Dear Friends,
Little things that bring brought me sweet joy today…
· Coffee with cream and SF syrup—salted caramel of course. I never liked coffee <<AT ALL>> until Millie got sick. Now it is a daily pleasure!
· Precious friends that help me when I get in a bind. Today, one friend babysat SJ and Little Man, another took Abby to her class painting party.
· Getting to road trip to Missouri with Katherine and a friend for her volleyball tournament tomorrow. We are in an Air B&B that is so cute and comfy. It is my first time staying at one and I wonder if I will ever use a hotel again.
· Time writing tonight after drinking WAY TOO MUCH COFFEE for the day…
· A Hubby that stayed home to take care of our other children so I could take this trip.
· Soft music like “Lighthouse” from Scripture Lullabies. Listening now because I can still focus with it playing.
· My ‘new’ grey fuzzy house shoes… Also am wearing my “Mama Bear” shirt one of you sent to me.
Things that do not bring me joy…
I have one thing that I witnessed today that does not bring me joy. It is probably not worth mentioning except it brings light to something we families struggle with as we try to be transparent about our lives, especially our cancer journeys. I am going to share it in part, though anonymously because my point of sharing is to address the behavior, not the commenter.
Today I had a fellow cancer momma friend, Levy’s mom that posted a video of Leavyn getting her ‘port’ accessed this week. She posted it for two reasons:
· to bring awareness
· 2) to document what a brave overcomer her precious little one is.
Someday this virtual journal will be the very thing that shows their family how God sustained them during this very difficult time of their lives.
What happened today is the epitome of internet rudeness. One of the commenters started criticizing Levy’s momma for posting the video. She accused her of posting it for her own personal gain, saying “Seems more like Mother’s journey than Leavyn’s”. Reality is we cancer mamas have nothing to gain by being so transparent with our lives other than begging for people to pray for our babies. The journey is one that affects the whole family and is hard on every single member. Yes, some people do send money or gifts, but I can ASSURE you none of us want anything more than for our baby to find healing. These gifts bring the children small amounts of joy in the midst of grueling hardship, but it does not make it better…nothing but healing makes it better! Even then the long-term side effects, scars, and PTSD will be present forever in both the kids and their parents.
This lady proceeded to tell my friend in part that, ‘I am older than you and know more about cancer and the care of family members with cancer.’
My response to her thoughtless comment was, “all I can say is I am sorry if you know more about cancer than a momma that is standing beside her baby as she walks this journey. A journey that will either bond a family, destroy a family, or both. As another cancer mama whose child did not make it, I would ask that even if you are far more knowledgeable and have watched hundreds of babies die, that you refrain from questioning those of us in the journey. Each day is survival in a walk from hell (as a Christian I do not use that word lightly). Levy’s momma is doing what is best for HER child...not yours and not mine. Be an encouragement or consider biting your tongue.”
I hope my response was filled with GRACE first and TRUTH secondly. The comments that are made, even if just off handed, HURT others’ hearts. As ‘cancer mamas’, we are doing the BEST WE KNOW HOW in a time that no one truly knows how to navigate. As a ‘grieving mama’, I too am doing the best I know how. It will not look like someone else that is grieving-- we are all individuals, and we all process our loss differently. All I can offer is the hope that I cling too—a relationship with Jesus and him sustaining you.
Blessings sweet friends…
｡･:*:･ﾟ★,｡･:*:･ﾟ☆ ｡･:*:･ﾟ★｡･:*:･ﾟ☆
I still believe in Millie’s Miracle
｡･:*:･ﾟ☆ Hebrews 11:1 ｡･:*:･ﾟ☆
︵‿︵‿୨☆୧‿︵‿︵
#MilliesMiracle
#Forever3
#WithJesus
#Neuroblastoma
#ChildhoodCancer
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