2nd Annual Hope for Lillian Grace Reindeer Run

WooHoo! Can you believe that our 2nd Annual Hope for Lillian Grace Reindeer Run is 1 month away! I cant express how excited our family is! With Lillian starting her transplant journey in just one week, this race takes on a whole new importance for our family. Please, feel free to share our journey! The more shares, the more awareness. The more shares, the more prayers! Below is the link to register for the race through First Place Sports and I’ve also copied the Facebook event. I will be publishing a blog next week after Lillian’s all day appointment in Gainesville with the transplant team. Please keep us in your prayers as we travel there, pray for us as we explain things to Lillian next week, and as we meet the team and she goes through a full day of testing!

Hope for Lillian Grace Reindeer Run 5K

https://www.facebook.com/events/129991337623196/?active_tab=discussion

The Appointment We Feared For

For the last 4 1/2 years we did our best to prepare ourselves for the worse. We know very well what this ugly disease has in store. We know worse case scenarios, we know best case scenarios. Joe and I attend appointments together in fear of the appointment we hear its transplant time. We’ve done everything we can to be ready for that appointment.

Lillian’s been thriving. Aside from a few minor infections, the last three months have been good. I feel as if I’m almost on autopilot. We monitor her diet and blood pressure closely. Her blood pressure has been so consistent its almost scary. She’ll have days where the readings are identical. We’ve had a fun summer! We’ve had countless cookouts with friends and family, zoo dates, craft days, pool time. We’ve enjoyed some peace and quiet.

Until yesterday. Yesterday was the day I was talking about before. Yesterday was the day I mentioned in a dozen other posts. Anxiety is always high on appointment days because were always fearing that one appointment. But it turns out to always be okay.

Yesterday wasn’t okay. I still can’t quite grasp what has happened, what will happen. As my beautiful daughter sat on the ground building the highest block tower she possibly could, tears streamed down my face as her doctor explained to us her function has drastically declined, its time. As much as I have tried for over four years my heart wasn’t ready, my heart would never be ready to face this. I couldn’t breathe. It felt like my entire world was moving full speed around me, expect for me, I was standing in the background hearing it all and feeling my heart crumble. This is my baby, my sweet baby girl who is only 4 years old and about to start preschool. This is my baby. I’m just not ready, were not ready…

Lillian went from having 40% function for the last 2 years, to having less than 25% within a 3 month span. As a group, we have always been on board with a preemptive transplant, meaning we chose to attempt transplant before Lillian needs dialysis, which is generally started when there is approximately 15% function left.  We will be working with the UF Transplant Team out of Gainesville, FL. We are also putting Lillian on a full renal dialysis diet to try and take as much stress of her kidneys as possible. Within the next week we will hear from both the transplant team and a new dietician. Generally speaking, it takes approximately 3-6 months to get in with the transplant team. At that time, we will begin Lillian’s invasive transplant workup to see exactly what her body needs from a donor. Once that workup is complete, we will begin our search for a living donor. God willing, we have a family match for my sweet girl. Until then, we will be doing everything we can to keep her kidneys going strong. Well be following strict diet restrictions, keeping a close eye on blood pressure and supplements, and doing labs and office visits every 3-4 weeks.

As parents, Joe and I are terrified. We still have so many questions that won’t be answered until we meet with our transplant team. Our lives have felt like a roller-coaster that we’ve begged to get off for awhile now. In addition to Lillian’s journey, we’ve experienced infertility, loss, disease and heartache behind closed doors. I would be lying if I said our faith wasn’t on edge. We’re hurting and were angry. As parents, you never want to see or hear your child will go through something so huge, whether you anticipated it or not, it doesn’t make the blow any easier.

We haven’t been able to choke down the tears just yet. Our fears and heartache are still very raw, as its only been 24 hours since receiving this news. Like I said, our faith hasn’t been at its strongest points the last few months. However, for me, my Christian music is my biggest source of prayer lately. I makes me feel human, forgiven, and relatable. Driving today, I blasted my stereo on high as one of my favorite songs came on.

