The next few days after receiving Libby’s diagnosis, I had feelings I wish I could take back.  I am now disappointed in myself.  I was flat out angry at the world.  At the time it didn’t feel even like I had God on my side.  I was extremely angry with Libby’s birth mother. I kept thinking if she would have done an ultrasound this would have been detected.  If she would have taken prenatals and gone to the doctor this could have been prevented.   Oh the list goes on with finger pointing and frustrations.  That next day after finding out the news I thought I could go back to work. Let me fill you in at this time Libby had started daycare and she was an extreme mama’s girl.  So she didn’t do well at daycare. I am at work around 6:30 am and I receive a call from Mike around 7:30.  Libby is screaming bloody murder and Mike is wondering what to do with her.  I get off the phone and instantly call my mom.  She will know what to do right????  I am at this point what most would call a basket case.  What I say next to my mom is something so horrible.  It hurts me so much too even type it and even more so to share it. I told my mom….”I can’t do this mom, I can’t be Libby’s mom.”  After I said it I lost it.  I felt like a monster for using those words, but those were my raw emotions.   I just wanted out. I wanted my easy life back.  I didn’t want to have these kinds of worries. I didn’t want the responsibility of taking care of Libby.  Horrible monster is what I describe myself as at that moment.

I didn’t make it very long at work that day.  I went home before Mike even left to take the girls to daycare.  Libby had calmed down and was sleeping.  I stayed home that day with Libby.  I crawled into bed with her in the bassinet beside me and cried myself to sleep. I would cry myself to sleep for many nights to come.  We were having to give Libby medicine at 2:00 am so I really wasn’t getting much sleep the first 4 months home with her. We also had to give her meds at 10:30 pm.  I am sure the sleep deprivation didn’t help my emotional state any at all.  From that day forward I didn’t even know who I was, what I was doing, or where I was going most of the time.  I was so alone.  Most people didn’t even know what was going on with Libby.  It was just something I had a really hard time sharing with people. Because again I thought I was alone.  Months went by before I realized what was wrong with me.  I read a book and it described grief. A light bulb went off.  I was totally grieving for the perfect child I had in my mind.  We didn’t set out to adopt a child with disabilities and we both strongly agreed we weren’t the type of people that could handle it. So when handed this what seems to be a perfect baby girl and be told.  She is never going to walk, she is never going to talk, I was in complete shock.  There are people out there that have in their hearts and passion for life are to take care of children with disabilities.  I never in a million years thought I would fit in that category.  Once I realized it was normal to grieve the life I thought I was going to have with two perfectly healthy and “normal” children, I was finally bringing my head above the water.

There have been a couple things that have gotten me to where I am today.  For starters, my faith and church family have been right there for me when I needed them most.  Kermit our pastor had asked us to share our story on camera with the entire church.  I hate being on camera and Mike is a pretty behind the scenes kind of guy.  For some very strange reason, I knew we needed to do this.  A couple members from our church came over and asked us questions and videoed the whole time.  Well an infant and a very squirming 5 year old made for an interesting time.  I just keep saying seriously if you need to come back and try for something better please do.  He insisted that he got what he needed and we should be good.  So then it was the day we had to sit in church and watch ourselves on camera.  I was in tears the whole sermon and during the video.  Kermit did an amazing job.  After church so many people came up to us and said they will pray for us and that they had no idea.  This was it …. Our deep secret and heartache was now out there for the world to see.  These was just one of God’s ways to help us heal and move forward.

Another form of understanding came in the form of books.  I have always loved to read, but when my good friend Karla gave me a book called Bloom: Finding Beauty in the Unexpected by Kelle Hampton.  This took me to a whole other level.  This mom shared her raw emotions of finding out her daughter has Down Syndrome.  I felt as though I was going through it with her. I could relate on so many levels with her.   She started out with a blog and ended up writing this book.  After reading that book I thought I really should blog as well.  I have been told a couple of times that writing it down helps with the healing process as well. So my sister gave me lovingmisslibby.com for my birthday. This really is one of the best gifts I have been given for my birthday.  I have found myself able to SHARE things that are extremely difficult to talk about.   Even if no one reads it…. I feel better!  Another great read was Schizencephaly Angles with Broken Wings by Tricia Dinnis and Stephanie Ziemann.  This books shares stories from family living and affected by Schizencephaly.  I tell you what, I cried with every single page read.  The saddest thing that I read in the book was to find out that every single family that hears the diagnosis for the first time is told the same thing.  Your child will never walk, talk or pretty much do anything.  It’s so sad that Doctors don’t think before they talk.  Because then as I would read on in each story I would find hope and joy.  Because many to walk, and talk and lead a somewhat normal life.  So from this I learned HOPE!

The last book I read I can’t wait to read again.  Out of My Mind by Sharon M. Draper.  This stories purpose is to show you what it’s like to live the life in a body of someone that can’t walk and can’t talk. You will find out though they have a lot to say!  This book taught me to have COMPASSION for those with disabilities. This girl found her voice and the things that she has to say are both heartwarming and heart breaking all at the same time.  I seriously read this book in a day.  I read it on the airplane ride home from Arizona.  I normally am out like a light when I hit the air, but my nap didn’t stand a chance against the book.

I have since SHARED our family story on our  local News Leading TV Station KFYR TV, appeared on ND Today and been interviewed by the newspaper and other TV stations.  All with the HOPE that people would hear our story and find the same COMPASSION in their hearts that I have found for people with disabilities.  May 19, 2015 has since been declared National Schizencephaly Awareness Day!  Thanks to Alison Ritter, Governor Jack Daylrmple, Senator John Hoven and Senator Heidi Heitkamp for helping the families living with Schizencephaly to have a voice and day to celebrate this rare brain disorder that most days causes much heartache.

I am happy to report I no longer have those horrible horrible thoughts running through my mind!  Thank goodness!  In fact now I can’t possibly imagine my life without Miss Libby in it.  She may be one of the busiest 1 year old’s I know with her therapy schedule, but I know I wouldn’t have it ANY other way.  My heart is so full of love for this little girl and I have big dreams and wishes for her.  All because God had this planned out for me!