I can’t believe it is February already.  I just blinked and Christmas is a memory, New Year has passed and what the Super Bowl is over? These past couple months have been so busy only to be slowed down by Influenza.  I always say I wish I had just a week at home.  Then just maybe I would get something done around the house.  Well I just had my week at home and my time was not spent exactly how I thought it would be.  Oh wait that is because Libby and I had influenza. It was a very scary week.  I was miserable, but I know I would be okay.  I was so afraid for what this sickness would do to Libby.  I felt horrible I can only imagine how her tiny little body felt.  She was a trooper and fought through it and she is doing much better.  We only had 1 ER trip.  That ER trip is what it took for her to break her fever, and smile.  I guess that is what I will do at 2:00 am.  What kid doesn’t love to make their parent look bad?  The minute we got in to see the doctor in the ER she was all smiles and no fever! Go figure.

With that behind us we are looking forward to the early spring that Punxsutawny Phil promised us! I can’t wait to get out and start taking walks with my family again. I am sure Libby will love the fresh air again!  Poor kid goes outside for only a few seconds.  The time it takes me to take her from daycare to my car is all she gets. Putting her in her highchair by the window helps, but it’s not the real deal.

February is going to be a month of first for Libby. She had an appointment with Dr. Murphy at the end of January and during that 3 hour appointment we have decided on a new treatment for Libby.  She is going to receive Botox and Phenol injections at the end of February.  She will received shots in the back of her neck with hopes of strengthening her neck and yet letting her shoulders and arms relax. She will also receive a shot in both calve muscles with hope to help her ankles and feet relax.  Then the last place she will receive Phenol injections in her groin area.  Libby had a hip X-ray done last time she was in MN and the results show that we need to be preventive with her hips.  She scissors her legs a lot and that can cause her hips to pop out. Dr. Murphy would like to avoid and prevent her from having hip surgery until after she turn 5.  So let’s pray that this all helps Miss Libby!  The scariest party is having to have her put under anesthesia.  I just hate that she has to go through so much, just to do the simple things in life like holding her head up and hopefully sitting on her own.  One of the best things I got out of the 3 hour appointment with Dr. Murphy was when he said, “Well Miss Libby you sure are a complicated yet miracle of a child!”  That pretty much sums up Miss Libby…. Complicated and Miracle…. Guess what?  I wouldn’t have it any other way!  As hard as this new life is some days. The days of laughter and smiles far out weighs the pain and sleepless nights.

This holiday season has completely snuck up on me. I am honestly impressed that I even have a tree and decorations this year. If it wasn’t for the help of Libby’s respite care Alyssa taking care of Miss Libby.  I probably wouldn’t have a tree or decorations up. Lately I feel like I am a day to day person and if anyone knows me… that is not how I work.  I love plans and I loves schedules. So between the stress of gift buying and child care I have come to the realization that… I need to slow down and just enjoy it all.  I need to get back to the real reason of Christmas. The Lord has done great things for us and we are filled with JOY. Psalm 126:3. This week has brought me so much JOY.  Miss Libby giggled like never before. This was a full out belly laugh for over two minutes! So thankful we were able to get it videoed and can share the pure JOY of a simple but yet AMAZING laugh! Libby is also doing so much better on her tummy time. Having Layken by her side helps a lot too.  The LOVE Miss Libby has for her big sister is truly something everyone should witness.  This week at one of Libby’s therapy session at the house she was done.  She was tired and just wanted snuggles form mom.  Then walks in Layken full of energy and up perks Miss Libby!  She will practically jump and twist out of my arms to find her sister!

Yesterday I received in the mail a gift of JOY in the form of three bottles. No they were not bottles of wine, although somedays wine does bring me JOY.  They were bottles of oil. Just like the Christmas story and the Wiseman bringing gifts of Frankincense, Myrrh and Gold… I received bottles of Serenity, Citrus Bliss and Balance! I absolutely love these oils.  I have Serenity for helping calm and help Layken relax at bedtime. Citrus Bliss we call the friendship oil. Because in our house FRIENDS are important and we want to have happy and positive friendships. Now Balance is new to our family, but one that I have been waiting for!  You should know it was even on my wish list! So to receive it for free right before Christmas was a double bonus.  I didn’t wait long after getting this oil out of the package to rub it on Miss Libby’s feet and spine! I will let you know and my sister can confirm this.  Miss Libby was crabby. She was sure to share her unhappiness with Auntie Cole over the phone even. So I took this oil and rubbed it on her feet and within a few minutes I had a happy and calm baby. Will this work every time, maybe not?  Just the thought of applying something natural to sooth and comfort Miss Libby is a huge BLESSING in my book.  On numerous occasions I have seen great things happen with the use of DoTERRA oils with my family. I am so thankful for all the people that have introduced and pushed me towards the use of these amazing products.  I see a BRIGHT and HAPPY future for our family!

