The Decision: One Year Later

One year ago today, on December 21, 2011, I did something I said I would never do, I agreed to an amniocentesis. It was also on that day that I made the drastic realization that I would never again make another grand sweeping statement such as “I will never have an amnio” (although that itself is a pretty grand sweeping statement). How did I go from declaring I would never agree to an amniocentesis to confidently walking into the hospital on December 21^st for the scariest test of my life? Well, for that we have to go back a few years...

As you have probably noticed from past posts I enjoy analyzing how our life stories come to be. How one seemingly insignificant detail can shape the rest of your life. It’s what I call the Sliding Doors effect

For those of you who have not heard of the 1998 slightly boring Gwyneth Paltrow movie, Sliding Doors, here’s the main plot: the movie follows her life in two story lines – one story where she makes her train and the other where the doors slide close right in front of her therefore missing the train and changing her whole life’s outcome.

While the movie was subpar the concept was fascinating and I am forever finding Sliding Doors moments in my life and marveling in how a split second can change my life.

I met my best friend, future Matron of Honor and future Godmother to Connor, Lauren at a bus stop when we were 12 years old. Our friendship came easily as we quickly discovered we were the exact same person with the same likes and dislikes . . . especially in the very important tween area of celebrity crushes.

It was through Lauren I met the person who would ultimately help Nate and I make the toughest decision of our lives.

Erin was one of Lauren’s oldest friends from growing up. Erin did not live near us so I only heard stories about Erin until we finally met in person years later when she hosted (along with her wonderful mother) a fabulous bridal shower for Lauren. It was then I was able to see all the brilliant things Lauren was talking about. Over time, Erin and I continued to see each other at Lauren’s family events and with Facebook we too became dear friends.

When Lauren and I were both pregnant with our first child Erin announced she too was pregnant with child #4 and due one month after Connor.  A few months after announcing she was pregnant Erin followed up with the email I would later read and reread to give me strength and courage to send my own email. Erin’s email started out simple “Nick and I received the news that we are expecting a baby boy and that our boy has Down Syndrome.” My heart skipped a beat. My first thought was not “I’m sorry” or “poor Erin, how sad.” Instead, my very first thought was “wow, this little boy is incredibly blessed to be born into such a loving, strong, amazing family.”  And that is exactly what I told her. 

Over the past 2 years I have watched as Erin has created an amazing life for little Ben and all her children. Those two years of experience were very much needed when I finally gathered the strength to call Erin on December 16^th 2011 to talk about the abnormalities found at our 20-week appointment.

As I mentioned in my original post, I will not go into details but I will say that phone call shaped our future. My “I will never have an amnio” slowly started to fade as I listened to Erin tell her full story. It was Erin’s story that helped us make the decision to move forward with the amniocentesis.

During our conversation Erin mentioned something that has always stayed in the back of my mind. Erin, in all her spare time with four kids, volunteers at the hospital to talk with mothers who have a surprise diagnosis of Down Syndrome (I told you she was amazing).

She told me a story of a woman who had a little baby boy about 7 months after Ben was born. When she talked with this woman at the hospital the new mom asked “do you ever wish Ben did not have Down Syndrome?”

Erin said, “if Ben did not have Down Syndrome then he would not be Ben and you might as well give me another baby and I don’t want another baby so NO I do not wish Ben did not have Down Syndrome.”

As she told me this story I just started crying because I thought, “Erin is so great, what a great heart . . .but I will never get there. If the amnio tells us something is abnormal I will never get to the place where Erin is with Ben.”

And yet, it seemed I under estimated myself and little JD before I even met him. But that realization did not come until later.

One year ago today our amnio results came back “normal” meaning we were 99% in the clear for a genetic anomaly.

One year ago today I was rejoicing it was not a genetic syndrome.

One year ago today I stopped crying believing that our family’s future would not be lost.

One year ago today my heart was not as big as is it now. Just like the Grinch, JD has helped my heart grow to hold more love.

One year ago today I had no idea how my life would change over the next 12 months . . . and how that change would be the best gift I never asked for.

