Change Your Perspective. In Honor of Caleb Adamyk.

*I originally posted this on my Facebook as a note, I had several requests to post it publicly and so I thought I would do it here, to my Ocalamom family. *

Last night I attended Caleb's Celebration of Life.

I was afraid to go but knew if I didn't I would regret it. 

I walked in and noticed they had photo collages set up.  While looking at one of them this verse caught my eye and I read it over and over with tears streaming down my face:

"For you created my inmost being, you knit me together in my mothers womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well"....Psalm 139

This verse HIT me....HARD because when Makily was little, this comforted me.  I would read it and say to myself  "God knew what he was doing when he made her.  She is the way she is for a reason.  It's all for the greater good, I just can't see it".  It's been so long since I've read that verse or since I have ALLOWED myself believe that.  It's been a long time since I could get past the thought of caring whatever that reason is. 

Then I turned and saw a family walk in.  They had a little boy, he was TINY and had the sweetest way about him.  He was dressed in a cute little suit,  walking......normally....and he too has Trisomy 18.  This condition they say is "incompatible with life" and here is this amazing little guy walking around, the happiness just exuding from him.  I was in awe of him.  I wanted to go to his parents and tell them how amazed I was and how wonderful this little one is but I was afraid I would be a BLUBBERING mess and look like some insane weeping woman so I didn't.  His older brother had shaved "Caleb, T 18" into the back of his head.  I felt my throat tighten as I tried to hold back tears.  How touching that a child would feel compelled to do this.  Then I realized this young boy had a different perspective than most kids his age.  His brother has Trisomy 18 so he understands how precious life is and how amazing these children are.

Several other families with Trisomy 18 kids began filing in and I was in awe of each of them.  They all had their own personalities.  You just had to be looking and watching to see it, and most people won't take the time to do that.  I heard mother's rattling off medical terminology to each other like most mom's would be discussing their child's T-ball practice.  Strangely enough it made me smile.  I smiled because there wasn't ONE PERSON in that room that didn't realize what a miracle each of those children were.  It reminded me a lot of what I feel like when I am with my Chromosome 22 family.  We all just pass our kids off to each other, loving them, holding them, cherishing each second we get to spend with these angels.  It is not often I just hand Makily over to someone I have only known from the internet.  I can and do when it comes to other ES mothers.  I know they love her just as I do...and I know they "get it".

When they brought Caleb out for the viewing I felt a knot form in my stomach and again had to fight back tears.  The site of a coffin so tiny made me sick.  I leaned over to my friend Chontee and said "They shouldn't make coffin's so little, it's not right."  She agreed with tears in her eyes. 

I quietly walked over and gazed at sweet Caleb, he looked so angelic and peaceful.  The part of him that made him Caleb though was gone.  All that was left was the gorgeous shell of him. 

I watched his mother Jeannette embracing other Trisomy 18 mothers, some holding their babies in their arms, some pushing them in chairs, others that had lost their babies.  One mother in particular had lost her baby in December, watching she and Jeanette comfort each other was one of the most touching things I have ever witnessed in real life.  I watched as Jeannette picked up and held the amazing little boy that had caught my attention when I first arrived.  It made me sob, how she must miss being able to pick Caleb up and embrace him in this way. 

The service was beautiful, photos of Caleb rotated throughout, some made me laugh others tore my heart out.  Caleb's pediatrician spoke and something she said about Jeannette touched me.  She said that she was honored to have been Caleb's doctor although at times it was not great for the ego as sometimes Caleb would be in pain and should could not figure out why.  When she had expressed this to Jeannette at one of Calebs appointments, Jeannette said "That's just how these T18 kids are, they just do this and they are hard to figure out."  Much like Caleb's pediatrician I was in awe of Jeannette's kind, caring and loving nature.  Here her baby was moaning in pain and she looked at the doctor that could not figure out why and comforted HER.  It was not her fault, that her child is medically difficult and mysterious. 

That is selflesness in it's purest form.

I don't know if I ever would be able to say that.........except to maybe Dr. Pierre.  Otherwise I'm sure I'd be the screaming mother saying HELP MY BABY, SHE IS IN PAIN, because I have been there....I've been that mamma bear SCREAMING for someone to figure it out and help her.

Jeannette and Steven both spoke and  I was touched by them both.  Jeannette expressed that she had bargained with God for more time all of his life and that he had given her 29 beautiful months.  29 months, when they were told they would be lucky if he was born alive.   29 months of life for a child that doctors immediately deamed "incompatible with life".  I think that term needs to be abolished right along with the word "retard".  How can you deam a child that is LIVING incompatible with life?  Caleb laughed, smiled and was happy and brought joy to EVERYONE he came in contact with. 

THAT'S LIVING.

Steven spoke of times when Caleb could not sleep so he would stay up late with him playing Playstation.  Often times Caleb would push a button on the controller throwing grenades randomly, messing up Daddy's game.   These are moments that he will treasure much like dancing with Caleb in the rain and reading him a book during the brief times he opened his eyes in the last days of his life.

I realized lots of things during Caleb's celebration of life.  I realized that everyone there treated all the special needs children there like they are GOLD......because THEY ARE.   They were loved on, talked to and fawned over.  I found myself wishing EVERYONE had this perspective.  I found myself realizing that I need to REALLY, I mean REALLY work on my anger and sadness of Makily's ES diagnosis.  I need to get past it.  Seeing Jeannette and Steven so graceful and strong when they have lost their angel really hit that point home for me. 

They didn't grieve that Caleb was different, they rejoiced in each day they were graced with his presence.  

In the last hours of Caleb's life his mother told him she wished she could just have ONE MORE nap with him, even if it were just for a few minutes.  Caleb's oxygen levels had been very low all day long and soon after Jeannette had said this his levels went up higher than they had been all day for several minutes.  He heard his mother and rallied to give her one more nap, a few more minutes with him. 

So for those that believe these kids don't understand, that they aren't really there, this is a lesson to you.   Even in death these children understand more than any of us will ever know.   Sometimes I think they know things we do not. 

Their lives matter just as much as ours.

Maybe more.

Rest in Peace Caleb, you will never be forgotten.

In Loving Memory of Caleb Nathaniel Adamyk