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Stolen Joy

9/26/2018

5 Comments

 
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 For the past 9 months, I have felt without hope.  I have had more days than I want to admit where I hung onto my faith by a single thread.  I have a childhood friend who has been battling cancer for two years and we often talk about how easy it is to get discouraged when you are faced with sadness Every. Single. Day.  It's so hard to stay strong, positive and faithful when you feel absolutely without hope.  However, it is important to recognize the distinction in feeling without hope and actually being without hope.  When we trust in God, we are never without hope (even when it feels that way). 

Two weeks ago my husband and I brought home a newborn son after what can only be described as a tough pregnancy.  In fact, tough doesn't even begin to describe it.  From our first OB appointment, fetal development was abnormal.  The first trimester was filled with frequent ultrasounds followed by bad news, week after week.  They would see something "abnormal" and then it would seem to improve the next week, only to uncover a new concern.  At 13 weeks, we finally thought we had some good news when the high risk OB told us, "I know the first trimester has been rough but I think things are going to be much better from this point on.  Based on your genetic screening, you are in the lowest category for risk of a genetic issue.  You have like a 1 in 10,000 chance of an unhealthy pregnancy."  Around our third trimester, we would learn our son had a genetic abnormality that occurred 1 in 50,000 live births (not 1 in 10,000).  A genetic issue so rare, they don't actually screen for it.  A genetic issue associated with several abnormalities, many considered life-limiting.  I have never cried so hard and felt such heartbreak as the day we received this news and had to make difficult decisions on how to proceed.  Just thinking back to this day is incredibly painful - it is the worst pain I have ever experienced and by far the worst day of my life.  

From that point on, the message from the 4 different OBs who managed our care was consistent; we should prepare for a stillborn.  My heart was broken and my husband and I faced many difficult decisions.  Pregnancy is supposed to be a happy time in life - when you are overwhelmed by joy and hope for what is to come.  It is supposed to be filled with baby announcements, gender reveals, baby showers, setting up a nursery and getting giddy over the cutest baby clothes on planet earth.  No one talks about how to deal with a pregnancy that doesn't go that way.  Or how to deal with the many people who congratulate you, when you start showing and want to know the baby's name, due date, etc.  Do you fake excitement and hope you can resist tears long enough to get through the interaction?  Do you tell the truth and be a total kill joy?  How do you answer the inquiry when you tell someone you are going to delivery next week and yet you barely look 6 months pregnant?  It's a very sensitive situation to navigate, especially while simultaneously coping with your own grief.  It's just tough.  And painful.  And you feel hopeless.  What do you hope for when your child surviving means a life of potential pain and suffering?  Do you hope for a stillborn?  Do you pray for that?  Do you pray for a miracle even when your faith feels like it is held together by a single thread?

Thankfully that thread, and a lot of encouragement from friends and family who have suffered in similar ways, helped me find joy in the darkest of places.  I submerged myself in Scripture and prayer - often asking Jesus to spare our son's suffering and somehow use the situation for His Glory.  I asked for perspective that would bring me joy.  I learned to be thankful for the journey and not focus on the outcome.  God helped me find joy in little moments.  For example, the first time I felt him move - I realized there are tons of mommas who struggle with infertility or their pregnancies never reach the point where they feel their babies move.  So in a way, I thanked God for that experience and I soaked up every single time I felt him moved.  I learned to be thankful because so many women never experience what it feels like to feel their baby move.  Some mornings I would spend an extra 30 minutes in bed just being still and feeling him move and thanking God for that moment.  God taught me (and is teaching me) to live in the moment - not focused on the future!  I quickly realized that if I allowed him, Satan would steal every ounce of joy out of the miracle of life I was  experiencing.  He is a master thief.

John 10:10
The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the fullest.

I still have to remind remind myself daily not to let Satan steal my joy...because he does.  Satan will steal every ounce of joy you have in life, if you let him.  Resisting the steal is the challenge.  Remembering God will give you a full life (full of joy, full of grace, full of love) even when circumstances are horrible is really tough.  But it isn't impossible.  All you need is faith.  

I believe our son's birth to be a miracle - the look of shock on the doctors' faces was proof enough for me.  Our son has many obstacles to overcome based on his medical diagnoses.  And honestly, if I spend time thinking about each and every diagnosis, I quickly feel my hope fading.  But we were told he wouldn't survive birth and he did!  So we are taking it one day at a time and considering each day a blessing.  We are choosing to have joy despite Satan's every attempt to steal it.  I choose faith every single day....and although it may take effort, the joy is worth the effort.  I know there will be days when my faith may wither to a thread but thankfully a thread of faith is all God needs to get us through tough times.  So find your thread and hang on.  

A thread, hope and blessings,

Ashley Lucille
5 Comments
Samantha Johansen
10/2/2018 09:41:32 am

My gosh YES!!!! Amen. Every good and perfect gift is from above. Thank you Lord for Ashley, Casper and JT - he truly is a miracle! xoxo

Reply
Wendy
10/2/2018 11:34:53 am

Ashley, I admire your desire and ability to find the silver lining when you were told nothing but dark clouds were ahead. JT is such a cute little peanut and is so lucky to be yours. Yes, your family will experience bumps in the road as you travel on this journey. Many parents who travel on the road of parenting a child with special needs, including myself, have found that the bumps and detours you encounter along the way just make the journey more interesting and beautiful. I have learned to truly appreciate the “little things”, as well as to be flexible, patient, and to love unconditionally. I pray that the journey for your new family is a smooth as possible. I am always here if you need me. Sending love, hugs, and squishy baby kisses!

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Alicia
10/2/2018 11:57:24 am

Ashley,
Beautifully written. I admire your strength and commitment to God. I have always known you were here on earth to do great things. You are a special person that I admire so much. Everybody’s faith is different,but the same, and THANK YOU for sharing your story. Things happen for a reason and your son was put here on earth with you for a reason, for your strength and resilience. We see miracles everyday and I pray and will continue to pray for you and for JT to beat the odds. I pray that you, your son, and your husband experience all the joys of a new family full of health, strength, and love.

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Sabrina Seidman
10/3/2018 06:24:27 pm

Ashely, thanks for sharing. My heart has been hurting for you ever since Sam shared this with me. I'm so sorry for the pain you experienced and still have when peaking into the future. I pray God will continue to cover you with his presence and bless you and your family with many more miracles each day. The simple fact that JT is alive is such a powerful testimony to our God who loves to defy the odds and break all standards. Your story and your faith are powerful. Praying you have more opportunities to share both. Love, Sabrina

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10/18/2022 07:37:18 am

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    Ashley Lucille

    Just a few reflections about everything God is teaching me in this life...a journey deeper into His purpose for my life.

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