There is nothing natural in planning for your child’s death.  I have heard this so many times from others who have had to do it, but until you’re faced with it it really doesn’t sink in.  Your the mom, you’re supposed to be able to fix anything.  Kiss their owies, hold them when they fall, give them the meds they need.  But it’s when you can’t fix it that life just doesn’t seem right.

Lately, we’ve had to face some of these tough decisions.  Not because we want to, but because we probably should.  And with doing this I don’t want you to think that we’ve given up on gorgeous little Juliet, or that we don’t believe that God could miraculously heal her, because we know He can.  We just realized that we should be prepared for all situations.  As hard as it is.

This last couple of weeks we have discussed some of the possibilities.  That’s the bugger with Trisomy 18.  Every case is so different.  There is no one to tell you what’s going to happen, how it’s going to be.  I’ve had trisomy moms contact me with their stories of their kids that are 3 and 7 and living good lives, trying to bring hope…but how hopeful can I allow my heart to get?? The doctors can’t answer your questions, people who have gone through the exact same diagnosis can share the pain and same feelings but the outcomes aren’t always the same.  You have to think about all of the possibilities.   What if Jules doesn’t make it to her due date? What if she does?  What if she’s still born? What if she lives?  How long will she live?  and the lists go on.   I’m really not saying this for a pity party, I’m just stating the facts.  It’s a lot to digest.

Through this all Ryan and I have hope.  We have hope that God is using Jules and her valued life even inside the womb.  How ironic that our church sermon this week was focusing on the 6th commandment, Thou shall not murder and the value of life, even life in the womb.  I have not once thought of Jules as a fetus, she’s always been my baby…but how sweet of the Lord to remind me that her life, no matter how long or short, is of value to Him.  That it really doesn’t matter if she doesn’t get to grow old with us, because she was His to start with.  And we grab onto that.  And take hold of that.  Day by day.

Jules loves night time.  She comes alive.  My belly literally has been bouncing at night with her kicks.  Sunday night she wasn’t bouncing.  She wasn’t even kicking.  I told ry she was being quiet but didn’t really alert him to my fears because I myself didn’t want to go there.  I would push on my belly and try to get her to move and I would think I felt her, but it would be so faint.  So different from my fighter.  Needless to say I didn’t sleep good that night.  I woke up and told Ry to keep his phone on him because we might be going in,   and then I raced downstairs to have my coffee in hopes that the caffeine would get her going.  Precious girl finally did kick.  But it was a little too real.  For a while I was finding myself upset with Jesus (my emotions are a constant rollercoaster so sorry if you think I contradict myself, many times I do…so thankful for grace and mercy)  but I was upset because in my mind it wasn’t supposed to end like that.  I needed to meet her, she had a bigger purpose to serve, I was mad I have to be so aware of the kicks inside my belly.  I was just mad.

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD.”

Isaiah 55:8

She is not ours.  God is good.  God is love.  We trust you Jesus.

Jules received some beautiful gifts the last couple of weeks.  I came home to a bag on my table with this gorgeous blanket in from the ladies in my bible study.  The ironic thing was that the kids and I were just looking for a blankie for her that same night.  Kynlee thought the Minnie Mouse one was fitting but it’s not quite what I was looking for:)  And the coincidence really wasn’t ironic at all.  It was Jesus saying, I got this.  I’ll take care of her.  And thank you to the ladies who listen to His voice!:)

And Papa Tom and Grandma Sue wanted to get her a special outfit as well.  It’s the most gorgeous thing I’ve seen, and probably the most expensive piece of clothing my kids own:)  But perfect for Jules!

She will look beautiful in it:)

and a cute little hat that we may need to cut in half to fit her:)  The perfect saying.

We are blessed.  Blessed by your prayers, blessed by Jules, and blessed by God.



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12 thoughts on “Planning…”

  1. Hello Allie,

    Congratulations on the month you’ve had with your sweet baby. I did respond to your comment on my blog, I’m not sure if you saw my email. Anyways, I just want you to know that if you do need to talk thru all your experiencing, you can contact me anytime. But no pressure, only if and when you need it. Your minutes are so precious right now. I know the uncertainty is brutal, but I think, when it comes, you’ll be grateful you didn’t know how it would end–that knowledge would make the experience even more torturous.

    Here’s my email ( I’ll send you phone numbers if you need them. (Don’t want to leave them here.)

    Your baby is so beautiful.

    Love, Ali

  2. Praying for you all. I can’t even begin to imagine what you are all going through. You have amazing faith and beautiful children (all three). I will be praying for a miracle, but also that your hearts will truly reflect God’s.

  3. Julie Mehlberg

    Continued prayers to you and your family. I totally understand your mixed feelings during this difficult time of planning. When we were doing our planning for our trisomy 18 angel Nicholas is was so hard. A parent should NOT have to bury their newborn child. We did not have alot of time because between the time we found out and the time I was induced with him due to my medical condition at the time was only approx 3 weeks. So yes every situation is very different but yet the same. I think of you very often and pray that god contiues to wrap his arms around you.

  4. Dearest Allie, Already the refining fires of affliction are bringing forth your faith in God as pure as much refined gold. Love you! Lori

  5. I have recently started following your blog, your story reaches to my soul! I will pray that you have strength and wisdom during this time, and that God would continue to use you to bring him glory!

    Be strong sista,


  6. Continuing to pray for you, your family, baby Jules…

    May you continue finding comfort within the hands of the Lord…
    May you continue growing your faith in Him…
    May He grant you peace along the way of this journey…

    With love and prayers,
    Ryan & Shanna Scheithauer
    Our T18 Angel:
    password: angelboy

  7. Allie, I have just sat here and cried while reading this ! My heart hurts for u and your family.



  8. Stephanie Hilleman

    Allison, my family and I continue to pray for you, your family and most of all little Jules. I loved your statement that she is God’s to begin with. Very true but I do know something wonderful will come of this really hard trial. Thank you again for sharing. I was able to share this with my five year old who prays for your sweet baby at bedtime prayers. Wonderful to hear and see little children of God praying for a precious baby…even one she has not met. God bless.

  9. Marcia Peterson

    Allie, You are so right…a parent should not have to plan for the death of their child. We had know idea our third child belonged to God only; until the day he was still-born, full term. God absolutely does give His much needed grace at the perfect time as we found ourselves comforting OTHERS at the time of our great loss! Praise His Holy name for such a sweet memory and a wonderful thing to look forward to when we get to heaven to meet our little one that has been with Jesus since 1975.
    Love to you and family and prayers as you wait out God’s mystery in HIS care.

  10. Ryan , Allie and family
    Sending huge hugs and prayers to you all, I wish I could bring you a miracle.
    How special that Jules kicks at night , she is letting you know she is with you
    and she knows the love you feel for her. Take Care
    Gail Nelson and Family

  11. Dyann Schurman

    We continue to pray for all of you. I can’t imagine how hard this is and yet God is good. Her life will never be for nothing. What we all hold onto in times like this is in eternity we will be able to get to know her forever. I have a baby sister who I have never met who lived only 2 days. Can’t wait to meet her and my mom is already enjoying her company. Only in Christ can we say this. Blessings on your family.

  12. Continued prayers to you and your family. Nothing will take away the pain you face, it’s real. Only time and the Lord’s strong arms to hold you and your family close.

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