

Somehow, this feels a lot like grief. I was at Primary's main campus last week and will be at the Lehi campus this week, and I was fine and expect to be again. But yesterday I cried on the way home from work, and today I sobbed. 

Sometimes I can see clearly, peacefully, and even with joy and gratitude for you. And sometimes I feel numb. Or in a fog. Or painfully, achingly lost in a whiteout. 

And yet, I carry you, and Gramma, with me. I wear the bracelet she gave me after you left every day on my right wrist. Every day except yesterday. About mid-day, I realized something felt off and when I looked at my arm, it was missing. My heart sank and I tried to remember if maybe I had forgotten to put it on. That memory wouldn't come, but I also knew that I keep it with my watch, my beaded bracelets, my stone heart all in the same place and put them on (and the heart in my pocket) at the same time. Sometimes it feels a little loose and I worried that it might have somehow fallen off and I didn't realize it. That was honestly my biggest worry. I have no idea how I would replace it. 

But then, on the way home, my watch and beaded bracelets felt a little tight. As I reached down to adjust them, I felt metal. Yeah, I put it on my left wrist instead of my right. Oh, the relief I felt. Not only is it a tie to you, but also to Gramma. The possibility of the loss made my heart ache, and finding it filled my soul. At the same time, I wondered how I could have been so oblivious for so many hours through the day. 

Aaron, I cling to the things, the objects, that remind me of you, and of Gramma. I miss you both so dearly.

It's been 65 weeks tonight since I last told you goodnight, 15 months on Sunday. As I drove home from the cemetery today, I thought about how I told people you were gone. "At 12:20 this morning, his wings were ready. My heart was not." 

It's still not.

Love, 
Mama

"Give sorrow words; the grief that does not speak knits up the o’er wrought heart and bids it break." 

-William Shakespeare, Macbeth 

From Nurse Holli

This was written by Holli, Aaron's main school nurse for seven years. She became a second mother to him and a dear friend to me. I could not have done half of what I did without her support.

Trisomy is a fight for so many with different chromosomal numbers, and situations.  One with 18 was for a special friend of mine. I treasured each day with him. Everyday was a blessing with him and the others that fight the fight having this disease. My Aaron was a special joy each day until it was not! He needed help to fight the changes going on in his body using assistance from people and  machines toward the joyful end of his life.  But even in pain he smiled and tried to smile to help someone else have joy. He brought me many days of joy, laughter and also showed me that no matter your circumstances you can always learn even without being able to speak and also be cheerful. 😊

Knowing his example of this disorder and learning from it and that he was a person with personality helps me to be a more humble and thankful for those I interact with in my life. It was a pleasure to learn and know this beautiful child each day. ❤️ 

You always think you could have done more. That's why you need a friend — to tell you you did all you could.

~Robert Brault

Trisomy 18

Aaron's 4 Seasons prints behind me.

Dear Aaron,

I've been trying to do my own grief work and found some notes from a lecture I attended. And while what I wrote rings true (oh so very true!) I believe it also misses out on the growth, the love, the strength you brought to me and to our family. (I'll write about those ideas another time.)

I remember when we first learned, or maybe when I first learned about Trisomy 18. I've written before about that 20 week ultrasound where we learned there were a LOT of things going on. I went home and immediately started researching the different findings. Okay, okay, okay... But then I put them all into the search engine at once and it spit out: Trisomy 18. I knew in my heart that day, I knew and oh, how it hurt!!

But time passed (often with a lot of tears) and then you arrived mid-June. Tears continued, especially until we got you home on June 29th, but there were glimpses of joy, of smiles. Like how once they clipped your tied tongue, the binkie you had sucked on so well was now in the way and you would "pop" it out (literally) so you could play with your tongue and your cleft. 

Trisomy 18 was a gift I never realized I needed. I'm a very different person than I was 15 years ago, more forgiving, more understanding, more open, less quick to judge (okay, about most things). Our family is closer, more resilient and stronger too. I have learned to lean in and feel my feelings, and be okay with them even when they're hard.  

