Life is a Story

Sometimes life starts out like every other story but in a split second that story changes. Today started out with a sigh Thank goodness it’s Friday. Today we had our 5^th appointment in 4 days but this was with Genetics. We were interested to ask a few questions but we have learned so much through the other families that we are very well versed.

Throughout my rush to feed Connor, dress JD, and hide the bags under my eyes I turned on the radio. Most mornings I try to listen to Eric & Kathy on The Mix for at least a few minutes as it helps me feel partake in adult conversations – even if I am just listening. But this morning was different. I wanted to tune in for their 36 Hour Radiothon benefiting Lurie’s Children’s Hospital. Eric & Kathy have been hosting the Radiothon for 13 years and each year I turn it  . . .off. Other years I have been unable to handle the heartbreaking stories. But this year was very different. I turned on the radio at 7am to listen to every second and soak up every story during the 36 hours (I continue to listen as I post this).

Let me take a step back and remind you of the post where I mentioned JD's NICU BFF Little J.

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Thursday, 5/28

Today felt like the last day of freshman year in college. JD’s new BFF (Little J) was discharged. After being moved into the loud, cave room we starting chatting with the family across from JD. Little J’s mom was at the hospital even more than I was so it was nice to have someone to talk while sitting holding our kids for hours.

Like I said, it felt like college. Little J has been at Children’s for awhile so I was extremely excited they were going home, yet, I was sad I was losing my mom friend. With an exchange of emails and phone numbers and a “stay in touch” I was left wondering if we would actually get together in the summer (we have been texting so maybe we will “see you this summer”).

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One thing I did not mention is two days after going home I walked into the hospital only to see a sad smile and a wave from Little J’s mom in the isolation room (in the old hospital they needed to keep a re-admitted baby in containment until they can rule out infections due to the fact everyone shares rooms). I was heartbroken for Little J and his family as they had already been at the hospital for the first 6 months of his life but only made it at home for 1½ days. He had a blue spell at home (just like JD would have a few weeks later) and needed more care. Little J’s mom and I become even closer having lunch and frequent in-room chats about our little men. We both wanted nothing more than for the other family to head home. We did not care who went home first or when but we just wanted both of us to be at home with our families.

JD was the first to leave and Little J’s mom could not have been happier. We continued to text over the weeks and stay in touch with updates on both of our boys.

This brings me to 7:43am this morning when the story changed . . . Little J’s mom texted me “Little J made his transition to Heaven at 4:44am – Friday, September 7^th.” I crumbled onto the floor sobbing uncontrollably. Connor was eating breakfast and said “Oh no, mommy’s crying. Don’t be sad mommy I love you.” And I lost it even more. I wanted to hug her for hours and give her my heart to borrow because I know her heart is currently broken.

I cried all morning leading up to our appointment. I wanted to do something, anything to help but I was helpless. After layering on more and more cover-up under my extra puffy eyes we headed out to our appointment.

It felt wrong going to Lurie’s knowing Little J was not there anymore. As we drove through the parking garage I looked for Little J’s mom’s White SUV to be parked in the same spot it was every single day I was at the hospital. It was not there. My heart sank even more.

JD’s Genome

The main topic we wanted to discuss today was JD’s deletion size. As we have talked to other families and researched in more depth it seems JD’s deletion is rather large. We were looking for confirmation as well as information on what that would mean. Without getting into very scientific, but interesting, details – yes, JD had a significantly large deletion. Based on the fact Wolf-Hirschhorn is very rare AND it is more common in girls JD is our very unique peanut. Now, on top of that add his significant deletion, which is (and I am quoting) “very, very, VERY rare.” JD is even more of a miracle than we originally thought.

In general there is very little research on WHS and there is even less research on a deletion his size. Of the teeny, tiny bit of research they have on larger deletions JD is more likely to be on the severe side. Basically he is at a higher risk to have all the things he has. What makes our Genetics doctor and counselor better than most is they did not discuss a gloomy future. Honestly, they said every kid is so different it all depends on how the families work together. There is no predictor of future development but JD is currently on the strongest path for him.

Will he have challenges? Yes. Will he be delayed? Yes. Will we sit back accept his significant deletion? HELL NO! (Sorry mom). He has a significant deletion but that will not stop us pushing him to do his best . . . and knowing the fighter JD has been thus far he will not stop pushing himself.