So if I could go back more than 2 decades to that day at the bus stop I would tell my 12 year-old self: Hold on tight to Lauren as a bestie your whole life. Not only will she be there for you through some of your best and worst times but she also holds the key to your most important Sliding Doors moment. Then I would say: Don’t pick the blue prom dress – seriously keep looking.  

Good-night friends

The Beginning: One Year Later

I’m a celebrationist. I love celebrating minor events with big excitement. Green milk and Lucky Charms on St. Patrick’s Day, a fabulous tea party for the Royal Wedding (big thanks to Aunt Katie/Nia for hosting that one) and don’t even get me started on the Olympics. Being a celebrationist also means reflecting on events from the past. It puts a smile on my face when I remember the Christmas season while living in the Gamma Phi house or seeing Nate walk into the party on the first night I met him.  With each year every date takes on a new meaning. 

On September 27, 2007 we closed on our first home. 

On August 11, 2011 Connor took his first step. 

On December 15, 2011 were told by doctors “we noticed a few abnormalities” at our 20-week ultrasound. 

Heading to our 20 week ultrasound (Apologies for this picture as I look horrible - no pregnancy glow here)

Each year every date takes on new meaning  . . . for better or worse.

As we wrote in the original introduction email to all our friends and family December 15, 2011 is a day we will never forget. On that day, we were pushed down a very long, dark, scary road with no direction just blind faith. Little by little that road became a tiny bit brighter and slightly less scary. I purposely did not reread our original post because I wanted my thoughts and feelings for 12/15/11 to be pure.

From what I remember Nate and I were scared. Extremely scared. That first day was such a shock we did not know where we would go from there. It did not seem real. I kept hoping everything would be fine. We had nothing to worry about. But deep down I felt it starting to bubble and I knew from those few words “noticed a few abnormalities” our lives were forever changed.

After attending Nate’s holiday party this past Thursday night it is still hard to believe we picked ourselves up to attend his party last year on the same day we received the news. In the hopes of not sounding annoying I am very proud of us. Some of our best friends were at the party with us that evening of December 15^th and yet they had no idea we had spent hours that afternoon crying. Earlier in the day my friend, who was also pregnant, had genetic testing with the doctor we would soon get to know very well. “The doctor said everything was fine and we have nothing to worry about.” As she spoke those words I just kept thinking “will we hear those same words from the same doctor when we meet with him next week?”

Above all, the hardest part of the day was being around Connor. My thoughts kept drifting back to him and wondering how this would change his future. I cried thinking I might not be able to provide the life he deserved. Looking back now I realize how silly my thoughts were but it was understandable. On the 15^th we knew there were potential challenges ahead but everything else remained a soon-to-be-uncovered mystery. It was quite overwhelming and scary.

 

I will never regret my feelings of sadness I felt on that first day (or any day after) because that is how people grow. Without those feelings I would never have known the glorious emotions I have experienced since seeing JD for the first time. As a celebrationist, these next few months will be very ceremonial as we remember where we were this time last year. (Yes, I will be writing blog posts about these special dates – sorry it’s what a celebrationist does). I don’t want to spoil the ending but I can say with 100% honesty if I had a chance to change anything or take away JD’s syndrome I would say “No, Thank You.” JD has added more experiences, joys, and love to our family than we would have ever predicted. On December 15, 2011, I could never imagine I would be blessed with the life I have now. That very long, dark, scary road is no longer dark or scary. It’s still very long but it is much brighter with unexplored opportunities ahead.

Sidenote: My friends think it is hilarious (and slightly ridiculous) that I am a self-proclaimed celebrationist. However, I think I have inspired a few more celebrationist in the group so it can’t be all bad.

Happy 6 Months

Side note: Nate and I created a group in Facebook called Team JD to keep everyone updated on JD's adventurous life. You can expect to see the invitations from us in the next few days. We will continue to update the blog but for quick hits we will update on the Facebook group. With our numerous appointments and an active yet adorable 2 year old I am having a harder time updating the blog on a regular basis. Many of you always send your love asking about JD and this will give you quicker updates. We will post the blog updates on the page as well as the day-to-day happenings of James Douglas. 

