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Showing posts from 2020

Thank you | Two more CuddleCots

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Thank you! With a grateful heart, for a sixth year in a row, our donors have gifted two CuddleCots.  One will be sent to Kosciusko Community Hospital in Warsaw, IN close to the You Made Me Mom Milford, IN chapter.  The second CuddleCot will be donated to a hospital which will be determined in the near future.  If you know of a hospital in need, please email me (amy@youmadememom.com).
Thank you for loving our family so well and remembering Simon.
Through generous donors, our family has donated cots to the following hospitals: -St. Luke's Hospital Kansas City (2015) -Children's Mercy Hospital (2015) -Truman Medical Hospital (2016) -Research Medical Center (2017) -St. Luke's Hospital North (2018) -St. Luke's Hospital South (2018) -Regional Medical Center in Anniston, Alabama (2019) -St. Luke's Hospital Kansas City (2020) -Kosciusko Community Hospital, Indiana (2020) -TBD Hospital (2020)

COVID-19 Thought Journal | May 21, 2020

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Today was Simon's last day on Earth 6 years ago.  I can remember that day.  It is amazing that each of his seven days are still distinct in our minds.  Certainly the blogs, photos and the videos help us retain those specific moments.  But the moments were little.  The days were slow.  We stayed cooped up in our house. The music we played was important.  The natural light through our windows was energy for our tired bodies.  Teddy was an escape - during and after Simon's life.  We wanted to see everything through his eyes, to put on his cloak of innocence.
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As I think back on this day, I feel like we knew it was nearing the end, but it was still a shock.  Nothing is more shocking than holding someone as they take their last breaths.  Nobody held Simon that day but Amy and me.  The rise and fall of his chest was more labored.  He was less hungry.  Less talkative.  We soaked him in as we soaked in the sunlight from our windows.  We cried mid-day - not with sadness or pity - bu…

COVID-19 Thought Journal | May 18, 2020

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Life is thick with irony during this time.  What we have come to expect to see and to experience has now become the opposite in our current reality.  These ironies are beautiful in so many ways.  At the very least, thought provoking.

The "mothballed" giant public high school that has been vacant for years in our neighborhood normally sits like a monstrous sculpture meant to remind us of our past sins and failures. Outside the occasional dog-owners playing fetch with their pups, you don't see to many people on Southwest High School grounds.  But over the last several weeks, I've seen kids taking over the old long jump sand pit with their toy dump trucks and plastic shovels.  There are soccer games and flag football games.  Grown men are flying kites.  People jog around the old dirt track.We did quite a few family bike rides prior to this.  Brookside is a pretty active neighborhood for bike riding.  But now the streets are flooded with families riding bikes together.  …

COVID-19 Thought Journal | May 16, 2020

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I'm actually semi-excited about flipping-on German Premier League (Bundesliga) soccer this morning.  There won't be any fans, which sucks quite a bit of the energy out of it.  I've watched Bundesliga before, and the fans are incredible.  This is a fairly pivotal moment for sports, as it is one of the first major (spectator) leagues to return.
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I got my hair cut yesterday for the first time in probably 10 weeks.  It was freeing to do something that was never questioned and never feared previously.  I still don't fear or question going to the barber, and never will.  I do miss my mullet.
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We're considering a change of scenery.  With no pools opening or camps (likely) this summer, we need something to look forward to.  We feel blessed to have our house, and it continues to serve us well.  It is a place of comfort, entertainment, work and safety during this time.  But it starts to feel like it is shrinking around you as you contemplate doing this same thing for the…

