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.


Wednesday, August 17, 2016

Grace

It was recently brought to my attention that some people don't realize I still update this blog.   I don't do it often, as time goes on I find less and less things to talk about. I still update though, randomly and sporadically as things come up that I think I should write about, usually every few months or so.  I especially don't want people who come here looking for help to think I'm not here anymore. I'm still here.  I'm still listening.

Today I received an email and it prompted this post. It's comments and questions I get in emails often, and I'm happy to continue answering those same questions in more detail via email.  I also want to post it here for those  who may not be ready or comfortable reaching out.   It was a mom who chose to terminate when faced with their Potter's Syndrome Diagnosis.  She was struggling with that decision and had a lot of unanswered questions about a chance of survival if she had chosen differently.  She struggles with the choice to terminate instead of carrying her baby boy to term.

If you've read my journey, you may already realize that ultimately I made both choices.  I carried Gabriel to term, then at 36 weeks had to make the choice to induce labor so that I could have the natural delivery I wanted for him and to hopefully get to see him before he passed away.  I made both choices, neither choice was easier than the other. We also chose comfort care for him, meaning we wouldn't intervene to try to keep him alive  longer - we already knew what the outcome would be.   I often wonder what would have happened if we had chosen to put him on life support, maybe his lungs would have developed enough to keep him alive. Maybe he could have lived long enough to qualify for a kidney transplant.  I don't dwell on this curiosities though, because I know at this point there has only been 1 long term survivor of BRA, and that survival is one that is well beyond my understanding. Babies with the same treatment have not survived.

So there's a few topics I want to chat more about here.



You are not alone
First things first. I'm not here to judge the path you choose. If you chose to terminate instead of carry to term, you can still contact me for questions or support. I feel like maybe I've isolated those who didn't carry to term, and that was never my intention.   Regardless of the ultimate choice, you have to make the decision that is best for you and your family in the moment.  No matter what that choice is, it's the right one.  Regardless of what that choice was, it was a hard one.  Neither direction is an easier route than the other.  If I could tell these mom's one thing, it's please do not dwell on the choice you had to make.   It was a personal choice, one you had to make for yourself, your family and your baby. You had to dig deep and think long and hard about which direction to turn when both paths lead into a deep dark scary cave.

Grace
I'm told often how gracefully I handled the pregnancy and life of Gabriel.  The truth is it wasn't always graceful, but I allowed myself that. I gave myself  the grace to allow weak moments to happen naturally and doing that gave me space to be recomposed for the next moment, whatever that may be.  This is a journey that most people cannot fathom. You've had to hear words and make choices that most people can never grasp.  If you are just on the start of this long journey or maybe in the middle, give yourself grace!  Give yourself grace to be weak, to be a mess. Give yourself grace to stay in bed a little longer to cry. Give yourself the grace to grieve as long as you need to. Give yourself the grace to smile if you feel it, or laugh if it happens.  Give yourself grace to feel whatever emotion you are feeling as you are feeling it.  Give yourself that grace because when you come out of that weak moment, you are going to come out recomposed  and ready for the next moment whether that's a happy one or sad one.   Little by little those weak moments will be less and less, but you'll find yourself stronger and stronger.

Surround yourself with people that are going to give you compassion.  People that are going to join you for a cry in bed for a few hours before pushing you into the shower because you stink.  People that will pull you in for a hug when you break down crying as you walk by the baby section of the store.  Nobody can tell you the right or the wrong thing to think or to feel right now.  Know that what you are feeling is whats right for you.

Milestones
Another milestone is approaching. As I scroll through my Facebook newsfeed lately, I've been seeing a lot of kids going back to school.  Evelyn will be going back in a couple weeks and joining 1st grade!!  I have a 1st grader!!

What that also means though, is that Gabriel would be starting his school journey this year. He'd be entering preschool.  That is a little hard to swallow for me.  Some of the milestones we've already passed were easier than I anticipated. I dread his birthday each year, but last year I sat and looked through his photo book as I remembered kissing his face. I cried, I laughed. We set up his tree and had cupcakes.  This milestone however, feels a lot like his first birthday. Like a huge setback in this journey.

I watch as other kids get excited about their new adventure, as I wonder past the school supply aisle, I wonder what backpack he would have chosen. What would he want on his lunchbox?  What things would he want me to pack for his snacks?  Would he want a ride to school or a ride on the bus?  What would become his favorite subject?

All these things come to mind as I ponder who he would be today.  And when I take Evelyn to school in a few weeks, I'll wonder what it would be like to be dropping him off too.

