Thursday, July 28, 2016

Maya Journey: Hope is Never Lost

Maya Journey:  Hope is Never Lost

Spoiler alert: lots of misspelled medical terms and grammatical errors a head :)

***I wrote this entry a couple months ago and never published because I had planned to include both the dark days of this pregnancy and how things turned around once we switched doctors but I ended up just writing about the hard part first, so more to come about how we were later surrounded by the best medical professionals in the universe and the many miracles that followed.****

We went to our 20+ week ultrasound where we learned Maya had some red flags for chromosomal issues including a heart defect.  The genetic counselor explained the possibilities and some of the genetic testing available including the associated risks.  Never even considering in past pregnancies the offers to do prenatal testing, this didn't feel too different because we knew that we would not terminate a pregnancy.  At length we explained this to the counselor and the doctor explained that he understood but to keep in mind that with the red flags present we may want to prepare ourselves. That reason made more sense and we did move forward with an Amnio.

We learned of Maya's diagnosis the Tuesday before Easter.  The same genetic counselor we spoke with prior to the testing, gave us the news, and then asked if we were still going to continue the pregnancy.  When she asked us that question even after our lengthy discussion about our feelings against terminating a felt kind of like an "are ya suuuure?" and that are baby wasn't worth it in the eyes of medical land.  (I like to live in magical fantasy land, and so medical land really didn't seem that fun at this point).


Thankfully we were invited to go on a vacation with the Woodruffs and we had an absolute blast.  We were nestled in a cabin in the mountains with a big pile of nature, cuzzies, and Easter candy...exactly what we needed.

We went to church that Easter and heard a talk about how not all miracles look the same.  (Brilliant, and inspired obviously).  The speaker said (in essence), sometimes all you have to do is take a step into the water (Moses parting the Red Sea) and God will blaze a path, but sometimes God sends a fish to swallow you whole (Jonah).  Most of the examples were of those asked to accomplish something of God and lead down a very difficult path to do so.

Certainly, that Easter Sunday we felt the hope of the resurrection more intensely and connected deeply with our gratitude for the savior...and also perhaps the realization that a giant fish had eaten us.

Shortly after we returned from our Easter vacation it was time for another doctor visit, the first one Maya and I would attend wearing our new label "Trisomy 18" (echo echo echo).  Naturally this was a terrible introduction to our new world.  The doctor actually said "There is NO HOPE" and asked why I would still deliver at the fancy hospital with the NICU when they would not be doing anything for me anymore.  The doctor (and this was one I had liked and respected) went on to tell me how she could prescribe me depression meds because losing a baby will be hard and normally they don't do that because it could cause birth defects but I "don't have to worry about that now." She continued to describe changes in the birthing process and that the focus would no longer be on the baby but on the care of the mother.  I felt terrible walking out of that appointment.  I had nothing to compare to, we had never been through this before, it felt like my baby didn't exist anymore, and that I was transported to a hospital in the 1900s (pictured above).  This is where some of those dark days began.

There is a talk by Jeffery R. Holland called Like A Broken Vessel that is especially poignant for us right now, it's actually meant to be mainly about Depression, and of course there have been some pretty dark days where I have felt like depression was a tar pit and I was stuck in it, only to be rescued by a wooden sign that read "Your baby is going to die" and on the other side "But hey that's ok she will be an angel so you should be happy" beating me on the head pushing me deeper into the tar.  Pleasant right? I Know.  Although I have had a good number of days like that, and may have similar ones in my future, it is hard work but I feel like I am on more solid ground.

"God's love is there for you whether or not you deserve it.  It is simply always there.  Never, ever, doubt that, and never harden your heart. Faithfully pursue the time-tested devotional practices that bring the Spirit of the Lord into your life.  Seek the counsel of those who hold the keys for your spiritual well-being.  Ask for and cherish priesthood blessings, take the sacrament every week, and hold fast to the perfecting promises of the Atonement of Jesus Christ.  Believe in miracles.  I have seen so many. They came when every indication would say that hope was lost.  Hope is never lost.  If those miracles do not come soon or fully or seemingly at all, remember the Savior's own anguished example: If the bitter cup does not pass, drink it and be strong, trusting in happier days ahead." (Jeffery R. Holland)

Until next time...


  1. Oh-me-oh-my! I can't believe that they talked to you like that! It makes my blood boil! All through our stuff with Jeremy there was always concern for him as well as me. There were points when the specialists were rather direct in recommending that we let him go, and still at appointments I have to confirm that he's full code (meaning that they will resuscitate him if something happens), but they never talked about him as if he was already gone. Wow, on the depression med push as well! I never received anything like that. It's crazy how our experiences can be so similar and yet so different.

    I remember so vividly sitting in sacrament one time not long after Jeremy had been born--when we still weren't sure if he was going to make it through the week. We sang "Be Still My Soul" and halfway through the first verse I was bawling--tears just cascading down my cheeks. That hymn had never really had much meaning to me before, but it was just what I needed at that moment. The Spirit was so strong.

    I can personally attest to how lonely, how hard, and how amazingly devastating it is to have a special needs child, but I can also tell you that there is hope, and joy, and love--so much love--not just from your little angel, but from strangers and family and friends. I've been in that tar pit. Your whole life has changed and it will never be the same, but I can tell you that you will find a new normal and that things will get better.

    Your family is in our prayers.

    --Bambie and Josh

  2. Bambie,
    This journey we are on with Maya has definitely supplied bumps and bruises, and you are right, things have gotten a zillion times better than that first introduction to what we then called TRISOMY 18 (epic) and what we now KNOW as our sweet baby Maya.
    I have been pondering a lot about what helps when someone is going through a difficult time, and lately I have cause to believe that kind words, inspired words, encouraging words, have really lent me strength and comfort, thank you for sharing yours.
    Much love.

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