#simonsgiftoftime2020

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Tonight we begin the sixth anniversary celebration of Simon’s life.  On May 14, 2014 at 9:55pm, we welcomed Simon Adam Balentine into this world.
Year after year, my mind travels effortlessly back to the moment Simon was born.  Simon had a diagnosis called Trisomy 13.  Because of his diagnosis, we weren’t sure if he would be alive as we decided to forgo fetal heart monitoring during labor.  We thought if he died before/during labor, it might be hard for me to continue to labor knowing his soul had been taken already.  He was alive at birth, eyes wide open, arms and legs squirming.   My OB placed Simon on my chest and all of the prayers from the previous five months had been graciously answered in that moment.  He breathed!  I shouted praises to God thanking Him for his mercy.  It wasn't long after his birth that we finally heard his voice.  It was heavenly (this video shares his sweet cries).
Following Simon’s birth, all we wanted was time with him.  It was simple.  We we…

COVID-19 Thought Journal | May 13, 2020

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Tomorrow is Simon's birthday.  He would have been six years old.  What would life have been like with him here, still alive?  I struggle to play out a scenario where he wasn't sick.  I can't fully separate Simon from his physical challenges.  His cleft lip, his superior toe and finger counts, his tiny body with a brain and heart that were specially challenged.  Those things are beautifully him.

So had he made it to six years old, we'd undoubtedly be living differently.  Perhaps our every day up until now would feel like we were social distancing.  Children with challenges, like Simon, who live past infancy typically have weakened immune systems.  We probably wouldn't be traveling like we do.  We may not be living in this house, as it would make more sense to have a house with a first floor bedroom.  Who knows if Peter and Goldie would be in our family.

The story of Simon's life is not something I desire to change.  Perhaps that's strange to say.  I'm n…

Baby #6 in heaven with Simon and Thomas

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Last week I miscarried our sixth baby.  I was so happy to finally see a positive pregnancy test after trying to grow our family for quite a while.  I was five weeks along and I refuse to call it an early miscarriage.  I have noticed through leading You Made Me Mom support group that labeling a loss as early the loss feels less significant - it also begins to compare - one thing you should never do when you are walking through grief.

The pain physically was very manageable for my body and I am thankful for that.  Thomas' miscarriage was more challenging for my body.  My heart, however, is a different story - my heart is just so broken.  My heart and thoughts moved into anger pretty quickly, but that didn't last long because anger doesn't fit me well.  So I tried on gratitude and that fit me better.  I took off my leggings and sloppy hair and put on a dress and make up for three days in row.  I made a decision that I was going to honor this little soul's body by simply …

COVID-19 Thought Journal | May 7, 2020

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I waiver back-and-forth between wanting to abide by orders and guidance our government officials have established, and feelings of all-out rebellion.  I worry about my 95-year old grandma getting the virus and want to prevent it, but I also think we could establish guidance for protecting the most vulnerable and let the rest of us get on with semi-normal activities and job operations.  Perhaps if the media wasn't such a ragout of partisan opinions and knee-jerk reactions, I'd know how to feel.  Instead, I don't really consume the news unless it is in bite-size chunks.
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Businesses must have some kind of liability shield or protection from litigation if they are allowed to reopen.  Congress must pass this.  Unfortunately, our politicians are so focused on not letting the other side win that they can't see the logic in this.  Require business establish an infectious disease risk management plan, and then afford them liability protection if they do so.  Otherwise, the t…

COVID-19 Thought Journal | May 6, 2020

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I'll attempt to write down some random thoughts, ideas, questions, things I've overheard and even attempt to be funny.  Hopefully I'll be able to do this daily.  I'll try to do stream-of-consciousness writing with little editing.
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We gave Peter (age 4) a new clock for his room.  The first day didn't go perfectly well, as he came slinking down stairs at 6:49.  He isn't supposed to get up until 7:00.  We asked him why he came down before 7:00, and he said, "There was a 7!  74:6!"  He was reading it backwards, and he thought as long as there was a 7 somewhere in the sequence, he was good!

Last night, I asked him about his clock and if he liked it.  He said, "Yeah, I like looking at it.  But I wish I didn't have to look at it.  Because I have it I have to stay in bed until 7:00!"

He was expressing something that we all know so well - awareness of rules or laws now means you have to make a choice. Do you follow them or do you break them?

My…