Compatible with life

I wanted to spend some time giving a quick update on how life seems to be settling in with our recent prognosis for Simon.  Life often feels like chapters, and this current reality has been no different.  There is life before knowing of Simon's illness and life after knowing of Simon's illness.  It is comforting to write that I wouldn't want to go back to the pre-Trisomy 13 Amy.  While she may have had more bounce in her step and less tears filling her eyes daily, she was a woman close to The Lord, but not nearly as close or faithful as she is now.  How else could we get through this without our Heavenly Father?  When my eyes start to blur and move away from Him, He nudges me and reminds me to lift my eyes to Him and allow Him to carry this for me.  Praise God because the weight of this is too far too heavy to shoulder alone.  I have been praying for God to use Simon in a mighty way to change other's lives.  It hit me, gently, while sitting in our old church in San Francisco, that all along, our great Savior was using Simon to change me.  Oh, I am grateful to this life inside me that has forever changed me.  My sweet Simon has already taught me a lifetime of lessons and love.  Whenever I reflect on the period when my relationship with Christ changed, I will always think of my sweet son who helped draw me more near to Jesus.  I can't wait to spend time with Simon, whether that is in the flesh or in heaven, thanking him for how he changed my life.

Each day I try to find new blessings, even when I'd rather continue to feel sad about feeling sad.  One of our larger blessings was revealed to us when the full chromosome results were returned.  This was about two weeks ago.  Our genetic counselor left a voicemail that said Simon does have the regular Trisomy 13 and not the inherited or high risk type of Tri 13.  While this doesn't mean anything for Simon's life, it does mean that should The Lord bless us with future pregnancies and babies our risk returns to the normal 1% chance of reoccurrence for Trisomy 13.

I sense our coming week will be heavy for us.  I am just recovering from the stomach flu, so I had a lot of time to wallow and think about what is to come.  It's a week filled with meetings and maybe a few decisions as well.  Or maybe just a week of thinking about things to consider.  First, we meet with my regular OB, who will answer some outstanding questions we have about labor and delivery and potential NICU stays.  On a happier note, we plan to video when we listen to Simon's heartbeat so we forever have this recorded. Second, we will meet with an amazing organization called Alexandra's House here in KC that specializes in counseling for families with babies who have fatal diagnosis.  They also provide hospice to infants needing this sort of care following delivery.  I have already spoken with two counselors from Alexandra's house, one is actually a previous prayer partner of my mother-in-law (no coincidence there…God is always covering us).  I already feel like Alexandra's house is a place that will offer comfort to our souls.  They will be able to help us discuss what we want the time period after Simon's birth to look like – from who is in the room with us, to photography of Simon, and to his final resting place.  Finally, we meet with our pastor to discuss Simon's celebration of life/memorial.  Adam and I have a few ideas about how we would like to celebrate.  It will be nice to hear our pastor's ideas, as he graciously mentioned he has been thinking about the service as well.

As I write out things like, “final resting place and memorial,” I can't help but admit confusion.  How can this be when Simon is actively kicking me as I type?!  He shows so much life inside of me!  But yet we have been told it will end all too quickly prior to, or soon after birth.  “Incompatible with life” is what I read over and over again when doing my research on T13.  While Simon's life may be incompatible with life outside of my womb, he is, without a doubt, very much living and very compatible with life at the moment.  Simon has already given more life to others through Christ in his short time on earth than I could ever fathom.

As I close, I would like to thank each of you for your continued prayers.  We are being lifted up in prayer in many, many time zones - it really feels like prayer around the clock to me.  Adam, Teddy and I are forever grateful for the house visits, phone calls, emails, cards, messages, voicemails, texts, facebook messages, meals, flowers, gifts, and above all prayers and love.  We do not feel alone in the journey.  Thank you.
In His Name,


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