So as I take a moment to slow down. I reflect on what is truly important in my life this holiday season. I am so excited to have the openness to learn and grow my FAITH. The people that I have in my life right now are very supportive of my faith journey. It’s very important that you surround yourself with positive and supportive people. Don’t let the negative people pull you down and lose your focus. Most importantly learn to FORGIVE. There is nothing worse than walking around with anger and resentment. Be thankful God has the ability to forgive and so do we!

My FAMILY means the world to me! I look forward to the next few days to have us all together under one roof. I am THANKFUL that we are all able to find time in our busy lives to get together. I pray for those who are missing loved ones that cannot be with them for the holidays.  May you have comfort in the MEMORIES you have shared in the past.

I am so very happy that my HEALTH has been decent. I am trying to get back into a workout routine. Because my health and strength is very much needed.  As Libby gets bigger the stronger I need to be. Helping her do things that come so naturally to others can take a toll on us.  So I will be trying to take care of myself first. Kind of like the safety instructions given before a flight. “If necessary please secure your mask before helping those around you. “

I pray for each and every one of you reading this. May you have a Very Merry CHRISTmas and a blessed New Year!  Thank you for your love and support this year! Cheers to a Healthy Happy New Year!

As most of you know it’s been 16 months since Miss Libby has graced us with her ever loving smile.  So for the last 16 months I went through life with this illusion that I was wearing a cape and had super powers! It was a yellow cape, for those that were wondering. My super powers were to basically never need sleep and have the do it myself attitude. Being a mom of 2 amazing girls, work full-time, own, manage and work a small business.  Don’t forget being a wife, doing laundry, doing dishes, chauffer to and from therapy, coordinate our family’s schedule, be a friend when time allowed and volunteer when I can.  Notice I didn’t say I was a cook.  You got that right ladies, Mike is our family chef!  He helps with other things as well, but that is my favorite thing he does. All in all I am pretty blessed with his willingness to help.  I just keep thinking I will get caught up, and things will get easier. Yes I said it be a friend when time allowed.  I found myself stuck in my house most of the time if I wasn’t working.  Why didn’t I leave the house? Well because it was just easier to never go out in public….I was afraid and in denial.  I didn’t want people to see that my 5 month old wasn’t even holding her head up. Now a 16 months she still has her moments when she can’t hold her head up…. But guess what she CAN hold her head up!!! Libby is a fighter and so amazingly strong.  I was focusing for so long on the things she can’t do, instead I needed to focus on the things she CAN do.  It wasn’t until our first appointment with the doctors at Gillette Children’s asked what she can do and I said not much.  They looked at me and started asking questions.  Can she sit in a highchair? “Yes” Does she drink her bottle well? “Yes” Does she recognize people and voices? “Yes” I think you can see where I am going with this…. She CAN do things!

We do go out in public a little more, but it’s still hard not going to lie. I love to shop, but I can never just run into a grocery store after I get Libby from daycare. The first time I realized this was back when she was in a carrier car seat. I was heading into Target and got ½ way into the store realized she would take up the whole cart with her car seat.  So back to the car I went.  I pulled out her stroller and place the base in the stroller…. I got as far as the carts in the store and realized I still can’t get all the things I needed. I thought maybe Layken could help me push a cart and I would push Libby in the stroller.  Well Layken tried, but she was barely tall enough to see over the cart and for the sake of everyone’s heels we packed up and went home.  Shopping now only happens if Mike or I can be home and the other goes. Or we both go, one pushes the cart and one pushes the stroller. Shopping alone with Libby is about to become doable. Our daycare received a grant and purchased a Go-to-Seat.  This handy little seating system gives Libby the support and safety to sit places we thought she may never be able to!!!!  I can’t wait to try it out!

So some things are getting easier, but it’s is still very taxing on myself and our family. With Libby’s sleeping habits all messed up I became an emotional wreck two weeks ago! I was visiting with her PT from Early Intervention and I lost it.  I might breakdown when close friends are near, but her PT. I was embarrassed. Everything happens for a reason.  She saw my pain, my stress and heartache and recommended we consider applying for respite care.  I had no idea we could have such services.  Still a little reluctant I said I would talk to Mike about it.  Before Mike even got home that evening, I was dead set on getting respite care for Libby.  I just keep thinking of all the things I could do again.  I can work out again, I can read a book, I can do laundry without tears, and most importantly Mike and I could have some alone time.  We have had a few sitters here and there, but it’s hard to ask them too much. We do want them to come back after all. We have amazing friends and family that help us out too.  Sometimes it’s nice to be able to do things with our friends and family though and not leave our children with them. I have thought I might even cook a meal again. Okay maybe not, but it does sound exciting. So now my mind is made up we need help. Luckily I didn’t have to twist Mike’s arm too much he agreed! We are starting out with 30 hours a month of HELP.  When we first agreed to 30 hours I thought wow we will never use that much.  Guess what one week later I am thinking more might be better. We will take whatever we can get. One fear I have with receiving help is, will that make me less of a mom? I know I need HELP, and no I will not be less of a mom.  I will be a better mom, just by being able to take care of myself.  I will be a much better mom.  I can’t wait for the HELP now. Because soon I will be a healthier, happier SUPERMOM again!