Surprisingly, we left feeling lighter. Some people might see that discussion pessimistically, but to us today, it was a great meeting. In summary, JD has a larger deletion yet he is doing TONS better than he should on paper. 5 months in with only 1 surgery (G-tube), no oxygen (we have stopped using it at night), 2 preventative medicines, no serious organ issues at this time, continuous growth, a few smiles, gaining neck control, and lots, lots, lots of love. This kid is amazing! It actually made me feel better hearing he had a larger deletion knowing Nate and I along with our parents, friends, and family have helped him not only make it to birth but also to 5 months.

I cannot say it enough but James Douglas is an absolute miracle. He is a champ every single day, he has a big brother that wakes up in the morning to say “Hi JD, I love you,” and he has given us the opportunity to bring very special people into our lives.

Without JD we would have never known Little J. We would have never looked into the big, beautiful eyes of Little J or watched the nurses dance around Little J to see him smile. Because of JD, Little J’s story is forever imprinted on our hearts.

Nate and I walked to the Sky Garden to see part of the Radiothon broadcast from the hospital. Eric & Kathy were on break but I was itching to talk about Little J. I know Little J’s mom is a private person (which is why I call him Little J rather than his full name) but I just wanted to tell someone his story. I did not want the day he earn his angel wings to be forgotten.

As I dropped Nate off at work I created the perfect scenario to honor Little J today. When I got home I called into Eric & Kathy’s Radiothon to keep Little J in everyone hearts. A wonderful volunteer, named Jennifer, answered the phone. She took my information and then she asked the question “would you like this to be in honor of anyone?” Through a tear-stained face I said, “yes, my son was in the NICU for 3½ months. Just this morning one of his little buddies past away and I want our donation to be in his name.”

Jennifer, the volunteer, said “oh my gosh, I am so sorry. WOW, thank you so much for your donation.” She encouraged me to leave a message on the board as they were reading some on-air. So I did and I emailed Kathy the following:

Every year I listen to Eric & Kathy’s Radiothon for about 2 minutes and every year I turn it off after about 2 minutes because I could not take the heartbreaking stories. This year I turned on the Radiothon at 7am to listen to every second and soak up every story during the 36 hours. Why the change? Our 5 month old son, JD, spent his first 3.5 months of life in the NICU at Children’s/Lurie’s. We are so blessed to have our son home with us even on the beginning of this very long road. But today was not about JD - today turned out to be about one of our little buddies in the NICU - Little J.

As I mentioned, I turned on the radio at 7am. At 7:43am Little J’s mom texted me to let us know Little J had earned his angel wings early this morning. I crumbled onto the floor. I wanted to be back in our shared room in the NICU holding our babies and chatting with the nurses. I wanted to hug her and give her my heart to borrow because I know hers is currently broken. I knew I would listen today and find the perfect time to donate. Instead, of my original donation I doubled it and made it in honor of Little J. Our son has a long road full of challenges and Lurie’s will be right there with us the whole way. As I snuggle with my son today I think of Little J and his family and this is for them!

20 minutes later the batteries in my radio ran out (I know super lame I am using a radio) so I started to update The Mix app on my phone so I could continue listening. 2 minutes later, a friend texted me to say “I hear your story on the radio.” WHAT!!!! They were 12 hours into this event, I had listened to about 10 hours of it and I am missing Little J’s story. By the time I was up and running the story was over but Kathy was pleading with listeners to call in for Little J.

My friend told me Kathy had a very hard time reading the letter because she cried the whole time. Little J touched her heart. Little J’s story led into a song and when they came out of the song Eric said “WOW, every one of our 40 volunteers is currently on the phone. If you are getting a busy signal keep trying but thank you for filling up our phone lines.”

For the first time all day I cried tears of joy. I would like to think those 40 volunteers were taking donations in honor of Little J. No other stories were shared leading up to the song and no other stories were shared coming out of the song. It was 6pm on a Friday afternoon and yet a phone bank (which had not had more than 10 calls at a time all afternoon) was full of donations.

I believe life is a string of events that tell a story. You need an early set-up in order to understand the development and payoff in the end. Today was that perfect string of events. I listened to Eric & Kathy’s Radiothon for the first time in years only to find out about Little J’s angel wings. We had our genetics appointment only to find out while he is severe on paper JD is outshining his rare, rare, rare, RARE deletion. Coming out of our appointment feeling revived I was able to honor Little J by donating in his name. Rounding out the story with Little J inspiring a whole phone bank to light up with additional donations.

Thank you Little J for your bright eyes and smiles. You are forever in my prayers and thoughts. I know JD has a very special guardian angel watching over him.

Please continue to honor JD's best buddy by donating to the Jackson Chance Foundation:
http://www.jacksonchance.org/donate/