Wednesday, September 23, 2015

Vivienne's Journey

 About 2 weeks before Vivienne was released from the NICU,  I was watching a video that a friend had posted on Facebook.  It was a video of a family I had gone to school with and I knew the two older boys.

After watching it I thought it was cool that someone had found their story and made this video, but didn't think much about it until 2 days later when the Doctors told us about Vivienne's new trial and what it meant for our future.

I'm finally in a place where I can share what I wrote.

DAY 79

The last few days have been hard.  I've been so off lately.  I just want to be done. To be done worrying.  Be done getting bad news. Be done waiting.  To be whole and home.  I feel like we have been living moment to moment for so long.  It's been a long two years, and I really want a happy nice little "wrap up" to our struggles, but that seems to not be the plan.

Yesterday we were told that Vivienne has Auditory Neuropathy Spectrum Disorder (ANSD).  In a nutshell, her hearing is somewhat like an FM radio. . .coming in and out.  In essence, she doesn't hear right... or at all.   I'm so very tired and this news has been harder for me then I can even express.

 I've felt so alone, disconnected and exhausted through it all.  I have moments of hope and light at the end of the tunnel and then my tunnel collapses and I'm left digging my way out again.  I'm trying to have faith and hope, but feel like I'm constantly falling short of the strength I so desperately need.  Jake seems to be managing this a bit better.  He has a brighter hope and resolution of the future...I just feel deflated.  I'm tired. I want peace.  It hasn't come yet.  And maybe it's because of my lack of faith.  My lack of hope.  Maybe it's just another trial to overcome.  But I need peace now...whether I deserve it or not, I need good news. I know it sounds bad. And I wish I didn't feel it....but I do. But, right now, I'll just try to do this.  I'll try not to fall apart.  I'll try not to get angry.  I'll try not to feel as if I deserve anything.  I'll try to have hope that she will be in the small percentage of infants who seem to "outgrow" this disorder. We seem to be really good at landing in the group of small percentages.  I'll try to get sleep at night.  I'll try to smile and be ok. I'll try to be happy about the small successes.  I'll try not to worry about what else could possibly be coming our way.  I'll try to move forward.  I'll try to lean on others....since I am so very tired. 

I hesitate in publishing this...because it is me.  It's all of me.  It's my fears, frustrations and lack of understanding....for everyone to see.  But, this is for me.  For me to hopefully look back and see more clearly Gods hand in my life.  I am too close to see clearly now.  Even though I KNOW God has not left me to do this alone.  Not even for a second.  But, sometimes...I'm just too close to see.  So, for now, I'm trying to try....until I can see.

After the ENT Doctor finished giving me the results of her tests, I held Vivi and sobbed.  Why? How?   I had a lot of emotions flood my mind.  I was alone that day.  Jake was at work.  I yelled and sobbed at Heavenly Father to fix this as a drove down the main road away from the hospital.  I told Him I had done enough and He needed to fix this.  That I deserved this miracle. (Something I have apologized to Him for multiple times since.) As I came up over the hill to enter onto the freeway, tears running down my face, I was reminded of the Featherstone family.  I thought of the boys.  All they had accomplished.  I thought of the relationship between all of the brothers.   I thought of their Mom.  How did she do it?  I almost drove straight to their house.   But, instead I drove home in a heartbroken mess.  That night I showed my husband the video.  We both cried.  We cried because we knew Vivienne can still do ANYTHING she wants.  And we cried at the new challenges we thought this would bring.  The possible isolation and loneliness.  We told our families and I pretended to move forward.

The first month home was really hard.   Doctor appointments, hospital visits, shots, more tests. .. all this while telling others how relieved we were that it was "over", and knowing we had really just begun.  One day, maybe I will feel like it is important to share all we experienced that first month home, but for now, it was hard and I'm grateful its behind us.

 Just like with any obstacle or trial, it gets easier with time.  And time has passed and we've been able to see many 'hidden' blessings that we missed when we were too close to the heartache.   Once a week we have someone coming in and teaching us sign.  We LOVE signing together.  I can sign to Jillian that its time to go home from across the park, and right now she comes because I signed it to her.  It's like our family's secret language and we love it!  We've learned that we need to improve how we communicate.  We need to be better at making eye contact, not talking over each other and listening until a person is FINISHED talking.  We were very lazy communicators and its been a good thing for us to learn to improve in this area.   We've learned patience and a new way of dealing with hard things.  And I am so grateful that Heavenly Father has let me see this.

Because I'm not as close now. . . .I can see more.  I can see a glimpse of how amazing Heavenly Father has been to me.

I have recognized so many tender mercies that have helped me get through this crazy NICU journey and now Vivienne's new journey.  We still have hard days.  I don't think that will change.  I am grateful I know that hard days will come and that that is ok.  I'm grateful for Vivienne and her squeals, her babbling, her hand babbling, her incredible smiles, for the days her hearing is better and she responds to our voices and for the chance that I have to be a mom to such amazing girls.   I'm grateful for so many people wanting to support us by learning sign language and for the love that we are constantly being shown by friends, family, acquaintances and complete strangers.  I am so very grateful that I didn't give up on Heavenly Father.  That I was blessed to hold on long enough to see His hands in my life.  He is ALWAYS there.  We just need to pay attention.  I'm grateful for that and hope that I can pay attention when the next challenge comes our way!


  1. Thank you for taking the time to share a bit of your heart. It's never easy, but you will be forever grateful for it as will your girls. I look back on my journals over the past 4 years and some pages/paragraphs I want to cross out but that's who I was at the time. It took me until this 2nd tumor to really understand why I am going through my trial. Yours is obviously much different than mine. I'm so happy we ran into each other at Costco last month. It had been too long. You are loved by many - most importantly by our Heavenly Father. I will keep you and your family in my prayers. Take care my friend.

  2. Thank you for your amazing testimony of faith. You are a wonderful strong mother and I feel so blessed to gain strength through your testimony. It is funny I have really felt impressed to be teaching my kids sign and just have not found out a good way to do it. I would love any suggestions you have of ways that we can learn. You truly are amazing! Much love and prayers always, Breanne