Graham's Birthday - October 2

Graham's 5th birthday came without him on October 2nd. Matt and I decided to have a few friends and family over to remember Graham together. We wanted to watch videos and tell stories and reminisce about our sweet boy. We figured people would want to acknowledge his birthday and perhaps not know how so, we told them! Everyone brought a gift that Graham would have liked and we took them to the Children's hospital at UNC. Then on Graham's actual birthday we took the kids to the zoo. A place we took Graham. A time to remember and a time to distract ourselves!

These are the words I shared at the birthday celebration:

I had many nicknames for Graham. And more than once a day I would go through my list and he would shake his head yes or no as to which one I could call him. “Graham, are you my sugar lump? My pumpkin pie? My muffin top? My stinky dink? My pookie doo? My snooki snook?”

I miss him terribly. I miss holding him. I miss his smile. I miss watching him dance and reading him books. I miss being constantly in awe of him for how smart and how brave he was.

Graham endured much suffering during his short life. As I attempt to process all that has happened I play each scene over and over in my head and wonder how differently things might have been if this had happened or that hadn’t happened. But I always manage to come full circle, back to God’s sovereignty. If God had wanted things to turn out differently for Graham then He would have orchestrated that. We could have lost Graham many times during that awful 6 month stay at Duke Hospital. But we were blessed with two more years with him. Two years to make precious memories with his siblings and to get a genetic diagnosis that gave us some needed answers.

Thankfully, most days, Matt and I are both able to accept what has happened and continue to trust in the Lord for strength to carry on. I am so thankful for that and I attribute that to the many prayers of our friends and family.

I heard another bereaved parent say that he felt like the paralytic in the gospels whose friends carried him to Jesus on a mat and lowered him through the roof to be healed. When we have been so paralyzed by trauma and now grief, our friends and family have picked us up and carried us to Jesus. I know many of you have probably prayed harder for Graham and our family than I myself have. I’m so grateful. Thank you for continuing to carry us to Jesus.

It brings me great joy when Ben or Hallie mention Graham. They seem to accept the idea that “Graham is in heaven with Jesus.” I don’t think they understand it but they have an answer, and they can repeat it. Occasionally they mention him, and Matt and I talk about him too. Mostly when we doing something Graham liked to do or playing with a toy that Graham liked. A few weeks after Graham passed we were swinging outside and Ben said, “Mommy, I wish Graham could come back home.” He was thinking of Graham because he loved to swing and now his swing was empty.

Just this week while riding in the car, the Hokey Pokey came on. Hallie said “Mommy, Graham really liked this song. He liked to dance to this song at the library at story time.” I said, “Yes, he did, baby.” Then she said, “When Graham comes home we can play this song and dance with him.” As my eyes filled with tears, I said, “Baby, Graham isn’t going to come back home. He’s going to stay in heaven forever. But one day, we will get to heaven to be with him. And then we can all dance together. How’s that sound?” “Ok.” Then Ben chimed in with “But first we have to get baptized so we can go to heaven.” They are excited about baptism since their cousin, Hayes, got baptized this summer. I assured them that you only have to be believe in Jesus to go to heaven. But it’s good to get baptized to show others that you do believe in Jesus. “Ok.”

Thinking about seeing Graham again one day in heaven gives Matt and me great hope. In fact, I often pray, begging Jesus to come back soon and end the pain and suffering of this present world. It seems the veil between heaven and earth gets a little thinner once you have somebody so dear on the other side. Don’t get me wrong, it still hurts like hell even though we know Graham is in heaven. But I read these sweet words recently, that when we see him again, Graham will thank us for enduring the loss so that he could have his reward sooner.

A letter to Graham from Daddy

In the last days of Graham's life Matt somehow had the strength and presence of mind to write this letter to Graham. Matt's brother read it at the funeral. It's been 4 months since Graham died. We miss him so much. I hope to write more in the coming days as we continue to grieve and process all that has happened. 

(This is the portrait that a friend made for us for the funeral and now it hangs in our living room and I stare at it every day! We miss that sweet face.)

This letter is by far the most difficult I have ever had to pen.  No one ever expects to lose a child, and even though we have known for some time that this day would most likely come, nothing can ever fully prepare you for that day.

Graham was the bravest, strongest and most intelligent 4-year-old that I have ever known.  Considering all that he has been through: heart surgery, neck surgery, surviving ECMO, trach placement, hospital stays that number over 8 months total, and the constant needle sticks, trach changes and everything else associated with caring for someone who was as medically-involved as him.  I have never seen nor known someone go through all that he has (or even close to it) and still remain joyful about simple things in life.  Most people would be highly depressed simply based on the surgeries and hospital stays alone.  Yet Graham endured all of this and accepted his life and found ways to enjoy it and not be limited by his challenges and difficulties.  None of this even considers the fact that his vocalization was that of a one-year-old.  He could enunciate about seven words: mommy, daddy, Ben, Hallie, I love you, bye-bye and night-night; and most of these you would really only understand if you had spent a considerable amount of time with him.