These milestones never end.  As soon as I work through this one, It'll be a point in life when he would be graduating Kindergarten, then entering 1st grade, then graduating elementary school, eventually driving and graduating high school.  I'll always wonder who he'd be today.

Thoughts for all your moms who travel this journey alongside me.



Wednesday, June 8, 2016

Updates

It's been so long since I've posted an update. It's not because I don't want to or don't have anything to post, but time is hard to come by these days and it's tough to find time to post anything!  I'm continuously contacted by parents who have found my blog that are looking for resources, some one who understands.  Although it is hard to swallow sometimes, I'm always grateful for them reaching out.  Sometimes I wonder if I've really given them everything I can.  I hope that what I have offered is enough to help them get through.

A few months ago, I was strongly considering volunteering as a photographer for Now I Lay Me Down To Sleep (NILMDTS).  They are the organization that provided a volunteer photographer the day Gabriel was born.  I went with another photographer when there was alert of a baby born with a different fatal condition.  I brought my camera and watched her work, so sensitively, carefully shooting some of the only images this family would have of their precious and beautiful daughter.  I had told the photographer my story prior to going in the room.  I shared with her the story of Gabriel and told her that if I stepped out, don't worry about me - I'd simply be gathering myself.   Walking in was hard, but soon the lump in my throat began to go down as I shared with these parents the story of Gabriel.  They soaked it in.  Possibly the first interaction they had with someone after they lost their precious child.  I held it together, I learned a lot.  I completely lost it on the way home.  It took a long time for me to recover from that experience.  It hit me even harder than I had anticipated.  Since then, I haven't had it in me to officially sign on.  I hope to someday, but I'm still recuperating from that experience now and it isn't easy.

Part of the reason for being MIA on my blog and MIA from NILMDTS and MIA from group and MIA from the cemetery is because my own photography business has taken off and I'm busier than I ever imagined I could be. Did I ever tell you that I incorporated him into my business? My logo has two stars in it, one for him and one for the baby we miscarried. Just a random side note for you.   I've also been busy chasing 2 adorable boys who are gaining independence and a precious girl who just graduated from Kindergarten.

She graduated Kindergarten.  How on earth did that happen?  My goodness, mom always told me not to blink or I'll miss it. I guess I blinked. She's getting so big. I wonder what it would be like with Gabriel graduating pre-school and going into Kindergarten next year.  I hadn't thought about the fact that he'd possibly be starting kindergarten next year. Ouch.

As I mentioned, I haven't been to the cemetery recently, although I plan to go soon.  We live farther away now and it's not as accessible. Beyond that though, I feel like he's here with me.  I feel like he's around and going there is simply to check in and make sure his spot is cared for.  Sometimes I do feel the need to be close to him, but I have the container with his hair hanging in a shadowbox above my desk, thats about as physically close to him as I can get.

Our support group took a bit of a break for a few months, but the last few they've gotten together.  Sadly I keep getting tied up in so many other things, I haven't been able to go back.  I'm hoping to attend this month if I can find a babysitter for the evening.  I want to go back as I feel like I do have a lot to talk about, it just hasn't worked out for me recently.

I browse the Facebook app "on this day" which takes me back to the early days of my activity on Facebook.  Usually I look forward to the memories and anticipate which milestones the kids hit on any given day.  Recently I've seen a lot of my blogs showing up.  I read them.  I go back to read about whatever stage I was at on any given day.  Most of the time I can't believe I wrote the words I read, did I write that??? I guess I did.

I logged in to my blog today and was shocked to see the number of reads my blog has now. 145,767.  Woah, that number is SO much bigger than I ever anticipated it would be.  It was started with intention of keeping friends and family updated, I had just got my + pregnancy test for Gabriel when I decided to start this.  It turned into a blog about healing and grieving because, well... life.   I can only hope that every single person that clicks on a link for my blog has learned something. Has taken something away from it, (preferably something good - see a few posts back).  I hope they are able to understand better, feel comforted if they are in a situation and fearing the loss of their child.  I hope they are warmed by the words I sit down and write each time.  It's sometimes hard to read, it's really hard to write. But I know someone is reading it and learning, understanding.

If you are reading this post, I hope you'll email me, or comment.  Tell me that you understand better. Tell me something you learned, whatever it is. Tell me you read it.  Let me know that I'm helping someone, somewhere.