“Oh my soul, oh how you worry, oh how you’re weary, from fearing you lost control. This was the one thing, you didn’t see coming and no one would blame you, though. If you cried in private, if you tried to hide it away, so no one knows. No one will see, if you stop believing. Oh my soul, you are not alone. There’s a place where fear has to face the God you know. One more day, He will make a way. Let Him show you how, you can lay this down, cause you’re not alone.”

In that very moment, I just wanted Him to know I’m here, and I’m hurting, but I will never lose hope or faith.  I found myself wanting to be back in the same pew I found myself in nearly 5 years ago after Lillian’s diagnosis. I found myself praying, hoping and wishing for a sign, a feeling that He was there. Then it hit me. I don’t need a new sign, I don’t need a new feeling, that sign, and purest symbol of hope I could ever wish for is the same one that kisses me every night before bed. Its the brightest blue eyes that looks up at me wiping my tears. Its the beautiful smile that screams “I LOVE YOU TOO!” Its my rambunctious, oh so brave 4 year old that He gifted me 4 1/2 years ago.

Am I angry at everything my family has been dealt? Absolutely, more than you will ever know. But God knows that, He’s heard my cries and screams, He’s seen my tears and felt my pain. Again, I am downright terrified. I don’t truly know what to expect. But I know we are not even close to going through this alone. God will never abandon myself, my husband or my daughter.

Thus far, we have only told family and close friends. However, one of the most beautiful things we’ve ever experienced is seeing what the power of prayer can do, what our village of support can do. And, putting it blunt, we need you all now more than ever.

At this point, we have chosen to not tell Lillian what is going on. Until we meet with the transplant team, she will not know. She is a very smart little girl and knows very well her kidneys are sick. She knows what she can and cannot eat and can tell you why. She knows names of her medications and what they are for. She knows her kidneys are big and have boo boos. And that’s enough for my sweet 4 year old to know right now.

After talking to friends and family, and getting asked “what can we do” a lot in the past day, we’ve come up with the idea to create Lillian’s adventure list. I asked Lillian if she had one thing, ANYTHING she could do, what would it be. She answered, “to ride the horses again, to ride Papa’s horse.” Nearly 2 years ago we went horseback riding in Gaitlinburg, TN. Now, I am not sure if the ranch or horse are even around anymore, but that will be on my to do list. We will continue to think of fun activities and adventures we can spoil our girl with, because life post-transplant is very secluded for the first year. We want her to enjoy the energy, strength and security she can right now.

We are also in the works of organizing our Second Annual Hope for Lillian Grace Reindeer Run. And let me tell you, this race just got a whole lot more important to our family. We are hoping to work with a running company this year so we can watch it grow even bigger. So stay tuned for race information and sponsorship options!

Again, this is something we weren’t prepared for or expecting to hear yesterday. We’re still processing the news ourselves, still trying to grasp that this time, this is actually happening. There are times where we fall to our knees in pain and tears, there are times we just hold each other and cry, and there are times were downright speechless. I laid in Lillian’s bed for an hour last night, staring at the tiny sweat beads forming on her nose, brushing her blonde hair back from her cheeks, while tears streamed down my cheeks and hit the pillow next to her. This will not be easy in the slightest. But we do know we are not alone, and God has blessed us with the strongest little girl in the world.

#hopeforlilliangrace

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Previous Blog Found Here

From the  very beginning we chosen to document our journey with Lillian and ARPKD. We’ve written about hospital visits, labs, medications. We’ve celebrated milestones and cried over setbacks. Our blog has been a safe place for us. We can write about our pain and worry, excitement and pride. We plan to continue blogging about our journey here, however, if your curious about the rollercoaster before today, you can find all of our past blog post on the link below.

https://hopeforlilliangrace.blogspot.com/