Friday Thoughts from Family

Dear Sean,

These are some of the things I remember about you that we have done or are doing.

The day you were born your mother called me and asked me where I was at. I told her I was in Arkansas, visiting with Great Pa. She said "GREAT! I am in labor." I said, "You are not due for 21 more days!"

Two hours later, your dad called me and told me that you were here. We got in the truck and drove home after only being at Great Pa's house for one hour.

The first time I saw you was when you were about 18 hours old. You looked beautiful to me and you still do. Your little round face looked just like your Daddy. I stayed just a few days with you and your mother, then had to go home.



When you were 21 days old, I was in my car headed back to Goodland to spend a week with you and your mother. I called from my car to let your parents know that I was on my way. No one answered the phone, so I called your dad's office and was told that they had taken you to the hospital. By the time I got there they were getting ready to fly you to Denver's children's hospital. Your dad and I drove there and it took us 3 hours to get to Denver. In the car, your dad and I talked about you and what we thought was just going to be a check up on your heart. We were wrong!! I sat in the waiting room while your dad went in to see you and talk to the doctor. The doctor and your dad came back out in about 10 minutes and wanted me to come in with them.

The doctor said "your grandson has Down syndrome." I looked at you and said "we can handle this." I hugged your dad and your mom and told them it would be alright. They were worried that you wouldn't be able to play with your brother. I told them both that you would it would just take you a little longer to get strong and that everything will work out.

You and I have a very special bond. I play with you and make up songs with you. The song you like the most is: "My Nana, My Nana" and it should go "My Nana" again but you look at me and say "My Papa!" Then we pretend to fight and I point my finger at you and say "NO NO NO! It's Nana." You laugh and we do it again many more times.

The very first time you laughed out loud was when I was playing with you. You were about 6 or 7 months old. Your mom was talking to your dad on the phone and said "Mom that is the first time Sean laughed out loud." Then she asked me to have you do it again so your dad could hear you laugh, so I did. You made all of us happy.



You will always have a special place in my heart. I have nine grandchildren and love all of them each in their own way. You, my little stinker, really pull my heart strings.



I Love You,
Nana

Written by Sandra Leamons, Sean's maternal grandmother

Friday Thoughts from Family

The Dream

“Sean has Down syndrome.” That was all Deborah said to me in the ER at the Children’s Hospital in Denver. Sean had aspirated earlier in the day and was life-flighted to Denver after his oxygen levels had dropped dangerously low. Deborah flew with Sean and arrived first. I drove with Deborah’s mother and got there about an hour later. On the drive there, I had thought: “What a waste of time. They’re going to fly him to Denver, check him out and tell us he’s fine. What an expensive trip.” Obviously there was more to it than just that.

After Deborah led me back to the ER and broke the news, I kind of blacked out. I had an immediate feeling of being sucker punched in the stomach. Having no experience with Down syndrome or any other genetic disorders, my first vision was of Sean in a wheelchair for the rest of his life. The ER doctor corrected me, and proceeded to give us the grim, worst case scenario Down syndrome facts. The rest of that evening was kind of a blur. I recall tearful phone calls to my family, and kneeling beside the ER bed apologizing to Sean for ruining his life, as if I was somehow responsible. I also recall feeling exhausted as we spoke with doctors after we finally were assigned a hospital room. We eventually were given time to sleep, and after some time of lying awake with my thoughts, I fell asleep.

That night I had the most vivid dream. I was standing beside an old garage. There was a hill behind it with a beautiful house at the top. Beside me were my two sons, Aidan and Sean. They were playing with a red wagon. Sean decided he wanted in the wagon and Aidan picked him up and helped him into it.



I’m not really sure what exactly that dream meant, but I feel it was Someone telling me that things were going to be okay. That Aidan was going to love his little brother and take care of him, not because he had to, but because he was his brother, Down Syndrome or not.



I don’t recall much else from those two days we spent at that hospital, but the vision of that dream is as clear to me today as it was when I woke from it. In a lot of ways, I believe it helped me come to terms with Sean’s diagnosis. It helped me to see that Sean was my son and that aside from a few small things, he was no different than any other baby his age. We knew there would be challenges, but we would take them as they came. There wasn’t much use in worrying about what might happen in the future. In a lot of ways that dream came true. We don’t have a beautiful house on a hill, but Aidan and Sean have a wonderful relationship and every time I see them playing together, I think of that dream.

Written by Doug Minner, Sean's Daddy.

Friday Thoughts from Family

Today's blog is spoken, instead of written, by Sean's brother, Aidan.

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Friday Thoughts From Family (Guest Blog Posts by Sean's Family)

Snuggled up in my Hutchinson "blankie" not wanting to face the morning just yet, I feel a small, limber body crawl onto the futon with me. His leg thrown over my waist; his right arm over my shoulder, stroking my hair; his sweet voice softly whispering, "Tawna, Tawna, Tawna." I open one eye, just a slit, not fully, to see Sean grinning at me as his hair petting gets more excited, and I can't help but smile. Never having been a morning person, I know in my heart there is no better way to wake up in the morning then seeing my sweet Sean curled up with me, petting my hair.