I still feel Gabriel with me, although not as much a before.  I always know when he's near me though,  I don't know how I know, I just do.  I always ask him to be near me when something big or nerve wracking is happening, and I always feel comforted.  My favorite though is to stand in the warm sprinkling rain, I look up at the sky and think of him, his smell. His face.  I always feel closest to him when it rains.

I guess it's time to end this ramble.  I have one child in bed sleeping, one cuddling up next to me and one losing it because he is overtired.  I wonder what Gabriel would be doing in this scenario.



Monday, February 15, 2016

Confusion

I'm always in a state of confusion.  I definitely don't feel like I'm finished having babies. We have 3 beautiful kids, but I'm not convinced that I'll never be pregnant again.  I'm not convinced I'll never hold my newborn or breastfeed again.  However, my husband is DONE. He's sure he's done, and is adamant about it.

4 months ago, my very close friends had their little baby.  6 weeks ago my brother had my new nephew.  Last week my best friend came over saying she wants to settle down and have a baby/family.  My sister is working towards adopting. A couple of our other friends have recently been talking about adopting and now, we got a call that our 2 other friends are pregnant with their first baby.  That means literally ALL of the people I am close to are expanding their families.

I've come to the conclusion that I'll never feel complete. Gabriel isn't here so I'm really not complete.  Doesn't mean I will or want anymore kids, just means my heart isn't whole.  After talking to some people I've come to realize that it will likely always feel that way, I will always feel like something is missing, unfortunately having another baby won't fill that hole, it won't suddenly make me feel complete.  

So now that I'm surrounded by pregnancy, infants and adoptions and have no plans of having more babies of my own anytime soon if ever, I'm going to sit here and wallow in the sadness that I feel for a bit and then I'm going to enjoy every moment that nears us closer to the freedom that comes with kids growing up.  I'm going to focus on my new workout regimen and get myself happy and healthy.

I'm grateful for what I have, I just never envisioned struggling so hard 4 years later with each pregnancy announcement that comes by.  Maybe someday it'll be easier.

Wednesday, December 30, 2015

Birthdays and Holidays

I'm going to do a bit of a long update because it's been awhile.

2015 has been a hard year for multiple reasons.  We have survived a significant move to a neighboring town into a much better house for us.   Although I will miss being less than 2 miles from Gabriel, it is nice that we still aren't too far away.  The neighborhood is nice and our family is much better fit in the new place.   Of course we have Gabriel monuments and memorials throughout our new home.

Over the course of late summer/early fall we experienced a few more losses, tough ones.  My dear grandma passed away in August.  This loss was devastating for me as I've always been close to my maternal grandmother. I found comfort in knowing that Gabriel would now experience the grandma I knew and loved so much.   Her death was not a surprise, there were multiple things leading up to that time. I'm just glad I got to see her and spend some time with her in the days and hours leading up to her passing.



My mother in law had a long and courageous 9 year battle with cancer. She was a fighter and was able to continue on living, even with the chemo and other treatments.  In November her body did not react well to the new chemo regimen she was on and she landed in the hospital where she would stay. Although this death was somewhat expected, it was still a shock as we weren't expecting it so soon.  Just weeks before this happened she was doing very well and had been out running in the sprinkler with my kids, enjoying life on river cruises and other vacations.  That chemo treatment took her out fast and we were all a bit surprised.  Her passing - especially being so close to the passing of my grandma - was very tough for our family.  It is comforting to know that although my surviving children have lost 2 grandmas, my Gabriel has gained 2.  I know those two lovely ladies are up there spoiling him with love, although our hearts remain broken here. In the last moments I had with Gail, I asked of her the same thing I asked of my grandma." Please give Gabriel a special hug and kiss from me, tell him how much I miss him and that I'll see him again someday." For Gail I added "Take care of my little man, I'll take care of yours."





Through these losses, I've learned how much Gabriel's death has effected Evelyn.  She handles it death and loss like a champ.  We always try to put it in a positive light "We'll see grandma again some day." or  "Grandma is going to take care of Evelyn for us till we see them all again!".   For Christmas, the only thing she asked from Santa was a photo of grandma Gail for her bedroom.  Through a joint effort including a heartbroken auntie, Santa came through. Evelyn couldn't have been more thrilled. But we were so heartbroken. It's so sad to know that she gets it. At 5 years old she understands more than she should. It breaks my heart and makes me miss these beautiful ladies even more. Evelyn has glowing stars on her ceiling and one night caught me completely off guard "mommy, you see that star there? The one by the little ones there? I'm going to name it Grandma Gail because it shines so bright."  Instant tears fell.  She is so sweet and absolutely wise beyond her years.

