My Story

Written Lovingly By My Daddy, Dave

Almost a year ago I lost my little man Coby to SMA. I wrote and gave his eulogy at his funeral. It is not perfect but I wrote it from the heart. I know this may not be the best place for this but, I love sharing my son with everyone. Before I read it I made one rule for everyone there. No Crying. I was the first one to break it but others followed.

Here it goes:

Coby Quinn Kulis
First of all Lori and I want to thank everyone for all the prayers and support during Coby's journey. Some days the prayers carried the two of us thru the day.

Coby Quinn Kulis aka little man, super man, cob, Coby Quinn, mini me, cobsey

Our little boy came into this world on September 22 @ 7:25am weighing in at 8lbs 12oz. The moment we saw him our eyes filled with tears. We knew that this little bundle of joy was our son. The second night at 2am I picked up Coby because he was crying and Lori started crying herself and said "I can't believe how much he looks like you". I will never forget the day it was time to take him home. It was in the 70's and I was sweating because I was so nervous to be driving with my Coby. I was also nervous because I think I realized that this little bundle of joy was ours to raise and to care for. No matter what we had going on Coby was our number one priority.

Since day 1 Coby had a soft cry. Everyone said how lucky we were because of this. If we had only knew then what we know now. Coby’s little face could light up any room no matter how dark it was. His smile was ear to ear. If one of us was ever having a bad day all we had to do was pick him up and cuddle with him and everything was fine. Coby's blue eyes could tell a story all by themselves. The sparkle in them could light up the night like the stars in the sky.

We all know that Coby was never given the chance to have a full happy and normal life. But we did make the most of the time we had. Coby loved going for walks with mommy (those walks were both inside and outside every day at 4pm Coby would be ready for his walk) car rides and watching his tv. No matter how Coby was doing at anytime if Caillou was on the tv he was happy. Coby was also a big fan of music. When he was Younger if he was crying and nothing would work I would turn on DMB on demand and play Ants Marching and he would settle down. ( I am still not sure if it was all the colors flashing on the tv or just from me playing it all the time when Coby was in mommies belly). He also enjoyed listening to People our Crazy from Billy Currington. Those two songs could calm him down no matter what. With that being said my guess is Coby would have been a musician. We all know about Coby's sponge bob square pants balloon. Coby would hold this for hours at a time. If Coby was fussy and all else failed it was sponge bob time and it work. As you could all see from the pictures online, mommy would lay for hours with sponge bob in her face. Coby also enjoyed his vibrating bed (giving to him from early intervention/auntie Kathy) he also enjoyed going to swim therapy (elaborate about snow storm last time we took him). One of Coby's favorite places to lay when he was younger was his changing table (he would always laugh and smile while he was waiting to get changed).Coby's favorite color was yellow. Coby's favorite drink was his pedialyte. Coby had his own rules from day 1 stay up until 10 and sleep until 10 the next day. We tried putting him to bed once at 830 to say the least it did not work. Coby won again. Coby was just like me a mommy’s boy. Early on if Lori left the room Coby would cry. In order for me to hold him I would either have to walk around the house or rock in a hard wooden rocking chair. Our first walk around the house was for 1hr and 30 minutes again Coby wins. It was not until about he was 4 months old and I was home from work to spend some time with him that I was able to sit down and hold him.

Coby's strength/courage has touched so many people. Old friends, new friends, complete strangers, friends and family who have been by our side since day one. Reading all the wonderful posts on facebook about how Coby has touch so many lives is truly amazing in itself. People who have never met him saying that they have come to love him. That was Coby. You did not have to have ever meet him all you had to do was see a picture of him and hear his story and you would fall in love with him. People who have children making sure they cherish every moment they have with them. Holding them tight, making sure they tell them how much they love them every day. People praying every night for a miracle. We are grateful for all the prayers because every day we had with Coby was a miracle. No matter how his day was going he would always smile at some point just to tell mommy and daddy he loved them. Coby as you all know was our little superman. Coby accomplished more in five months than some have accomplished in there live times. You are and will always be a super hero to many people including mommy and daddy. You have showed us how to be a fighter. How not to give up when times were tough. How to live a full life in such a short period of time. How to show true love.

With the help of some friends and my obsession with DMB we found two songs that really relate to Coby. Godspeed by the Dixie chicks and my baby blue from DMB. A couple of lines from Godspeed that will forever link this song to Coby.
God speed little man. Sweet dreams little man
Oh my love will fly to you each night on angels wings
Godspeed sweet dreams

Superman in pajamas on the couch

God bless mommy and match box cars
God bless daddy and thanks for the stars
God hears amen wherever we are
And I love you

And a couple of lines from my baby blue.
Confess, I'm quite not ready to be left
Still I know I gave my level best
You give, you give to this I can attest
You made me, you made me
You and me forever, baby

You rest your head, your strength once saving
And when you, wake you will fly away
Holding tight to the legs of all your angels
Goodbye my love into your blue, blue eyes
In your blue, blue world
You and me forever

The one piece of mind that Lori and I have now is that Coby has his Grammy and nana to take care of him in heaven. To love and hold him. If he falls they will pick him up. If he fails they will encourage him to try again. We know they will raise him to be a wonderful little man. We also know he will have a best friend in Violet who also lost her battle to SMA. They will play together, they will learn to talk together, they will learn to walk together. They will look down on their mom's and dad's and make sure we are ok.

You will be truly missed but never forgotten. You will always be in mommy’s and daddy’s hearts and thoughts. Today a piece of me is gone. It is with my little man. Someday we will meet again and share stories of your life in heaven with Grammy and nana. And hopefully we will be able to tell you your name is linked to a cure for this horrible disease. We love you with all of our hearts. Godspeed little man.

Please be Patient While Coby's Song
"Baby Blue" by the Dave Matthews Band
is Loading. It is Worth the Wait!