Please feel free to remove yourself from the group if it is too much or if I forgot anyone I am happy to add them to the group. Just let me know. Thank you for all your support for JD he appreciates the attention.

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We have had 38 appointments and one hospital stay since I last updated the blog over a month ago. Take away weekends and that averages to about 1½ appointments per day. Please forgive my lateness for this update. 

Through all of our appointments we are thrilled with JD’s progress -- yet the conversations have gotten real. For the first 6 months we have worked on helping him grow and get stronger. Good news, both of those things have happened therefore it is time to discuss how to keep him growing and strong. Those conversations are a bit more intense as the words “surgery” and “long-term” are thrown around. Going in we were fully aware JD would need surgeries throughout his life but we have been in a utopia with only one very minor surgery for his GTube placement up until this point. Team JD is amazing and we have full confidence in our doctors, but we are ramping up our prayers.

 

I make leg warmers look tough

Already protecting his little brother

A few updates from the past month . . .

Nuerosurgery

Big Updates: Tummy time is allowed without the collar to help strengthen his neck. Continuing to wean only 3 hours of collar-free time per day.

Surgery Update: Turns out his neck misalignment starts at C1-C2 on the cervical spine – basically right at the base of the skull. Depending on how strong we can build up the neck muscles the likelihood of fusion surgery is increasing. We will do our best to work on his neck and have the surgery conversation once Dr. A says it is time.

ABR (Hearing)

Big Updates: JD finally made it through a full ABR! We were in a very small soundproof room and the goal was to keep him asleep for an hour. Mom may or may not have caught a few zzzz’s during the test as well. Don’t judge.

Surgery Update: No surprise to us but it is confirmed JD has hearing loss. He can hear but only lower tones for now. Next steps will be tubes in his ears and we will reassess with another ABR. Until then I will keep singing “You Are My Sunshine” in a very low, loud, strange voice.

Pediatrician

Big News: JD’s growth has slowed down. He has not gained any weight in over a month – yet he has not lost any either.

Heart: During the appointment we had many questions but one in particular about his heart. While Dr. D was listening to his heart he listened a little longer than usual which lead to a bit of a discussion. In short, his murmur (ASD - hole in his heart) sounded about the same when it should be lessen. Nothing to worry about but add another appointment to our list. Originally, we were heading back to the cardiologist 6 months after our first appointment. But given the murmur Dr. D is sending us to a new cardiologist - “one of his guys.”  More on that a bit later but I am very pleased to see a new cardiologist . . .

Blinking: About 6 weeks ago Nate and I noticed JD would rapidly blink three or four times randomly throughout the day. Being the Organization Diva that I am I started documenting these episodes down to the minute. This allowed us to the look for patterns within his episodes. By the time our appointment came around I had yet to find a pattern but we mentioned it to Dr. D. It did raise an eyebrow for Dr. D leading to another appointment with an EEG. More on that later . . .

Cardiology

Big Updates: JD’s ASD does not seem to be growing yet it is not getting smaller. As he grows it is growing proportionally with him. Not great news but not terrible news either. His large ASD is also leading to higher pressure on the right side of his heart, which is the definition of Pulmonary Hypertension (check out Medical Jargon for more info). That can be a very scary term in regards to respiratory issues. However, I always find the positive in each appointment and the best news is his function looks great. What more can you ask for in regards to the heart? As we have said for months James has a great heart and it is functioning very well. This kid rocks!

Surgery Update: While there is nothing to be concerned about at this time the original timeline for surgery was around 2 years old (if his ASD did not close on his own). However, with Pulmonary Hypertension possibly leading to more respiratory problems surgery will likely be around his first birthday.

All the surgeons will put their heads together to discuss the order of surgeries as well as which surgeries can be coupled together. The goal is to have him in the OR as few times as possible. Also, the goal is not to have unnecessary surgery or optional surgeries. What are optional surgeries? Surgeries which are not essential to his growth and overall health and tend to me more cosmetic. 