I don't want my kids to experience loss, sadness and heartache. Especially at such a young age. But it's a part of life and they handle it with grace.

Gabriel's birthday this year was a bit tough. He would have been 4 years old.  I had a tough time holding it together throughout the day as my mind wondered to sights of him, the way he smelled and felt to the touch. We told Evelyn that it was Gabriel's birthday and that we would go to the cemetery to put up his tree and celebrate his life.  I don't think she quite understood what that meant.  She was excited all day, dancing around the house saying "It's Gabriel's birthday!"   We dug out his Christmas tree and went out to adorn the cemetery with holiday cheer.  Although it helps brighten that day for me, it's still so sad.  The cemetery looked beautiful with his bright white tree shining for all the babies that rest there.  Evelyn was disappointed. Although I bought cupcakes to have after setting up his tree, she was upset that there wasn't more to it.



Christmas day was tough. I wasn't feeling jolly, happy or in the spirit.  When Evelyn opened her photo from Santa she was so excited. She exclaimed "A photo of Grandma! It's what I wanted! For my room!"   Daddy lost it. His heart hurt and was broken still.  My heart hurt but I held it together so D could have the moment he so desperately needed. Holidays are so hard with so much loss in the air.



This Christmas day was different however.  Over the summer, my sister in law became pregnant with triplets. Sadly she lost 2 of the babies at around 16 weeks. She continued on with the 3rd baby and her due date was set for Christmas day.  The pregnancy was emotionally tough, you could see it on her face.  In the afternoon hours on Christmas day, She went into labor.  She had asked me to attend the labor and delivery previously.  Little did I know she would go into labor on Christmas.  It was a quick 3 hour labor and she was surprised with a little Christmas baby boy!  Helping this little guy into the world on a day that was so tough to get through, really brought some happiness and peace to the season.  My family needed that positivity this year.

For now we are living in the moment. I cherish the sadness, tears and hurt as a symbol of how much these wonderful people have meant to me.   It's not easy to grieve, to hurt so much.  We are looking into 2016 with a positive outlook and hoping for great things this upcoming year.

Monday, August 3, 2015

Welcome to Holland

I'm going to jump to the point of this post and do a more personal update later.

People often ask me and praise me for how strong I was during our journey. They often ask how I stayed as strong as I was, the truth is I wasn't always that way. I definitely had moments of deep desperate despair.  When I read this essay my view changed though.  I went from feeling lost and hopeless, to seeing the brighter side of things, at least as bright as it could get given our situation. I began enjoying Gabriel's presence and cherishing the time we had. Here's how it came to me -

While navigating our lives after Gabriel's diagnosis a local woman got in touch with me. She was traveling a very similar journey and with very similar timing.  She shared an essay with me called "Welcome to Holland".  This was a turning point for me and I'm SO glad she shared it with me.  She uses this a lot when talking about her own journey though loss and every time she posts it, shares it or talks about it,  I smile.  I'm grateful of the positive reminder.  It was a very uplifting for me and changed the direction of my path dramatically.  I hope that this is something that will help others - so I'm passing it along to you.  I believe it was written for parents of children who have special needs, but it fits VERY well into any seemingly devastating situation that doesn't go as planned. So I know sharing this will help more than one type of person.

I don't take credit of the beautiful display. I found it on google and loved it. 



Tuesday, February 10, 2015

Travesty Fraud and Devastation

I feel like I need to respond to a situation that has occurred. If not to the person who did this, than for myself and those who know me as well as past and future readers.  I feel the need to acknowledge the situation and make it known - If we haven't already been to hell and back, someone has opted to make the trip significantly longer for us.

At some point a woman from southern Tennessee (we'll call her Amy for privacy sake) stole photos from my blog and fabricated her own pregnancy. She could have revealed her miscarraige at any point but instead, she pretended her way through an entire 9 months and on February 3rd, Amy's daughter was born and died 36 minutes later (the same amount of minutes Gabriel survived).  She posted a photo of Gabriel and used it as her Facebook cover photo claiming it to be of her new daughter who passed away from kidney failure. Later she would go on Facebook with her story and receive donations from warm and loving strangers who felt a sense of heartache and desired to help her. They gave selflessly and generously.

At some point, a couple caught on to her scheme when they saw Amy's cover photo in a Google search that led them to my blog.  This wonderful couple collected all the information they could before everyone found out and chaos ensued. How blessed am I that this loving couple had thought to gather all the documents and proof silently before everyone else revealed Amy for who she is. The wife contacted the local authorities with all the proof, she knew who this person was that was doing this. After meeting with their local authorities she contacted me via email.

