Saturday, August 19, 2017

Gabriel Bear has surgery

A couple years ago, the build a bear that we made with Gabriel's heartbeat quit beating. I was sad but knew I could go in and fix it. A couple years later we finally did.  Sadly they couldn't just replace the battery so I had to pull up the blog from when we did the beat originally and re-record the heartbeat.  The original recording was on a phone that had died - I'm SO glad I posted the video on that blog so I could go back to it.  Now I'll have to re-record the heartbeat and save it in multiple places.

The new recording isnt quite as crisp and clean as the original one was, but it will do for now.  If I can pull the sound better I'll just put a new sound box in the bear again.

I also decided he needed a shirt! So now my Gabriel Bear has clothes!

Friday, July 7, 2017


I often get told how strong I was through everything and how strong I continue to be.  While I appreciate the sentiment, I hope people also realize that not every moment is full of strength.  Sometimes there are moments of weakness.

Today is a perfect example.  I feel like perhaps Gabriel is trying to get my attention and I'm not sure why.   I took the kids to a local playground today.  There was also a daycare center enjoying a day out  too.  I was watching the kids play and suddenly heard one of the teachers yell for Gabriel.  There was a little tinge to my heart upon hearing his name.  Then I heard her yell it a second and a third time, all while images of my own son scroll through my mind.

I looked around, desperate to see this Gabriel child.  A short bit later I said hi to one of the teachers and we got into some small chat about the weather and whatever else.  I randomly asked how old the kids were and sure enough... Gabriel is 5.

5 years old. That's exactly how old my Gabriel would be today.  The teacher and I parted ways and I sat on the bench.  I was watching my kids happily play without so much as a pause, but also watching this boy, Gabriel, out of the corner of my eye.  I was catching a glimpse of all the things Gabriel would be doing if he were at the park with us today, how he would be acting. Communicating. Playing. Interacting with other kids.

Tears quietly rolled down my cheek as I thought of him.

As we were leaving I thought to myself, "strength?".  This isn't what it feels like to be strong. This isn't the image that I put out there for everyone to see.  In society it doesn't feel acceptable to cry 5 years after the loss. So I brush the tears away and put on a happy tune as I drive away.

Then, while sitting and editing photos at my dinner table awhile later, I received a message through Facebook.   It was a friend who had helped me tremendously after the loss of Gabriel and always had thoughts and prayers as I travelled the journey.  A friend of hers just got a Potters Syndrome diagnosis.

I love receiving these messages.   It devastates me to know someone else is beginning the journey we started 6 years ago.  My heart breaks for them and their families and I always send thoughts and prayers to these broken hearted strangers.  The part that I love - people reaching out. People trying to help others. People who remember my Gabriel and everything we went through and they think of him, they think of me.  They think of ways to help their friends, they ask for help in how to support them and things they can do.  I am more than happy to help, to listen to these parents as they walk through the darkness they face.

With tears in my eyes and a broken heart, this is how I help Gabriel live on. He lives  through me helping friends of friends, strangers via email and even in chatting to certain politicians. He lives on through me. He lives on through helping others travel this journey.

Sunday, March 12, 2017

Just thinking.

Life Updates

Hello all, I haven't forgotten about you and I know I haven't been in touch.  Life is crazy and busy and it's hard to keep up sometimes!

About a month ago I attended the support group again for the first time in at least a year.  It was so nice to be back and surrounded by those who walk this journey too.  I listened as newcomers shared their heartbreaking stories of loss and where they are now.   It's tough to make it to group sometimes, babysitters and other life things often get in the way.  But there's nothing quite like finding a group of people who understand you.

I've been watching "This Is Us"  That show is quite the tearjerker and I didn't think I'd make it through after watching the first episode.    It's sort of like Grey's Anatomy to me though.  It's hard to watch, but I get attached to the story line and the characters.  It also brings some comfort to know that these shows are bringing infant loss to light and making it less and less taboo to talk about.  It's making people realize this is more common than we would like it to be and more people are understanding it.  Less people run away from me when I tell them I lost a baby, they empathize. They are more understanding.

Dear Medical Professionals

I've been doing a lot of thinking lately.  I was asked what would I wish to tell a group of doctors who are weighing the pros and cons of potentially moving forward with treatments for Potters Syndrome babies.  What message would I have for them.

I would want them to know that it should have been my choice. When I brought them a potential treatment, they should have given me the outlook and let me make the decision on how far I would be willing to go to save my baby.     I would not have tortured him, but I would have been willing to put him on dialysis if it meant a later kidney transplant and survival.    The main reason they refused was because it was considered experimental and therefore not covered by insurance.   I would not have had the funds to cover the treatments without insurance coverage.  The secondary reason was that it hadn't been tried/successful before.  At least 2 doctors told me that it sounded like something that would open up possibilities but that it was unlikely to work .

I would want them to know that my son deserved a chance at life.  Babies are born extremely early and are placed in some very expensive "experimental" treatments in hopes of saving their life.  Why not my baby? Why didn't my baby deserve that chance too?  Babies are born with other abnormalities all the time that would be fatal if not for experimental treatments to save their lives.

They say it is inhumane and purely experimental and that's why we shouldn't move forward.  Inhumane?  Is the dialysis we offer to adults with kidney failure inhumane?   We don't question the value of their life, we offer dialysis, which is exactly what I wanted for my child.  My child who had no other issues besides missing kidneys.

Gabriel probably would have been a prime candidate for those treatments because he didn't have any other problems.  He wasn't brain dead. He wasn't paralyzed.  he would have lived a fairly normal life had he survived.     He would have spent some time in the NICU the same way premature babies do.  He would have been on dialysis and underwent a kidney transplant at an extremely young age.  He would have been on transplant medication for his entire life and likely would have needed at least 1 other kidney transplant.  None of those things seem inhumane.  These are things we do for living and surviving people everyday.   Yet, my baby didn't deserve that same treatment apparently.

Surprisingly to me, some of my message will actually be a part of the future of Potters Syndrome babies of the future as they get shared with medical professionals by people who have more power than me.   His effect continues on!

So Gabriel has been on my mind a lot lately.    In very good ways!  I miss him, I'm so proud to have him be a part of my life.  I'm proud to share his story and hope that he will make an influence on this world, on the world of Potters Syndrome and other kidney deformities.