Scared

I was beyond excited to bring my little angel baby home from the hospital, and be able to spend time with her…..but with that being said I was also scared to death.  I was scared to become too attached, I was scared that I wouldn’t know what to do for her, I was scared to allow my mind to think maybe she might actually make it, but most of all I was scared to death of her dying in my arms.

I knew the reality of this was high, obviously the odds of a trisomy baby living are extremely low.  But even though I KNEW the odds, it didn’t make it any easier for me to wrap my brain around.  The fact that my baby would ultimately take her last breath in our house, hopefully with one of us holding her, that we would have to send her off never to see her again, this was just all more than I have ever had to experience.

I found myself reading a lot of blogs about trisomy families and their journeys.  I found some comfort in the fact that I’m not the only one to have to go through this and I decided to write this blog today for that very reason.  To hopefully help out some of those trisomy mommies or soon to be mommies that might have to face these same circumstances.  Death seemed so scary to me, even though I knew exactly where Jules was going once she died.  I have never seen anyone die before, so it was the unknown of what that looked like that was scary to me.

I talked with one of my friends mom who was able to be there for her sister-in-law as she lost her fight to Alzheimers, and I’ll never forget her words she said to me….they brought such comfort.  She said it’s so beautiful to be there as one of God’s children are ushered into his kingdom.  That visual brought such peace.

I must say, Juliet’s road the last few days of her life were not easy.  There were times I was frustrated with the Lord, I thought for all of the prayers that are going up for this little lady, could you please take away the pain? I had allowed myself to think that when the time came, Jules’ would pass away peacefully in her sleep, or just slowly stop breathing.  That was not the case for us.  I don’t say this to make it harder for those of you who may be facing this same journey, but to let you know that through it all we still found God to be so faithful.  Although not all the suffering was completely taken away, the Lord answered our deepest prayers.

From day one Ryan and I prayed that we would not have to make any decisions that would ultimately take Jules’ life.  We did not want to have to ever look back and say, “what if”  or regret a decision we had made.  That’s the hard part about this journey as well.  As your child’s advocate, and having a child deemed “incompatible with life” the doctors leave all of the decisions in your hands.  They will do as little or as much as you desire.  Then there are advocacy groups and parents messaging you telling you not to listen to the doctors, and do everything medically possible to make your child live as long as possible.  We were hit from all sides and the pressure was overwhelming.  So, Ryan and I decided to not join anygroups, and in turn, put our hearts desires at the throne of Jesus.  We prayed for guidance and wisdom in this area.  We prayed for peace in every decision….and he was faithful.

The Lord answered our prayer to spend time with Juliet at home, to get to create memories, and for her brother and sister to get to know her.  He even gave us most of that time with Juliet pain free, equipment free, and medicine free….a huge miracle considering the severity of her cleft and condition.  For awhile we all thought the Lord might allow us to keep her for quite some time.  It was hard to not let your mind go there.  To not think she was going to get to enjoy her first Christmas, and maybe we could see that first smile:)  But that was not in the Lords plan.

As the final days drew near, it was hard for us to watch.  It was hard to see her body fight so hard to stay alive, it was hard to see her come out of those apnea attacks.  We had to keep the oxygen on her 24 hours a day, and since her nose was affected from her cleft, we had to hold the tube of oxygen right by her mouth.  This meant that someone had to be up with her at all times to make sure she always had to oxygen.  We were so grateful for Ry’s mom and my mom that came to help out on the night shifts!  It was at this point when we started debating if we should take away the oxygen.  When you watch your baby in this condition, you find yourself saying to her, It’s okay little lady, you can let go now.  Your perfect body and life with no pain are waiting for you!  We’ll be okay baby girl…please stop fighting.  And she just kept going…

