Saturday, September 29, 2012

Giving in, not giving up

Last week I felt like the world shoved a dagger in my heart.

 My mom is not a candidate for a transplant.

Through all the testing we discovered that her blood is "sensitized" and there are too many antibodies and antigens in her blood to ever find a donor heart that her body would accept.  The words unfortunately seem more true as I type them out, and it was slowly starting to sink in over the weekend and beginning of the week as I cried numerous times and began to grieve the loss of the hope that I had for my mom to be around for many years to come.  My mom had told me after leaving the hospital that she didn't think she would get a heart and that her time was limited.  Sometimes I want to tell intuition to "suck it".

My mom has not been doing well since leaving rehab, and so on Wednesday night we returned to the hospital for a "tune-up".  I hate hospitals.  I don't really know why I like to work in one.

After being told that the heart transplant was off the table, we started to shift our focus to quality of life, rather than quantity.  We no longer wanted the focus of each week to be doctors apts, but rather what would bring my mom joy.  Unfortunately it was hard to have much joy when she continued to get weaker and puke almost daily.  So after talking with the cardiologist, we made the really hard decision to come back to the place we now wanted to avoid forever.  The assumption was that all the nausea was from the heart failure and the goal was to come down to have a PICC line placed and to be started on IV medications that would help the heart to contract better to improve my mom's quality of life at home.

Nothing ever really goes according to plan.  After the many heart tests, it was determined that it was not from the heart failure and that they do not want her on those meds at this time.  Instead my mom was very dehydrated and needed iv fluids and a blood transfusion.  We had high hopes of going home on Friday after the transfusion, but they started antibiotics for her foot, and unfortunately she was not able to keep them down.  So after being given our discharge instructions and packing up all of our bags, we were told that it would be best to stay at the hospital until they figure out the nausea.

Mentally, I got it.  But emotionally and physically I was wrecked.

Over the past three days we have made some really hard decisions.  We got to speak to the specialists that place the heart pumps, and she was able to decide that it wasn't a good option for her.  Besides a transplant, that was really our only life saving measure on the table, and it really wasn't a good option given her current condition.  So my mom also decided to sign a DNR and to have the defibrillator turned off in her chest.

Please just turn the dagger that was in my chest.  Granted, I fully back and support my mom's decision.  It is the same one I would have made for myself.  But it doesn't make it hurt any less to live in this reality.  It doesn't make me any less furious with God for not taking my mom when she was coding three months ago.  I am so grateful for the conversations we have had since then and the support and love that has been given to my family, yet it has been do incredibly difficult to watch my mom walk this road.  Knowing my mom was fully and comfortably sitting next to her God would have been a much easier pill to swallow.

So this is the new road that we are learning to walk with grace, or cuss words, whichever I may feel like in the moment.  Because as I bring one life that I will surely love and cherish into the world, I am on my way to losing another.  The hardest part is not knowing if we will have weeks or months or years, or what that time will look like.  I hope and pray that my mom has the strength to truly live out the rest of her life, to not have to sit in a bed puking all day, but to be able to come to my delivery, go to a pumpkin farm, and spend time with people that love her.

As I was hugging her goodbye yesterday so that my cousin could stay with her for the night and I could take a shower I had a dejavu moment.  When my mom was sedated and really critical in the ICU, I told her in one of her semi-conscious moments that if it didn't look like she was going to get better, I would make sure they would stop it all.  The machines would be turned off and the tubes would come out.  In that moment my mom let tears fall down her face knowing she wasn't trapped.  It was the same cousin that stood next to me as I whispered those very sacred words to my mom three months ago.

So last night I hugged my mom again and we both cried our eyes out as I again promised to take her home and let her go.  Whatever she wants.  Intervention by intervention we will decide what will provide quality vs take away from it, and we will do our best to give in.  We haven't given up.  I still pray for a miracle, and for time, and for healing.  But I will also give in to the fact that my mom is really sick.  That while all of us have numbered days, I am keenly aware of how numbered hers are.  So I will be ridiculous and inappropriate in the moment.  I will annoy the shit out of doctors that are set on fixing our problems or running one more test.  I will snuggle with and sleep next to my mom with every opportunity I get. I will watch my mom as she sleeps and study her features, so that I don't forget the laugh lines on her face, or the way she would always scratch my back as a kid with her long nails.  I will pray big prayers, little prayers, and swear filled prayers as my heart continues to break and to heal.  We will continue to give in to the love and support and prayers of people around us.

Unfortunately my face looks a bit more freckled today from all the broken blood vessels that have developed through my ugly cries.  I wanted to be that story of victory.  The story where all the prayers were answered and we could look back with awe at where we had come from.  I am going to trust that God is as present in our story now as He would be in a transplant.  For all we know my mom would have never found a match, or would have died in the ICU after having a transplant.  We can't know the future.  So I will trust that this is our story for a reason.  I will run the gauntlet of emotions as we cycle through this crap storm.  I will love my mom to pieces.  And I will continue to freckle my cheeks and eyelids with the ugly cry.  Because that is what I do when my heart breaks.  I cry and say words that I shouldn't type on the internet, but mostly I cry.

Please continue to pray for miracles, but also for healing in the small moments.  Yesterday I sat and prayed over and over again that the nausea would go away.  My mom probably thought I was sleeping as I lay with my eyes closed next to her, but I wasn't.  I tried to conceal the tears as I prayed for God to take away the nausea.  I will continue to pray more and more for the little things, because in the moment, those are the things that matter.  I will pray that God meets my mom in those moments and that in the months to come she experiences a peace, a love, and a comfort that she never has in the past.

Please pray that we will know how to love my mom and that I will be able to integrate such extreme joy and sadness into my life at the same time.

Thank you again for all the prayers, and love, and support.  Hopefully we will have months to years with my mom, and if not, I pray that the moments that we do have are amazing.


  1. Jaci, my heart is breaking. I'm so sorry about all of this. I will pray for a miracle as I do believe they can happen. I pray that if your Mom only has a short time left, that she gets to see that beautiful Grandchild and that you all find some peace. God bless you all.

  2. Jaci
    I am so sorry. This is so unfair and heartbreaking. Will continue to pray for miracles, peace and understanding. Right now i just dont understand why things turn out the way they do.

  3. "Please pray that we will know how to love my mom and that I will be able to integrate such extreme joy and sadness into my life at the same time." That is a beautiful thought, for pregnancies, hormones, for love, and for life. God bless. Friend of a friend of your blog.

  4. Jaci - Bill and I (as well as our friends who don't even know your mom) continue our prayers for a great lady and her family!
    Lynn Maloney

  5. Barb and Steph put it better than I could. Heartbroken is the right word. We are praying for all of you, for courage, strength, fortitude, wisdom, everything you need.

  6. I don't know how you do it but I must say you're amazing. I know you would probably say you're not doing it and you're barely hanging on but to be able to express your emotions the way you do is incredible. I will continue to pray for your mom and your family. In the meantime, can you share where you are registered at and how we can find it. Maybe registry number or something. I would like to send you something if possible. God Bless you and your family. xoxoxoxoxoxoxo

    1. No worries about stuff for our babe. Honestly your prayers are exactly what we need right now. I'm hoping to create a fundraiser in the next week or two to help us make it until my mom's disability kicks in. I would so appreciate any small contribution to that. Thank you again for reading and praying.