Landon: Long Hill

It is with a broken heart I share with you that Landon has passed away. After 7.5 years of fight, Landon’s final days led to his passing, at 9:53 pm on Thursday, April 22nd.

Landon’s life has been full of ups and downs. We’ve battled together through illness, seizures, hospital stays. He and I have fought hard, side by side, through so many things. My commitment to him was always to fight for him with all that I have, as long as that was what was right. Over the last few weeks it has become increasingly clear that his fight was fading, and the hardest, but most loving thing I’ve been called to do as his mother was to be willing to stop my fight too.

I had the most unfortunate of burdens of knowing what this looks like. I watched Nolan go through a similar pattern nearly four years ago. While that burden is unbearable, and this circumstance unimaginable, it allowed me to be honest with myself as soon as I saw the same signs in Landon.

After some particularly stressful moments in the last couple of weeks, I’ve had very transparent conversations with Landon’s palliative care Doctor and case manager. I knew he was getting weaker, I understood what that meant, I sought their support giving him the best, most loving care we could give. When we talked Tuesday to say he was rapidly declining again, and it was time to just comfort, they immediately worked to readmit to hospice, provide comfort measures, and ensure we were supported and surrounded by a loving team that already knew him well. I had the blessing of spending most of his final hours side by side, holding him, talking to him, and admiring those long eye lashes and sweet cheeks I know so well.

By Tuesday night, my parents were in town to help, Justin was aware and working on a plan to get home days sooner than planned, and family members were aware of the seriousness of the situation. At this time I felt fairly sure, but Landon has fought hard so many times that it still wasn’t clear if we were dealing with days or weeks.

Wednesday morning I awoke to a white world. Thick, wet, completely out of place snow had blanketed my view. It was as if God said – just for today, I’ll hide the blooms, I’ll hide the green, we’ll forget about spring, and instead welcome a blanket. I pulled grief up over my shoulders like a blanket that day as well, welcoming its weight, its cover. Grateful that the outside world looked as out of place and wrong but beautiful as the inside felt. I hid the brave, the optimistic, forgot about the fight, and instead welcomed grief. Landon was declining further.

It was now certainly not if, but when, so Justin worked hard again to scoot his flight even earlier, and thanks to a supportive management team, now had a flight home in style arriving right in town no later than 8:00 pm Thursday. His parents were on their way as well, with a similar arrival time. Their vehicles pulled in the driveway minutes apart, and ahead of schedule, giving everyone a chance to see and say goodbye to Landon and to support one another. Similar to Nolan, it was as if Landon heard “everyone is here, we’re ready when you are”.

Everything was as peaceful as one could have hoped. Losing a child is unimaginable. Losing two will certainly prove to be as impossibly hard as it sounds. But both times, I’ve been able to provide a loving, comforting, calm environment. One with love, prayer, music, stories, family, and hugs. Both times those on their way arrived just in time. Both times, the boys final breaths were in my arms. My biggest comfort today is knowing that this time, instead of death splitting them up, it brought them back together.

Diagnosis Anniversary – A Girl on a Mission

One year ago – we finally hit a point in an almost year long journey where we had an answer.

Isabella was sick.  But Isabella didn’t have a death sentence.  Isabella could be treated.  There was hope.

When I see her today, she is so vibrant, so happy, so enthusiastic for life that I can’t reconcile who she is today back to who she was one year ago.  It’s unbelievable to my own eyes, and I’ve watched along every single step.  

On March 5th, 2019, I took Isabella to her Neuro Muscular appointment. Armed with auto immune blood results I had requested on my own, and printed resources about dermatomyositis, juvenile arthritis, as well as a couple of non-auto immune less likely ideas like Rett and Tay Sachs, I wasn’t going to leave until they took auto immune seriously and we had a more aggressive search plan. Upon seeing her again, and getting negative SMA results and red flags on auto immune…auto immune was agreed to be a front runner. She was admitted, with an MRI and a biopsy same day. Additional tests. Additional doctors involved, including rheumatology. We had an answer. It was juvenile dermatomyositis. Odds were 3 in 1 million, and even then her onset was on the very early side of things.

They started steroid and IVIG treatments immediately, with numerous doses in the hospital.  We had an issue with outpatient treatments at first, and between her immune system being in chaotic upheaval and the issues with treatments, she was admitted again for continued steroid and IVIG in April, and admitted one more time Easter weekend when her poor immune system went haywire and she developed an infection.  But we were on a path and could feel it.  Despite those 3 hospitalizations, we were already starting to see progress.  She ended up with weekly treatments an hour away administered via IV.  Tired veins and two PICC lines later she now has a Port that works incredibly well, and she can take a treatment in under 4 hours and gets to do so at home.  She can talk the nurse through it, and it the BEST patient.  

From a developmental stand point, she started to see improved head and neck control, and improved swallow function within weeks.  Soon she would play for longer, and engage with her toys more appropriately.  Her posture improved, she began to tolerate tummy time again, and before you know it, therapy was fun instead of torture.  She started crawling in May at the age of 25 months as we were moving in to our new house.  She had AFOs to help with her ankle strength.  She borrowed a gait trainer but outgrew the need in a matter of two weeks.  She borrowed a walker and paired with her AFOs started to gain real independence around the house and the day care, even navigating the mulch of the playground on her own.  She started to cruise the furniture.  In July, when I was in the PICU with Landon, Isabella took her first steps to a chorus of cheering and counting cousins, and she hasn’t slowed down since.  These days I have to tell her not to jump on the couch, to be more careful, and to slow down.  But deep down I’m not sure I mean it.  I love her fearlessness.  I love her strength.  I love that she is living life loudly, boisterously, and at times, carelessly.  Because she’s doing it all from a place of strength and joy. 

In the course of the weeks and months leading up to March 5th 2019 I had been told by various different doctors it wasn’t auto immune, it wasn’t dermatomyositis, she was too young for some of the items on the list, the regression was too serious so it was likely neuro muscular, and my favorite…I was probably holding her too much. All while watching her slowly, and then quickly, crumble before my eyes. This phase was so hard for many of us. I was emotionally and mentally drained. But of all involved, I cannot begin to imagine what it was like for Isabella. Now that I know her spirit, her zest for life, and how loud and exuberant she really is, it’s that much more clear how miserable she was while all of this was happening to her. I can’t give her back the time it took to figure it out – but I can do everything in my power to help her make the most of each day, and live up to her name. Isabella Reese. Enthusiastically devoted to God. She is a blessing, her life is a miracle, and I am honored to watch her soar.

Wish Granted

When I was little mom used to count down to adventure with sleeps. “Two more sleeps until school starts!” “Four more sleeps until vacation!”

My house tonight has three little sleepers who have no idea what adventure awaits.

I didn’t withhold information because I like surprises. I waited, cautiously, because our life is already full of surprises, and they aren’t always good. The past 7 days alone have included two issues that were almost deal breakers for Landon traveling. Let alone the last 4 months.

Yet after one more sleep, an adventure awaits that this family so desperately needs.

A WISH come true, for family time and memories that last forever.

Time. Together. 💙

Please pray for our family. That the coming days are filled with health, safety, happiness, and the kind of giggles, smiles, and stories that heal hearts and let love linger forever.

#marathonpipeline

#wishgranted

#twoifbyfaith