My heart catches in my throat when I realize that just five short years ago, we thought we'd lose Sean. I remember it like it was yesterday. My mom had driven out to Goodland to spend time with the new grandbaby, while I was stuck at work. Glancing at my clock, I realized mom should have made it there, but she hadn't called to let me know she'd arrived safely. I picked up my office phone and quickly dialed mom's cell phone to make sure she'd gotten there okay. The horror and fright I felt when mom told me yes, she'd made it, but she was headed to Denver, as Sean had quit breathing and had been life-flighted to the children's hospital in Denver. My hands shook as I hung up the phone; my chest heaved as a sob escaped my lips. No, this cannot be happening! This is our baby; surely God wouldn't take him from us already! I sat at my desk, laid my head down and cried rivers. My co-workers gathered around, prodding me, trying to figure out what had happened. See, they knew I wasn't a crier; they always thought I was a pretty cold woman - until our baby was sick.

Finding out later that he had Down syndrome was a relief. Did I want him to have Ds? Of course not! However, having gone through the terror of him possibly dying, well, Ds was definitely something we could cope with in our family! Here I am, five years later, and I still don't think, nor designate, Sean as "my nephew with Down syndrome." Nope, he's my nephew; my godson; the sweet, silly, stubborn boy that can light up the room with his smile and squeeze your heart with his cries.

It seems every year there's someone new in my office that can't understand why in the world I would drive three hours for a one mile walk for Down syndrome, until I say, "Oh, well, you've heard me talking about Sean, right? My nephew? Yeah, he has Down syndrome!" People are always surprised because I don't "act" like someone with a nephew with Down syndrome. Really? How does one act that way? I've had friends comment on how "sad" it is. No, it's not sad, he brings me so much joy, just as my other nephews and nieces do! Sean hasn't allowed Down syndrome to define who he is, so why should anyone allow it to define how Sean should be?

Being close to a child with Down syndrome is a struggle; some days it's like we're all walking on eggshells, not quite sure what Sean is going to be able to withstand. The eggshell days are worth it, because eventually we get the days of Sean using a new sign, saying a new word, stealing the cheese off of his Tawna's cheeseburger, or eating a banana in Nana's living room. He's growing, learning, changing every day. He's still the silly, sweet, stubborn Sean who will wake his Tawna up with cuddles and hair pets.

Written by Tanya Carpenter, Sean's aunt

Friday Thoughts From Family (Guest Blog Posts by Sean's Family)

“You will really enjoy Sean—Down syndrome children are so loving.”

Every time someone says that to me I grit my teeth. I feel as though I am supposed to react with something stupid like “I am so thankful that Sean has Down syndrome because now he is more loving.” No, I am mad that he has Down syndrome and would gladly accept his worst days, his extreme stubbornness and his flopping in exchange for him to have the life of a healthy child.

Is he more loving because of Down syndrome? I don’t know. He is a loving child who runs with his clumsy legs flying to throw himself around my legs when he sees me. He is a loving child who gave me the name of Grrrrrndpa! He is the loving child that shared with me one of the most moving moments of my spiritual growth.

Sean came to the altar with me one Sunday for Holy Eucharist. It was his habit to always go up front and Fr. Mike would give him a blessing. Over the course of time, Sean noticed that others were receiving a communion wafer and he was not. He began to complain. On the Sunday that he went up with me, he was standing beside me as I knelt to receive the bread and wine. I held out my cupped hands for the bread so Sean mimicked me and did the same. This Sunday the celebrant was Fr Larry, not Fr Mike. Fr. Larry did not know of Sean’s eating problems, for at that time Sean had never swallowed anything other than baby food. Fr. Larry placed the wafer in Sean’s hand, and before I could get it, Sean popped it in his mouth. I looked at Fr. Larry with the look of total terror—I knew from experience the Sean would spit it out—the bread that had been blessed, the Body of Christ. Fr. Larry saw my fright, and with wisdom beyond my imagination, he said simply, “It’s between Sean and Jesus.” Sean chewed on the wafer for awhile, pushed it around with his tongue and in a miracle that can only happen with God’s help—he swallowed the wafer, then turned and just beamed at me.

My sister and I used to ask my mother, “Which one of us do you like better?” And my Mom would always answer the same, “I love you both in different ways.”

Because Sean is a special needs person, it is hard to not feel something extra for him, to respond to those moments when he is total, pure love in motion. But I have 3 other grandchildren and I love them each in different ways. Sure I have been blessed by the way that Sean loves. I have also seen his other side. He’s a boy, he’s a 5 year old, he’s his Father’s son with a few of Doug’s less attractive characteristics, and I am thankful for every part of his personality because he is My GRRRRandson!!!

Written by Larry B. Minner, Sean's paternal grandfather