These words, however, pale in comparison to his actual vocabulary.  His ability to spell and use his “talker” proved that he had the capacity of someone much older than 4-years.  He could spell his full name, family names, all of his cousins’ names, at least 20 different animals and probably 20 or so other nouns and phrases.  He knew his alphabet, lower case and upper case, numbers, and of course, all of his colors.  You could put a stack of 15 or 20 books from a series in front of him, and he could tell you right away exactly which book was missing.  The fun part of that game was guessing which book you couldn’t find.

Graham also had severe skeletal dysplasia including significant scoliosis.  He didn’t sit up on his own until about 1-year and didn’t walk on his own until about 1 1/2-years.  He never really crawled, but rather sat down and used his feet and legs to scoot along the floor.  Thus my nickname “scooter” for him for quite some time.  Graham never had the ability to run or jump.  He never got to truly jump on a bed, or wrestle with daddy, or get tossed in the air, or learn to kick a ball or many other physical activities.  But this never stopped him from reaching out and grabbing one of the twins by their neck for a big ol’ hug when they were least expecting it.  Sometimes this meant that Graham accidentally “tackled” them when his intentions were to love on them.  The sweetest memories of these three were definitely when Graham felt an urge to hug them, then reached out and the twins decided it was easier to just hug Graham instead of getting a choke hold or tackled.

Graham also loved music and dancing.  Some of his favorite things to do were dance along and do hand motions to many different kids’ songs.  Many days were spent in his bed (during his supposed nap time) watching kids’ music videos and dancing along instead of resting.  I guess he thought it was more important to have a good time, listen to music and enjoy life than take a nap.  Sometimes it was hard to blame him.

Graham loved his toy lions.  He has had many different lions in his life including stuffed lions, lion stickers and a lion costume, but none of them have come close to being his favorite as the two plastic lion figures he slept with every night.  A good friend pointed out one time how fitting it is that Graham would choose a lion as his favorite toy.  She said this was proof that Graham knew who the real Lion was, the Lord Jesus, and that Graham would look to the Lion for security and protection, just as he does to his toy lions.  The Lord Jesus Christ is Graham’s true Lion, and He will always be Graham’s security and protection.

Even though Graham’s life was physically limited and quite short, his impact on others is significant.  I will never know, this side of heaven, all of the people that prayed for him and for us.  Many people who prayed for Graham probably did not know us, his parents or immediate family, but they knew of Graham, his strength, his fight, his battles and his character.  His life was short, but his impact was great.  Graham taught me patience.  He taught me endurance.  He taught me that whatever I had going on in my life separate from taking care of him, it was small potatoes compared to what he had endured.  If Graham could have joy, then I have no excuse to not have it either.

These past few years have been a tough road for Liz and me.  The last several months in particular have mostly been survival.  Many things in life are put on hold when you experience such as we have.  But I have told Liz many times, I would not trade it.  Having Graham has been a joy and the Lord has taught me many things through him and in taking care of him.  Do I wish he were still here?  Absolutely.  Do I wish he had been healed?  With all of my heart.  But I know the Lord has had great plans for our lives, and He is still unveiling those plans through this.  I have full confidence in knowing that Graham is with Jesus; he doesn’t need a ventilator; he doesn’t have trouble breathing; he doesn’t need his talker; he can talk and sing and dance with Jesus.

If you know anything about Graham, you know how much of a momma’s boy he is.  The hardest thing I have ever heard in my life was when Liz told me some months ago: when Graham dies and goes to be with Jesus, he won’t need his mommy anymore.  It was the most piercing thing I have ever heard.  It was scary to think that Graham would be somewhere that his mommy was not.  But on the other hand, he will be with Jesus and he won’t know what it’s like to miss someone or miss something.  He will have Jesus and that is all he will need.

We miss you Graham, but it’s okay, you don’t have to miss us because you have Jesus and we will see you soon.

Love,

Daddy

Breathing Easy

Graham went to be with the Lord on Wednesday afternoon. His kidneys finally gave out on him. He went peacefully in my arms, surrounded by family and friends. He is completely healed and breathing easy in heaven. We appreciate your continued prayers in the days to come for our family.

Graham's funeral will be at Providence Baptist Church in Raleigh on Saturday at 1pm, with visitation following. The burial will be at Hillcrest Cemetery in Colerain, NC on Sunday at 3pm. We are using City of Oaks Funeral Home.