Friday, June 15, 2012

June 15th, 2012

I had my last appointment with my Olympia OB today.  I've been so thankful to have him along on this journey.  God led me to the right medical partners.  It helps so much to be able to talk to someone about both the medical as well as the spiritual side of Abby's life.  Dr. Bell took a moment to pray with/for me at the end of my appointment, his words of prayer were so comforting.

We talked about my personal conflict regarding heart surgery.  Trever and I have not pursued any major medical  procedures/surgeries for Abby.

I've been in situations where I've had to defend that decision.  And I've been in plenty of situations where I feel like I should defend myself, but I haven't had to due to the forum.  Each of those situations can weigh heavy on my heart.  But the hardest moments are when I doubt myself, doubt my love for my child.

What does it mean to love your child?  What would you do to save your child?  What does it mean to protect your child?  And how do I define quality of life for my baby?  Until Abby came into my life I think the answers to those questions were so clear.  She has challenged me to really evaluate what defines a life.

Every once in a while I have to revisit the decisions we've made.  I have to comfort and reassure myself that it's okay for us to make these decisions.  We're giving Abby a chance at a beautiful life, one filled with as much love as possible.  One filled with comfort, touch, prayers, joy and more love... and maybe some extra love on the side.  We're giving her a life without lots of trips to the hospital.  It's going to be so hard, probably so much harder than I can imagine, those moments when she is in distress and we choose to just hold her and love her.  When our parenting instincts tell us to call 911, to rush her to the ER.  I already feel my heart aching in anticipation.

When my almost 80 year old grandma was given a diagnosis of emphysema, congestive heart failure, and lung cancer that had metastasized to her liver I thought it was crazy that they offered her chemo.  She had lived nearly 80 years, she was already not recovering from a bought with pneumonia, how was chemo going to help her?  Yes, it may have given her a few more years.  But at what cost?  She would have lost so much time/health in the process.  It's like we are so scared of death that we feel the need to fight it at all ages.  Death isn't horrible for the person who goes to heaven, death is painful for those left behind.  And death is inevitable, even more so when you are almost 80.  I was glad she made the choice to embrace the days she had left and then let her body finish the job.  I was also so grateful that my grandma was surrounded by friends and family literally every day from the moment of the diagnosis.

That's what I want for our little Abby. To have her surrounded by the love of this world before she is surrounded by the love of Heaven.  To celebrate her each day that she is in my belly and in my arms, and then celebrate with her when she is born into her new life.

I'm not saying it's going to be joyful and easy (I'm truly not that delusional).  And I'm not saying that if one of my other loved ones gets terrible news that I'm going to encourage them to just ride it out and enjoy their numbered days.  No way, I'm going to say "fight your ass off, do what you can, embrace this life and live it to the fullest!"  I just think these other two situations fell into my heart in a different way.

The last conflict that I feel surrounding our decisions with Abby is the message that it sends for the Trisomy community.   These babies are already discarded by most of the medical community and by extension the families who are faced with the decision of what to do with a Trisomy diagnosis.  I know we already fall into a very small group that has chosen to give our baby life regardless of the diagnosis, but I don't want our decision to avoid major medical interventions to keep other families from having a chance.  The discussion regarding what medical choices you should have, and who should pay for it are not reasonable topics for my story.

I just hope we can find a way to advocate for better medical transparency regarding Trisomy babies.  That families can be given a more thorough picture of what this might mean for them, and counseling to help them make the decision that is best for them and for their baby.  That "incompatible with life" does not mean you *have to* terminate your pregnancy.  Have I ever mentioned that you can end your pregnancy at 20 weeks (in this situation) more quickly than you can get a gun?

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