Finding Out

Devastation…  Guilt…  Confusion…  Sadness…  Rage…  Nothing…

Research…  Medical appointments… 

Hoping for a miscarriage…  Hoping NOT to miscarry…  Aching to hold Little One in your arms…  Hoping for a miracle…

Dealing with others…  Having people ask you if you will abort the baby…  Looking into other’s pity-filled…  Seeing compassion where you least expected it…  Having people surround you when you really want to be left alone…  Having people give you your space when all you really want is a hug…

 

Oh, my new dear friend, I am so sorry that you are embarking on this journey that you never desired.  But, I can honestly say, if you allow yourself, you will be able to find the nuggets of love, wisdom, and joy that await you throughout the journey with your precious baby.

 

God tells us to take every thought captive.  Now, in these early days, I beg you to practice that.  Maybe you can’t pray or read His Word right.  That’s ok.  Maybe all you want to do is study His Word to find out His reason for this madness.  Do it.  God is there, and He is big enough to take your hurt, your anger, and your fear.

I pray that this website can help you make sense of all of this.  Remember that Baby’s diagnosis is NOT a prognosis.  No doctor can tell you exactly what will happen, but they can give you an idea of how to prepare.

First, however, you have to tend to you and your heart.  Others will want to help.  Some will be helpful; some won’t.  Don’t push everyone away in your hurt and anger, but do be honest with them if you need some space.  It’s perfectly normal to go from one extreme to the next.  Cry if you need to.  Scream if you need to.  Sit still and silent if you need to.  Go window shopping if that helps you.  Go for a hike.  Read a book.  Don’t get caught up in “doing the right thing.”  What is the right thing right now anyway?

My Web Journal entries for the first three weeks after diagnosis:

December 8, 2010—fb post
How to say this… the ultrasound revealed that Baby has a bilateral cleft palate, heart and brain defects, and an
extra digit on each hand. The combo doesn’t look good, but we get more results on Friday. *sigh* Please pray.

December 10, 2010—fb post
Test results show full trisomy 13, which has a bad prognosis. Baby is a boy–Jedidiah, Beloved of God.

December 8-18, 2010
The Beginning

“What is the best case scenario and what is the worst case scenario?” I asked.

“Best case is a cleft palate and we simply aren’t seeing the heart well enough.  Worst case is trisomy 13 which is incompatible with life.”

I was numb.  I was sad.  I grieved and said goodbye.  Until three days later.

Then, I got mad, really mad.  I have spent the last 7 days mad at just about everyone around me, including God.

Today, day 10 of knowing that I will say goodbye too soon to one of my precious blessings, I feel that a burden has been lifted.  The Lord must be hearing others’ prayers because I have hardly prayed, except for when it came out as a second nature/habit sort of thing, and then I would just stop.

A close friend just listened as the floodgates opened, and my sister allowed me to communicate my heart—my jumbled, confused, hurting heart.  Then, my husband—ever-solid and ever-loving—provided his support to my need to research, question, and explore the possibilities.  Do I want aggressive, active care? I don’t know; give me more information.  Do I want to end things early? Not an option in my heart and mind.  Do I consider a home birth and quiet, private death for our baby?  Do not tell me that all options have been explored in 10 days when we live in the 21st century and have so much medical technology and innovations to explore.  Most likely, will my son die within hours of his birth if he makes it till then?  Yes.  Do I want the chance for his life and our suffering to matter for medical advances to be made?  Possibly.

Am I willing to risk my own life and leave my four healthy, growing, changing children behind? Yes and No.

December 12, 2010—fb post
Today is another day that I get to have Jedidiah growing inside me. I praise the Lord for each moment, each tiny
movement, each chance to whisper his name.

December 16, 2010—fb post
upstairs toilet overflowed this morning. my boys were awesome helpers! since jim’s at work, we got uncle scottie
to help move the downstairs furniture. i had a bit of a meltdown. thankfully, my boys just let me cry and understood i wasnt upset with them.

December 20, 2010
Jedidiah is moving so much more.  It is wonderful to feel him inside me.  Yesterday at church “God’s Girls” prayed for us.  It felt so good to share with Anita that I have a goal… to ask as many questions as possible, making sure that the medical community understands that no matter how short his life, Jedidiah matters, even if healthcare funds would be better allotted if I had just aborted (how do I hate that slideshow!).  I have to point out that our medical team has never even suggested that we should have had the screening in order to end the pregnancy; however, much of the “research” and many testimonials that I found show that our experience was not the norm.

Looking into fetal surgery centers around the country, I realize that Vanderbilt has lots of experience, although Boston has done more work on the heart.  I do not yet know the risk to my life, and I will not knowingly leave the boys motherless, but I must try to see what can be done.  There are many more full trisomy 13 babies out there living than I realized.  These babies used to live a month (47% in the 80s), but that has dropped significantly (down to 17% in the 90s) as the medical community has written them off as gonna-die-anyways.  I realize that in some cases it is that the pain and medical interventions seem more cruel than necessary, but I am distressed to think about the lack of energy and research that seems to go into a middle ground possibility for these babies.

From http://trisomy13-patausyndrome.blogspot.com/2010/01/4-things-youd-like-to-tell-your.html:   “One thing another parent told me which I found particularly insightful was T13 is a diagnosis not a prognosis.  I think it would be helpful if more doctors understood and acknowledged this.  Just as a simple diagnosis of cancer does not give you any idea of your prognosis without looking at the specific details and symptoms you are personally facing.  Neither does the broad description of T13 without looking at the individual symptoms.  Even when looking at the symptoms, the doctors are not God and they are not omnipotent. Thankfully most of the doctors we have encountered readily admit this.”

“Another thing I might tell an unsupportive doctor is that while I certainly appreciate statistics and they do have their place, children are not statistics and should not be treated as such.”

December 23, 2010—fb post
Yesterday, the peds cardiologist confirmed last week’s echo results and shared that even under the best of
circumstances (ie no trisomy 13) that he would not do an operation until around 4 months, at the earliest. He did say that a cesarean would not be any easier on Jedidiah’s heart, so we do not have to go through such a major event. Lots of tears today, but your msgs, thoughts, and prayers have helped so much!

December 24, 2010
Born to Die
The Bible explains to us how EVERYONE has a purpose on this earth.  God created even the wicked for their day.  Jedidiah was conceived; he was molded and shaped with his seemingly imperfect body; he was born to die.
In the case of Christ, I understand. But, in Jedidiah’s case, I don’t.  I was overwhelmed at the church’s Christmas Eve service when I heard the expression, and it opened the floodgates in my heart and mind.  Indeed, if God is in control, then Jedidiah, too, is born to die–an early and uneasy death.  Why?  Why would the God of the universe need to create a seemingly imperfect child in order to bring Himself glory?  Why?  Why would He need to use our family’s pain to reveal Himself?  Maybe I think too much of myself that I believe that God would use me—in my selfish, adulteress, idol ways—to bring Him glory.    But, believe it I do.

Yet, still, my mother’s heart cries out… why must Jedidiah be born to die?

Odd sort of poem: “It cannot last.”
It cannot last. That which we do not treasure.
That which we do.
It cannot last. That to which we hold on tightly.
That to which we loose.
It cannot last. That which we do not understand.
That which we know.
It cannot last. That to which we try to escape.

That which we run to.
It cannot last. That which we gain.
That which we lose.
It cannot last.

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