Friday, September 18, 2009

Missing Jukie

Is it wrong to be as excited as I am? Jukie is leaving for a week tomorrow, and I can’t wait. That sounds terrible. I love that boy. I LOVE that boy. But, along with his departure goes the constant vigilance. I’ll have eight days where I can leave all of the doors in the house open. All the pictures will stay on the walls. No one will chuck Geneva’s violin down the stairs. I won’t hear water running somewhere and panic that Jukie’s flooding a room. At least this week, I won’t have to replace a toilet due to God-knows-what being flushed down it. I won’t find anyone climbing the back fence without his pants. We’ll generate ½ as much laundry.

Jukie and Andy spend a week at the National Institutes of Health and Johns Hopkins every six months. Jukie is enrolled in two SLO Syndrome studies. He will be seen by the Genetics, Speech, OT, Neuro, and Ortho departments. He’ll be studied by the autism researchers. He’ll be sedated for a spinal tap. And he’ll have an all-night EEG (during which daddy will sleep on top of him in the hospital to keep Jukie from pulling the electrodes off of his head). This morning when I told Truman that Jukie was going on a trip to see his doctors for a week, he asked, “is he scared?”

Truman’s question haunts me. I truly don’t know how Jukie processes these weeks. I know that he occasionally cries when hearing us talk about NIH. I know that he’ll sometimes scream when we’re there, especially at the beginning of the trip. What if it’s terror that he’s experiencing? It’s so hard to be Jukie. He has little say in where he goes and what he does. We ask of him so much more than we ask of ourselves. I have certainly never had even one spinal tap. How would any of us feel about spending a week attending back-to-back doctor visits, all while being unable to express our thoughts and feelings. And Jukie handles most of it with typical Jukie sweetness and love. I worry less about my boy because I know that he’s with the Best Daddy in The World. Andy will make sure that Jukie has every opportunity to run and play and get all of his Jukieness out.

And back at home with the bookend kids, I know that it’ll only take a day or two for me to start missing my little imp. First, I’ll miss his smile. Jukie’s smile does light up a room. And his laugh – it’s infectious. When Jukie laughs, everyone laughs with him. I’ll pine for his sweet kisses and early morning snuggles. I’ll even miss his sippy cups and chewy keys drying on the rack. I might even sniff his jammies; no one smells sweeter than Jukie. I can get all nostalgic over just about anything “Jukie.”

By the time he and daddy arrive at the Sacramento airport, I’ll be RUNning to my boy. I’ll look to his eyes to hear all about his trip; they’ll tell me that it was good. And his kiss will reveal how much he missed me back.


  1. This is so beautiful. I have tears in my eyes. I'll miss him too. For all reasons stated above.
    And because he makes me lol. Have a good trip Jukers.

  2. last comment by Romelia.

  3. Awww, thanks Romelia. I know that he'll miss you and be happy to see you in a little over a week...

  4. I agree. I put his favorite set of keys in his backpack to be sure they made the trip. And his PECS book? Don't forget that! And me? I won't fit, but I'll be there in spirit. It'll be a somber, kiss-less week in our class.

  5. Sweet Truman who so young can show such concern for his brother. All your children are truly special, Kate!

  6. My kids are ALL so lucky to have such special teachers! Yes, his PECS book is all packed. We've got two sets of keys - including the green chewy from school. Sylvie, if I could stuff you in the suitcase, I would. But, I'm sure you're getting too big for that. ; )

  7. Be a mother can be so great. I never have so strong feeling. It is like an obsession. That's why human beings can be passed on and on. Two strongest love: man-woman, woman to kids.

  8. Your little imp is here. Andy is asleep but the imp isn't.

    We have a wonderful meal along the waterfount and then watched the sun go down.

    Hopefully Jukie will fall asleep soon.

  9. Hi there Kate my name is Brittney. I just wanted to say that your blog is really cute and honest. I had a brother a long time ago diagnosed with SLOS, but he died when he was 4. It's been about 18 years, I miss him. However, I love to hear of the adventures that the SLOS kids have in their everyday lives. Helps me think about what my brother would be like today.

    Just know that your blog reaches my heart.

    Brittney P. FL/PA

  10. Brittney, your comment means so much to me. Thank you. I am so, so sorry that you lost your sweet brother. What was his name? I'd love to hear more about him.

  11. Well Kate I finally read yer blog and thanks a freakin' lot, 'cause now I'm crying! It's really the thought of Andy sleeping on top of Jukie just to keep his electrodes on. What wonderful loving parents you are!

  12. Kate,
    I really want to tell you so much about my brother, but I don't know where to begin. At the age of 21, I'm just starting to find out so much about him now. My mom has had a rough time with it. For the past 18 years she still acts as if he's going to come through the door any minute. It was hard on the family because it was sudden and we all knew his life expectancy was short, but the way he passed was too sudden.

    Timothy, was his name. He had a severe case of SLOS. At the time it was so rare and few doctors in the area knew what to do to help treat his diagnoses. When my parents first had him, they didn't understand what was wrong. When the doctors finally told them, they took it and said...Ok, here's our son...for better or worse. They cared for him the best they could until his death in April of 1991.

    I, as a 3 yr old at the time didn't understand what had happened. I used to care for him even at that tender age. I don't remember him, but I feel him everyday. (If that can make sense.) My father told me recently that after he passed it was hard for me. That I didn't grasp death well.

    I should probably mention that my mom had my younger brother Gabriel 4 days before Timothy died, so that was also a crushing blow. Here it dad brought my mom and his newborn son home on the very day that my brother Timothy was being transported to Hershey Medical Center in PA. My brother died before my parents got there (2 1/2 hr ride).

    I say it was God. I am a firm believer in that Timothy was peacefully stepping out with my brother Gabriel was stepping in. However, my family is very broken somewhat because of this. My parents divorced. My brother and I kinda get along and I don't have a very good relationship with my mom.

    I believe the relationship that me and my mom do have is in turmoil because I resent her for never bringing my brother back. I was too young to remember anything, but the feelings of that time are still VERY dormant in my life.

    So, my story is one of tragedy. But right now I attend Southeastern University in Lakeland, Fl. I am almost 22 and am planning on being a High School English Teacher. I feel like after finding out so much about my brother (medical and non-medical stuff) that I want to start getting in touch with families that have children that have SLOS. I want to meet some of them. I want to experience what my brother was like and help at the same time.

    Kate, thanks so much for posting your blogs. It's such an insight to Jackson's persona and life. You are such a blessing to me, I just wanted you to know that.

    If you want to know more, please ask. This is all stuff that I just thought of off the top of my head. I'm an open book and love to answer questions!