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Approaching this moment where time completely stopped a year ago - I know I would not sleep tonight - I will surely stay up and mourn, for this night was the night that my phone tucked under my pillow for a week would ring.
We had just settled into Jacksonville for Proton radiation and everything felt wrong because my dearest friend, my sister through cancer boot camp was not there before me as planned. I remember for two weeks leading up to this night the I tucked to phone under my pillow in fear I would not be reached if she called me. So I kept my phone charged answering any text or call, in my heart just wishing I could be there with her, but you see she knew my heart and knows I was there as much as I could be.
I had planned to come in to see her that weekend regardless .... But God had different plans and I am learning daily - that's how it all works, God's will no matter what the circumstances.
At somewhere around 3:40am the text came - I knew it was coming, but it didn't help the pain ... My sister Nicole lost her son and Baby Wade took his last breath at 3:33am. Around 3:55am we spoke ... it was simply numbing, her pain was filled temporarily with relief because his suffering was great.
She created a video to commemorate Baby Wades 13 months of life. She carefully chose photos she loved and lyrics to songs she loved along with live footage - this is a huge deal for someone that isn't online savvy ( it's beautiful) and I share this with you along with post she shared a month ago. I see this post differently ... I held this paper in my hands and sat on her steps to read it. It is so profound .... I miss you baby Wade .... I sat next to your Amazing Momma at your service and gripped her arm .... You see my dear friend tries to hold it in, but I know her heart and the love she held for you was beyond immeasurable, so tonight I will sit up and look outside for a falling star - the same one I saw when I went outside to my condo baloney in Jacksonville and saw while I prayed moments after I knew you were gone... This happened almost every time I talked to your Momma late night during my Florida stay.
Arguably, this blog or website is about my view ... Nickys Momma .. so sometimes maybe I share too much --- but this letter no parent should have to get .... but I was grateful for it - it can show what we should all aspire to achieve with compassion.
I have been thinking about the night he left us a lot lately, one of the many perks of a grieving parent, you never know what thoughts will return to rule your mind at any given time. And of all the horrible images and sounds that last 15 hours left me with, there is one incredible act of kindness that still brings me comfort. Anytime I think of it it makes me cry with a mixture of happiness and sadness. Sad that it was when I told my son goodbye but happy to know that people like the ones I will tell you about are out there, they walk the same earth and breath the same air, and it restores my faith in humans. I feel sure it is the single most kindest act I will ever witness in my lifetime, and from people who didn't know us at all. I had asked our hospice nurse Brandy what would happen when the time came, who would come to take my son's body. An image of a coroner and a stretcher wheeling through my house was just unacceptable. She called the funeral home and it had already been planned, a couple who lived not to far down the road would come and get him, the husband would drive while his wife held Wade on the way to the funeral home, they had even bought a special blanket for him. This made me happy. So when the time did come, at 3:33am on October 2, 2010, Brandy made the call, they would be there in a half hour or so. As I held my son for the last time, rocking him, kissing him, trying to keep him warm, they arrived, They were an older couple, and at 4 something in the morning they were dressed in their Sunday best. The husband came inside as his wife stayed in the car. As I walked out of the room he told me his wife was waiting for me in the car, so I walked outside and saw her sitting there with the door open. I kissed Wade for the last time and handed my baby to her, she didn't say a word, she didn't have to, she had the kindest face and eyes, they spoke for her. She kept him all wrapped up in his blanket and held him tight and I shut the door and watched them drive away. I could see her love for him even though they were complete strangers, I was in awe at their kindness, I felt God had given me this last big gift after the total hell we had just experienced. Early the next morning the husband came and dropped off a card and a gift. His wife had written the card after she returned home, as the time she wrote on it was 5:30 am. Her handwriting and stationary are equally beautiful. Baby blue paper with three little angels at the top. I want to share the letter, even though it is such a private treasure and I would never reveal their names, it was just so life changing for me, you never know how it may impact others as well. Here is her letter.
Dearest Nicole and Wade, When we received the call this morning, I knew I had to go with him to hold your precious "Little Boy Blue". As you placed your son in my arms, I knew how your heart was breaking. Before you came out of your home, I glanced into the Heavens and saw the moon - a crescent moon, and it reminded me of a cradle - God's cradle, and He is now cradling your precious little boy in His Loving Arms - free from all pain. And I rejoiced in knowing that he was now a healthy, happy little boy. No more tears nor pain. I wanted to say something to you - give you a hug, but my heart, too, was to full to speak. So on the way to the funeral home, I held your son close to my heart and told him what a sweet little boy he was and that he had put up such a courageous fight. Oh, he was soo precious in his little tiger shirt and dungarees. I lovingly caressed his tiny hands and squeezed his little feet and kissed his forehead - once for his mom, once for his dad, and once for his sister Lauren, and then I cried - thinking of the little boy he could have become one day. But God had other plans for "our Little Boy Blue" far greater than we can ever imagine. But someday you'll know the answer. Just know that you and your family will be in our thoughts and prayers and forever in our hearts 'cause...We Love you
So we celebrated his real birthday September 22nd with just the 4 of us, hording our special day away with just ourselves - we wanted it this way because we wanted everyone to focus on the WALK on Saturday.
(This photo to the right is the writer a year after diagnoses 2009) My heart is with the suffering—those who are grieving a loss– those who are fighting for their lives– those who are helping loved ones fight for their lives. With everything in me, I want to be a building block for change that will relieve suffering. I want to notice when people suffer and not turn away. I want to be grateful for all of the people who give me love. I want to be especially grateful for those who are close to me; the people who will always and forever love me unconditionally.
So this was our quickest trip to date at Jude arriving at 8:30am and going straight to the Grizzle House. Upon finishing our first day I saw a man entering the elevator and he had big rubbermaid tubs and so I said to him,"Looks like your moving in..." His reply was, "yeah for the next 4 months..." immediately I knew this child was more than likely on my protocol. So I ask, "under 3? " and he said, "yes 1" ..... His daughter was diagnosed with the same type of cancer as Baby Nicholas and the next day was their first day there. I always seem to find a *new family* and it always gives me great comfort to give comfort to those that are just entering this journey. Lord knows I wish and pray no one had to enter this world of pain ... but if I can just help ease someone's stress a little .... share our journey - than all the typing I do here on this blog is so extremely worth the effort.
Baby Nicholas' health is that of a healthy 23 month old little boy and has his temper because we spoil him so much ... but he is a picture of health and to us that is a blessing. Every time we enter Jude we are quickly reminded of how much worse our lives COULD have been and we pray be NEVER have to go down that path EVER again. But going there humbles you all over again, it makes you greatful for so many things even in three months you start to take for granted again. Hearing a child's raspy voice ... I remember not hearing my son for months and praying to God to please heal his vocal cords. Or seeing the endless bald babies and children .... its tough that WAS us!