These EKG cords are bigger than me

Hospital Stay

Over the weekend of September 22, JD started to show signs he was coming down with something. He was coughing more and spitting up a bit (which he never does) and sneezing all the time. Plus, his oxygen levels ping-ponged all over the board. During Physical Therapy on Tuesday 9/25 JD seemed weak and not up to the challenges. We cannot always have a great session so I was not worried but I kept a very close eye on him. On the other hand, our Occupational Therapy appointment on Wednesday, 9/26 was a great success. He was attentive and ready to work performing some new moves for us (P.S. he LOVES his Occupational Therapist Kate – more on that in another post) so I thought maybe he kicked whatever was holding him up.

Yet he woke up early on Thursday, 9/27 spitting up more than ever (still not very much but more for him) and having lots of troubles swallowing. I spent the whole morning trying to manage his oxygen levels but they just kept dropping and staying down even after I put him on oxygen. The only time he seemed comfortable and calm was when he was sleeping but he had to be held – as a mom who was only able to hold her baby on a pillow for the first two months of life this was a wonderful confirmation that JD knows me and needs his mommy. I had planned to spend the morning preparing for the sleep study we had schedule that evening but instead I was rushing around trying to pack in case we would needed to stay at the hospital.

After a morning of dro  pping oxygen levels and a call to Dr. D I made the decision to head to the ER. To spare you the details:

Good News: Chest X-ray looked great with no fluid in the lungs – GREAT, GREAT NEWS. A call to the cardiologist confirmed his function looked good and there was no reason to believe the heart was the issue. Finally, a swab test came confirming he had  . . .  a cold.

Tricky News: A cold for JD can create additional complications for him. Dr. D is able to admit directly to Lurie’s and he recommended we stay at the hospital overnight for observation. 

It was the right decision although going from being VIP in the NICU to a general floor was a tough transition for us (well  . . . me). It was more of self-service model with very different nurses, however, it had a comfy chair, an in-room bathroom, and a TV so JD and I snuggled in for the evening.

Back in the ER waiting for the x-ray

Sick little boy

My view from the chair

The only way he would sleep is in mom's arms - I loved it!!!

By the morning JD seemed stronger and I was ready to head home. Not just yet! We had a few other appointments scheduled at the hospital for the day so we hung out until we could see the other doctors. It was a long two days.

Finally on 10/1 (Pumpkin Spice Latte Day) JD was back to normal. Not only normal but getting stronger. 

First day of the October is the first day to drink Pumpkin Spice Lattes - JD is pumped

Neurology

Big Updates: JD’s EEG looks normal – YAY! This is great news. However, he is continuing to blink and sometimes jerk so we are meeting with the head of neurology to discuss possibilities. It does not seem to bother him and his oxygen levels do not change which is a good sign. More to come after our appointment.

Worst part of an EEG - the amount of time it takes to put on the 27 electrodes

GTube

Every 3 – 6 months the MIC-KEY Button for JD’s GTube will need to be changed (more info on MIC-KEY in Medical Jargon). This is something we were told we could do at home but the first change is always done at the hospital. In all honesty I was freaked out at the thought of changing JD’s GTube at home. The surgeon said it is extremely easy and we will get sick of driving to the hospital each time it needs to be changed (oh if he only knew how often we are at the hospital).

On Monday, 10/8 when we went in for JD’s MIC-KEY change I was prepared for a very detailed and very precise procedure. The actual change took a total of 15 seconds – seriously, opening the box took longer. Turns out the doctors were right it is super easy. If we were able to shove an OG Tube down his throat then this will be cake. I made another appointment just in case but pretty sure we can add this to our medical resume.

Best News: After the GTube change JD seems to be much more comfortable. The MIC-KEY was slightly shorter/smaller than the previous one and does not move around as much. Crazy awesome. JD rarely “crunchies” during or after a feed anymore and his reflux seems so much better. It could be a host of factors – he is bigger, he is stronger, he has great therapies – but for some reason he is more comfortable. Our goal is to keep as comfortable as we can throughout life so check this one of the list.