After phone calls to our pastor, a couple of doctors, and a nurse who works in the NICU, we found peace in the decision of taking the oxygen away.  At this point we felt like the oxygen was keeping her going, even though her body wanted to give up…and it was never our intention to keep her suffering longer than she had to.  We were told that if we give her some morphine, allow that to sit in her body for about 30 minutes, and then take the oxygen away, she would have no pain.  Even though we were at peace with the decision, it didn’t make it any easier.  We still did not want to be the ones to make the final call.  And in our darkest hour God met us, and He made that decision for us.  Jules’ had the morphine for about 15 minutes, and as we were snuggling her with the oxygen still on, she had a severe apnea spell….which happened to be her last.  Although it was hard to watch, although I will never forget what it felt like to hold my baby girl as she took her last breath, although I so badly missed her already….God was faithful!  He knew the desires of our heart.  He didn’t make us live with that for the rest of our lives.  And in this we say, GOD IS GOOD!

Daddy got quality snuggle time with Jule’s the morning before she died, when he took his shift.  She held onto his finger letting him know she was going to be okay, or so I like to think:)

Tate had bought this squirrel at a garage sale this past summer, and said he was going to give it to Jules’ if she got to come home.  These pictures were taken when the kids came up to tell Jules’ their final goodbyes….and he brought squirrely squirt as he named him,  just for her.  He thought she’d like that:)

Momma and her girls….or Jules’ and her two mommas:)  Kynlee took such good care of her as well!

This is the last picture we have of Jules.  A half an hour later she got to go meet Jesus….what a lucky girl.

And it was beautiful.  I held my baby girl while her soul got to run to Jesus…and I’m pretty sure he scooped her up in his arms and twirled with her:)  After Jules had died she looked so peaceful.  Her skin was like porcelain ..her face relaxed.  She wasn’t struggling to breath, her body was in no pain.  The sun was shining so bright that day, and as we walked with her downstairs the sunshine caught her eyes and they shone brilliant blue.  We took her down for the kids to see her after, so they could understand that our flesh is just a shell.  We were hoping to provide some closure for them, and so they could understand that our bodies are nothing without a soul. And although they saw her, I don’t think they truly understood because she looked so perfect… but I was thankful for that.

How lucky are we to know without a shadow of a doubt that we WILL see her again, how cool is that!  Now we just need to pray for patience….because man do I miss that little cutie:)

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22 Responses to Scared

  1. Rebecca says:

    Thank you so much for sharing and writing about your sweet baby Jules. Your faith is absolutely inspiring and amazing – you have such a strong family! You have given my husband and me so much hope and inspiration as we are expecting a baby girl who has Trisomy 13.

  2. Amber says:

    Your posts are so beautiful. You word things just perfectly and always move me to tears. I am so blessed by your story. It is so amazing and such a blessing to see your strength. God is good. I continue to pray for you and your family. I am sure it is so hard to miss your little Juliet. She is such a beautiful little girl. Thank you for sharing your story.

  3. Monica says:

    First of all…prayers for you and your lovely family. You named this blog so appropriately! You are the epitome of the Proverbs 31 woman. As a single mom, I sometimes feel like my life is so rough, but after reading your beautiful words, I have so much to be thankful for! I don’t know that I could have walked your walk as gracefully and peacefully as you have, even though I too, am a Christian. Thank you for sharing your story with us! Blessings!

  4. Amy Case says:

    Thank you for sharing this Allie. You are such a brave mama. Praying for you, Ryan, and the kiddos as you continue to make your way through this journey.

  5. Hi Allie, Thank you so much for sharing this incredible journey with Jules’, and being such a beautiful witness for our Lord and Savior, Jesus! You have such a tremendous gift of writing from your heart-I would hope you would seriously consider putting your story in book form as a great remembrance of Juliet!
    Love and prayers continue for all of you. Marcia

  6. Teresa says:

    Your post is so touching. There is such comfort knowing she is without pain in the arms of Jesus. From a mama who knows how hard it is to feel the sadness of not being able to hold on to something we want so bad, know that Jesus will fill the emptiness with his love.