Her words were loving, sympathetic and heartfelt. A gentle voice to share heartbreaking news.  I read the email multiple times over, grateful she had already taken the steps to alert the proper people before dropping this 10,000lb bomb on me.  Immediate action wasn't necessary. Amy had already been called out on her fraud and the authorities were already alerted to the situation.  I was able to process all the emotions that went through me as each word repeated over and over.  

I feel eternally grateful for the wonderful woman who felt the need to contact me, and also took hours out of her life to protect me.  I'm grateful to her wonderful husband for assisting and supporting her.  I feel hurt that Gabriel was so disrespected in such a fraudulent way.  I feel angry that someone would do this. I'm flattered that she thought my baby was so beautiful she wanted to claim him as her own (I mean lets face it - he was stunning and if he wasnt already mine, I'd want to claim him too). I'm pleased knowing that with my blog posted all over their local Facebook pages, someone somewhere would have seen it that will benefit from it. I'm also pleased that this woman will get what she deserves and all the loving people who so generously gave their money to her will get their justice, whether that's legally or karmatic.  

I'm also utterly disappointed in some people that make up the human race.  I always knew there was risk in posting photos online and publicly.  People steal photos all the time and use them for many reasons. I had thoughts of watermarking all my photos, but a) by the time I thought of it there were way too many to go back to and b) my experience in the photography industry has taught me that watermarking your photos doesn't actually protect you, at least not entirely.   Despite knowing the risk, I felt it was more important that the families who came to my blog with a similar fatal diagnosis would see that these babies do look fairly normal. I remember fearing that Gabriel would look different or deformed.  I posted the photos to ease other parents hearts and minds, and through feedback I know families it has helped. I had however hoped that if images were to be stolen, they would be of my living healthy children. I had hoped that people would have enough respect for the dead that they would leave his alone.  

Amy has made a mockery of all the families that experience infant loss. She's made a mockery of the greiving journey so many of us heartbreakingly walk. She's disrespected every family that has REALLY experienced this heartache.  

I had thoughts of removing my blog or all the photos within it, but I won't. My blog has well over 100,000 views. My blog has helped dozens of families who have since contacted me.  My blog is here for a reason and I can't fathom removing it from future parents who may need it, or that person who hadn't lost a child but now understands. Everyone has taken something with them as they walk away, and that is much more important to me than some unstable woman possibly stealing my images. 

I had faith that people would have enough respect to leave these precious and personal images alone, but alas I hoped wrong again. 

I am an emotional victim in this situation, but the real victims in this story are the loving people who donated generously to her. Another victim is her husband, who seemingly had no idea of her deceit and thought his baby girl had died.

Her side of the story is heartbreaking as well. She says she had miscarried early in her pregnancy but didn't have the courage to tell everyone. She went on with her pregnancy as if nothing was wrong, even had a baby shower. She got so wrapped up in her own web of lies that come her due date, she needed a way out. She seemingly chose Potter's Syndrome at random and through Google found images to use. She claims she never received anything and and the things she did receive were returned to the sender. I have no way of knowing the truth, although I have seen and hold in my hands her posts to Facebook. It sickens me to read her journey and the way she deceived everyone she came in contact with causing them to believe her misleading stories.

At this point the police are aware of the situation, but unless someone comes forward with fraud charges or proof that they sent Amy anything of monitary value, their hands are tied. It's sad that people including her get away with similar acts of fraud and never get charged with any crimes. 

My heartaches, I'm heart broken and have been disrespected in the worst way. I hope nobody ever has to feel the pain I feel because of this woman.

My message to her: Believe me when I tell you that Gabriel's story is not one that you wish were yours. Having precious photos as your only way of remembering what your child looked like is not pleasant. Having to say, good-bye sucks.  This is not a journey you wish to travel or want as part of your life. Burying your child is pure hell and no person should HAVE to endure this kind of pain, and no person should WANT to. The attention a parent receives after their child is ripped from their arms is not the kind of attention you want, it's the kind of attention that is uncomfortable and akward, its filled with pain, tears and gut wrentching apologies. I'm sorry for the loss you've experienced, I have also experienced a miscarriage and remember that pain all to well. I will never make excuses for what you have done, but I can have a certain amount of understanding for mental instability. I hope you find the help that you so clearly need to seek. I'll be praying for you.

The photo is found here: http://mnmom4life.blogspot.com/p/potters-syndrome-bilateral-renal.html