6 Months Later . . .

Receiving our Wolf-Hirschhorn diagnosis opened up a world of scary possibilities for our little James Douglas. Before he was born we had no idea what to expect from our little man. However, now that we have spent 6 months falling in love with him we expect everything from him.

6 months ago I would never have imagined we would be here . . . in a very happy place with a healthy boy. Doom and gloom was all I could think about before JD was born but the moment we heard that first cry I knew this kid was here to fight. I do believe sometimes the best gifts are the ones you don’t even know you want. JD is the gift we did not ask for but he has filled our hearts with such joy and love that looking back I wish I had the foresight to put  him on our wish list.

The next six months will be important for JD’s future but I know he will continue to get stronger everyday and continue to bring so much joy to everyone that meets him.

Look how far we have come . . .

3 hours old

 

24 hours old

6 months old

Dear Jen, a Letter From Your Husband.

Sorry we have not posted in a while, but we have been without internet for a few days and have zero time to be here for ATT to fix it.

Things are going well, but I will let Jen do updating later this weekend. Besides, I cannot write like her.

I am providing this update, while she is out with Connor, as I have struggled with a way to thank her for all the things that she does for me and for our family on a daily basis. Very few can understand what she does 24 hours a day/ 7 days a week, but I thought the least I could do was share a little public appreciation for her.

_____________________

My heart, My soul, the Love of My Life

A sacrifice…appreciated by few.

A love…unconditional and true.

How to thank her, I have not a clue.

So this poem, for now, will have to do.

Thank you Dear,

For all your strength and power.

You lift me up in my darkest hour.

Thank you Sweetheart,

For your comfort and endless love.

You’re a savior, an angel, a gift from above                                              

Thank you Sunshine,

For never wavering and being strong

And being by my side in this journey, no matter how long.

Thank you Jen,

For raising both Connor and JD

Thanks to you, both boys are amazing.

I could never do the things you have to

I could never handle the stresses that you do

The world will never understand how much you give and give

& I will never know a stronger woman, for as long as I live.

Showing you my thanks, I was not sure what to do,

But Jen, you are amazing and I will always love you.

Jen getting us together for some Family Olympics

JD Sleeping...almost 6 months old

A Beautiful, Difficult Day

When I was a senior in high school I spent one crisp October day attending THREE different funeral services for THREE 16-year old best friends who were juniors in high school. These 3 lovely girls were on their way to morning swim practice the Friday of Homecoming less than a mile away from school when a very drunk man ran a red light ending their life. Even at the age of seventeen it was not lost on me how difficult that day was for the girls’ parents.

The thing I remember most about that October day was the final service of the day. A shy, pretty girl slowly walked up to the alter to read her final letter to her best friend. The girl had suddenly lost her father earlier in the year making this day more heartbreaking for her. Through tears while holding a teddy bear she said words I will never forget “Don’t worry my dad will take care of you now.” I was in awe. It still amazes me today how a 16 year-old girl could create such striking words for her final send off to her best friend.

What a wonderful thought. Those who have passed before us are waiting to help us once we transition to heaven. It was the first time I had ever looked at death with a sense of hope. I have never forgotten those words and I never will.

Fast-forward many, many years to a cloudless September afternoon where I once again found myself standing in the sun watching a family grieve over a child taken too soon.  It was a beautiful, difficult day. I say it was beautiful because the sun was bouncing off ever corner with warm arms wrapping comforting hugs around us. Nothing keeps the clouds away in Chicago on a September day but Little J had the heavens smiling down on his mom and dad.

My sweet, sweet cousin lost her 5 month old son in December 2011, which made me question “why?”. While we may never know why Ben-G was taken from us so soon it brings me comfort to know he has been waiting for Little J to join him.

To Little J, you brought so much light to everyone and I know your light will continue to shine from above. Take comfort, our little friend, knowing you have another angel waiting to take you under his wing to be your wingman forever more.

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/