  7. Beks says:

    Your story is so touching. I wish all could feel God’s love and protection like your family does. I pray He continue to bless you all.

  8. Barb says:

    Wow. I am with you. We lost our baby Marcie to trisomy 18 in August 1988. She lived for 6 weeks. We had 10 other kids at home. I remember we’ll those feeling of being afraid to get attached. I remember hearing those words “not compatible to life” and how I wanted to scream at the drs…”you CAN’T know that”. When we brought her home our children were the ones who showed us how to love her while we had her and then to let go when it was over. It looks like your baby was trisomy 13. Marcie did not have the struggles. She laid in our arms for 6 weeks and slept away peacefully in our living room….with all of our kids except for the toddlers present. I can still remember her sweet small breath on my cheek. We have a song in our church songbook about children being HIS precious jewels, bright gems for HIS crown. I thought of this when I read that you call your baby Jules. My mind translated it to jewels. I love that name! We held her so much, my arms ached with the emptiness when she was gone. Thinking of you in the painful days ahead.

  9. Theresa says:

    Juliet was very blessed to have the family she did for her short time on earth. It is wonderful that you have taken the time to share your journey with others – I think you will make a difference to those that may face similar circumstances. You are very gifted in expressing your walk. Thank you and God bless you and your family.

  10. Megan Grundstrom says:

    Once again, I am moved to tears. This is beautiful. Thank you for sharing. I still pray for you and your family and that beautiful angel of yours, Miss Juliet Faith.

  11. Brielle says:

    You are so strong Allie…I just dont have any words, but am very thankful your are a woman who loves the Lord (and my brother!). :) you two are amazing.

  12. Cindy says:

    Oh how beautiful and special. God’s plan is sometimes hard for us to understand, but his love is incredible! Blessings to you all!

  13. Emmie Jo Kasat says:

    I have followed the story of Juliet from the beginning…God Bless Jules and your entire family!

  14. Dianne Shoultz says:

    Ali-so good to see you the other day,like I said I have had a hard time finding words.However,after seeing this,I just want to say that you speak such truth,and it is truly beautiful….thank you for sharing yoour journey,we have all learned alot from it,Gods blessings on you and your family.You are so amazing for a young couple,so very wise and God fearing….

  15. Carrie says:

    So beautiful….so sweet….so very precious! Praying for you all~

  16. Audree says:

    So beautifully written. Thank you for sharing.

  17. Diane Lytle says:

    Beautiful! Thanks for sharing your final moments with your precious daughter.

  18. Kathy says:

    As the tears roll down my cheeks as I read this, I can’t help but think what a beautiful way to meet Jesus! Being held and surrounded by the ones who love me. I know our Lord met you right there that day. There was nothing else Jules would have wanted or needed at that moment.

  19. Emily Allen says:

    This is beautiful sweet Allie. xoxoxo

  20. Syneva Richardson says:

    How wonderful you are to share your moments of Jules with all of us. Praying that each and every day gets some what easier for you and your families. Holding you in my thoughts and prayers!

  21. Valerie says:

    Thank you for sharing your beautifully intimate yet painful story with all of us. Your words and pictures are so telling…showing all the world what it truly means to be “pro-life”. Just this morning at Mass we prayed that all people may come to know and respect life from conception to natural death…Juliet immediately popped into my head…and then to come home this afternoon and read this post. Most be a God-thing!

    Blessings,
    Valerie

  22. Heidi says:

    Your description of Jules last moments on this earth and your picture of her running to Jesus were absolutely beautiful and I believe will prove very comforting for other mommas and families who will walk a similar path. I’ve been thinking about you a lot and still meaning to get a card in the mail to you. Your transparency is breathtaking, humble and God honoring.

  23. Jeanne says:

    I felt everything as you wrote about her last day. As a mom I know that feeling of being so attached to our sweet babies. You were very brave and I know that Jesus was with you each step of the way. I can feel it as you write. Bless you dear sister in the Lord.

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