Wednesday, September 18, 2019

A Cuddle Cot for Ryan House

Moments ago I sat in the peaceful dark of our dimly lit bedroom and rocked Jennings to sleep.  I reflected on how quickly these last two months have gone by and how I can't remember what life was like before him.  How much love we all feel for him and what blessing he is.  All afternoon I've been vividly aware, even more so than normal, of just how blessed we are.  Sitting here tonight as I rock Jennings curled into my arms I give great thanks to be able to listen to him breathe quietly and to the feeling of his chest beating next to mine.

For it seems a lifetime ago and yesterday the same, that I was sitting in a similar chair at a hospital just down the road holding my other son as we said goodbye.  In that moment I held Noah so tightly, prayed and begged God to let him stay, while my ears and eyes listened to his breathing slowly come to a stop and his heartbeat fade.  Melanie put her stethoscope on his chest and let me listen to the final moments of his life here, to the final beats of his heart.  We watched as his life here on earth ended and his journey to Heaven began.  Peaceful and calm and excruciatingly difficult all in the same.

Just days, literally hours before I begged for more time, I pleaded with God to just let him stay.  I asked why and promised God I'd ask for nothing else if he'd grant the miracle and let me keep my baby.  It was not the plan, not the way it was supposed to be.

Noah's life was short, but his life's purpose still continues on.

Sitting here tonight just over a week away from Noah's Kindness Project, I reflect on where we've come, how we've changed and why NKP means so much.  Five years ago we started this project as a way to give back to others for all the kindness that had been bestowed upon us.  Honestly, it was also a way to pull us out of the depths of grief and sadness we were not sure how to navigate through. How does a parent turn the loss of a child into something you can understand? How do you heal a heart permanently broken in sadness?  While I do not have the answers for everyone who endures such pain, I look back now and see Noah's Kindness Project has been our saving grace, all because so many of you have helped us through.

Today we celebrated the start of our 5th Noah's Kindness Project by donating a second Cuddle Cot in Noah and Colton Cowell's memory.  This is in great thanks to our wonderful friends at Campbell's Crew Cares, whose mission is to provide hope to those in need.  Last year when we donated to the NICU at Banner, Campbell and his family committed to donating a Cuddle Cot for the next five years' as a way to support Noah's Kindness Project. For more information about the Cuddle Cot, what it is and how it is such an incredible gift, please visit here.  These gifts are possible because of the funds Campbell and his family raise and from gifts to their organization. We are so thankful.

Today we gifted our second Cuddle Cot to Ryan House.  Ryan House is a 12,500 sq. foot home built to provide respite care, pediatric palliative care and end-of-life care, as well as appropriate therapies and activities in a supportive, home-like setting where all our welcome.  Their mission is to embrace all children and their families as they navigate life-limited or end-of-life journeys.

Today we were gifted with the opportunity to learn more about all they do.  Gigi greeted us and shared how grateful they were for the gift. Very considerate to our story she listened as Carrie shared the mission Campbell and their family works to provide, and allowed us to share our story.  Gigi kindly listened and as we presented the gift.  She said, this will be a cherished gift we can definitely use to share with families.  My heart went out to those families and at the same time felt comfort in knowing through this gift they would have the gift of added time with their baby.  Gigi shared with us that one of the many benefits of Ryan House is that there aren't as many rules.  Unlike a hospital that is often restrained by rules and policies, at Ryan House families can stay with their loved one after they have passed, and end-of-life wishes can almost always be granted.  The gift of time, for a family having to say goodbye, there is no value than can be placed on how much that time will mean.

Gigi shared they had a young girl stay with them who was a freshman in high school.  She knew her journey here would end before she would walk across the stage at her high school graduation.  In honoring her wish, they had the principal from her high school come to Ryan house and they held their own special graduation ceremony where she was able to receive her "diploma" as her parents watched on.  This is just one of the many special stories shared about how Ryan house is an incredibly valued resource for children and families in such a challenging time.

Gigi gave us a tour of the facility and not only is it a place for end-of-life care but also a respite home for families who have children with life-limited diagnosis.  Simply stated, it is incredible.  It feels warm and cozy like a home, yet equipped with the medical necessities a hospital can provide.  It is a place where love flows freely and happiness is felt through your fingertips.
They have a therapy pool that allows children to swim.  Some have never been able to go swimming in their entire lives.

A music therapy room for patients and their families.

One of the rooms all themed and painted by local artists.

The private playground that is accessible anytime day or night.

With characters to play with

and play houses.

Even family suites typically used for those with children in end-of-life care.

The sanctuary room that was just like a family's living room.  

As we walked through the facility, Gigi shared how they have had many terminal babies (even those diagnosed in utero) that have come to the facility after being born to spend their final days or even hours on earth.  With each step we took, I felt more and more confident that this was the perfect place to share this gift.

And then she showed us the memorial garden.  I tried my best to hold back the tears.  It was a rainbow of flowing memorial tiles.  Personalized to show the special qualities each child possessed, some characters, butterflies, doves, cupcakes, even a tiny baseball in memory of a special boy that said... "Free now to run the bases."  I held back my tears.  Grief and loss are so unique to each person and so similar in the pain.  I hurt for that family.  In that space, it was clear just how many lives had been touched by Ryan House and how many now run free in Heaven.

As we wrapped up our tour and talked about ways we can continue to partner with Ryan House in the future, I was unable to stop thinking about another story Gigi had shared.  As we presented the gift, she shared that they recently had a family stay with them who had to say goodbye to their 2-month old baby. Hearing her share, my mind went to Jennings and how my world would crumble if I had to say goodbye to him or any of the other kids.  Gigi did not share the details other than to say that the gift we left with them today would become a great comfort for families like them.

In my mind I created a picture of that family and had a vision of myself looking down on them from above.  I watched the mother cradling her baby, as the dad wrapped his arms around his wife.  I watched tears flow from all their faces and could read their mind as they begged for time.  Perhaps this vision came from our living experience, perhaps it is because I know we are not the only ones to live it.  And then I pictured the family with their baby in the Cuddle Cot, with extended family members at the side of the parents. Final moments together with their baby.  Peaceful moments.  Cherished moments.

Walking out the door I looked up at the cloud filled sky...thanks Noah I said in my mind.  While I hope no family ever has to say goodbye to their child, it is not the reality of this world.  Thanks to the caring support and kindness from Campbell's Crew Cares and so many who donate to support their causes, we are able to give the gift of comfort to help other's in their darkest hours.

Ryan's house has so many incredible features I could go on and on, but as we walked through the "house" there were a few pictures that stood out to me.

It is my hope that through the gift of the Cuddle Cot families can find peace in the final moments with their loved one. 

What an honor to share and learn more about Ryan House today as we begin to celebrate this year's Noah's Kindness Project. 

Until next time,

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