I went by your grave yesterday and reached out to touch you in the only way I can now.  Someone else has been coming by as well, leaving visitation stones. I don't know who, but I'm grateful you have visitors. My facebook memories have so many pictures of family and friends wearing blue last year, more than any other year, but I don't think there will be many today. Most people have moved on, and I guess that's okay. You're not forgotten, but the daily fabric of their lives really didn't change much with your passing. 

Mine did, both with your. birth and with your death. I fundamentally changed, and change is good, but it also really hurts. I have to grieve fully in order to live fully.

And for you, Aaron, I want to live fully, like you did, being present in the moment, finding joy in the small things, loving freely.

You have taught my soul.

Love,
Mama 

"Grief and resilience live together." 

– Michelle Obama

Best Boy Band

Dear Aaron,

It's your Jonny's birthday. And he's got two little ones of his own now. 

I spent Thursday at BYU watching him and Deborah dance, and being with Linnaea and Barrett, and Elend and Sterling. Somehow, those four kids help heal my heart a little. And watching how your siblings have grown and are such amazing individuals does as well.

Jonny and Deborah love those high school kids so much. They pour their hearts into those teams. And I got to sit back and watch. A truly amazing experience. 

Friday I spent here at home with Linnaea and Barrett. There's a tummy bug going around and it was Barrett's turn. He was so miserable, and Linnaea was still trying to get over it. We binge watched "Bluey" and just rested. Another balm for my soul. 

And then today, today I took your pulse/ox over to a neighbor who is needing oxygen, hopefully only for a short time, but also had no real way of tracking it while sleeping. I'm so grateful for the things you taught me, for the training, and for the ability to use that to bless other people's lives now that you don't need it anymore. I went by to see you after and as I told you about it, I started crying again.

Oh, Aaron, I miss you so much!  

I did my nails today and chose blue and butterflies because Trisomy 18 day is on Tuesday.  I'll be wearing blue for you that day. 

You know, sometimes I really am okay with you being gone, with Gramma being gone. Honestly. And then it seems that acceptance and peace is followed a short time later with gut-wrenching pain again. 

I heard something the other day that really hit hard: 

When I die, bury me in comfortable clothes and make sure my shoes are tied tight. I have a long overdue playdate with a child.

I watch your niece and nephews play and it simultaneously fills and yet breaks my heart.  What a blessing they are, what a blessing your siblings are, and what a blessing you are. 

Oh, Aaron...

Love,
Mama

"A brother's love is a blessing. Forever will it remain."

- Lilo & Stitch  

Trisomy 13

Dear Aaron,

Tomorrow is the 13th, March 13th, Trisomy 13 day. It's colors are pink, green and yellow. It's also your nine month birthday, only three more months until you're 15. 

The first child I ever met with Trisomy was Arianna, and she has T13. There she was, bouncing away in her wheelchair at the movies and I asked her dad about the wheelchair (it was cool!) and then about her. When Matt said she had "something called Trisomy 13" I about freaked out! You were only a few months old and I had no idea what life would look like. I told him you had T18 and he was excited and got his wife. They were such an incredible support throughout your lifetime, and even after. Julianna and Arianna came to your funeral and as your casket was wheeled out, Ariana started laughing. I think she knew something she wasn't telling us. 

Since that day 14 years ago, I've met so many more kids (and a few adults) with T13 and T18, but Arianna was the first.

She's almost 19 now! Her birthday is the week after yours, which makes it easy to remember how old she is. 

Trisomy 13 is even more rare and more challenging that Trisomy 18, although they're often lumped together by that awful label "Incompatible with Life." I think they should be labeled "Incompatible with Ignorance" or as we call it "Compatible with Joy" and love and laughter and strength.

You are all of those, and so are your friends. 

I like to imagine you kids all in heaven together, banding with each other, strengthening those here and those who will still come. 

And those of us privileged to be your family. Because it was and is a privilege to have been able to know you and care for you. 

You, my son, are amazing.

I love you.

Love,
Mama

“We didn’t realize we were making memories, we just knew we were having fun.”

- A. A. Milne