I have been struggling and extremely frustrated these last few weeks.  The weight of taking care of a child with special needs isn’t easy and it surely isn’t a part-time job. Please don’t thing I am writing this to gain pity from people.  I only write to help myself grieve and come to an understanding of things for myself.  If along the way you find understanding a compassion for families in my situation I have succeeded as well.   I hear it all the time… “You are an amazing mom.”  I think to myself, “Are they really talking to me?”  If a person only knew how I feel I am failing as a parent.  I have read so many articles about parenting.  I know I am not the only one that feels like such a failure sometimes. But knowing it and feeling it are two different things. I would give anything to take back the moments I get so frustrated with Layken and yell at her.  But seriously I know she heard me ask her 10 times to get her room picked up or throw her garbage in the garbage, not just put it on the floor. I have come a long ways on not being such a control freak and neat freak….but I still think our home needs to be respected and clean.  After all we are paying good money to live in it, we should take care of it. I also want nothing more to raise children that respect no only people but property.  I want for my girls to be good friends as well. I am sure at least once a week I will tell Layken the properties it takes to make a good friend.  Because I will see her being bossy or just not listening to her friends. It scares me to think I have not instilled the good qualities in Layken to make her a good friend.  This is a work in progress and I am trying everything in my power to be a better example to Layken and Libby on what it takes to be a good friend. On a positive note, I have received a message from a friend who has a kid in Layken’s class.  This boy also has a sister in Kindergarten this year. Well one day the little sister was having a hard time. Layken and her brother went up to her, put their arms around her and walked her to her line before they went back to class. This is one of those proud mamma moments!

It’s moment like last week when it’s flat out hectic at bedtime. Not only do I want the girls to get some good sleep… I am hoping I can’t catch a few solid hours of sleep as well. We stopped everything and it was time for a story. Libby wasn’t sleeping yet so we had story time together.  Layken was reading a book to us and it had the word woof in it numerous times.  Every time Layken would say the word woof, Libby would full out giggle and laugh.  It’s that belly laugh that we as parents just can’t get enough of.  Libby’s giggles and laughs are becoming more frequent, but yet never enough for me.  I would give anything to hear her giggle every single day.  Again it’s something that we think is so simple for most, it’s so hard for Libby. Thankfully she her smile is non-stop every day!

Last week something very horrible happened and it has me so scared.  I know life is never long enough and we need to live it to the fullest.  I have grieved the death of some grandparents, and sadly some close and dear friends while in high school, but for some reason the death of a child not much older than mine hit me hard.  This sweet baby girl was suffering from the same rare brain malformation Libby has.  In the beginning I was in such denial of her condition.  I thought without a doubt in my mind, Libby will overcome this.  She won’t be that vegetable the doctor told me she will be. She will overcome all odds.  I still have some of these hopes and dreams for her.  I have just been punched by reality that it might take her longer and it is surely going to be a bumpier road than I had planned.  None the less we will keep on swimming! Then just when things are going smoothly, I hear of a death of a far too young child. The scare of losing Libby and or Layken for that matter is something I need to get out of my mind.  I should instead look back to the MOMENTS that I will never forget. Seeing the love my two girls have for each other is just the beginning of these UNFORGETTABLE MOMENTS.

I know everyone has probably experienced the nights of seeing every hour on the clock.  One night here and there isn’t so bad, but when you go months at a time it’s flat out exhausting. If you see me wondering around looking like a zombie (No I am not part of the zombie obsessed group of people.)…. Please just return me to my home and preferably to my bed. Libby has us pegged. On a typical night she fusses around 4:30 am we get up and give her a pacifier and we all go back to bed.  These nights aren’t too bad.  It’s the nights when we put her to bed around 9:30 -10:30 and she fusses every hour after that. Again we get up give her a pacifier.  She can’t use her hands due to her tone being so bad. Otherwise we would make her get it herself. Then anywhere around 1:00 am to 3:00 am she is awake, eyes wide open. You might think that’s not a big deal… Just let her cry it out is advice we get from everyone…. Well let me tell you that doesn’t work with a kid with Schizencephaly.  Libby will cry and cry and cry.  We enter the room and she can shut it off so quickly.  This is extremely frustrating. Most of the time I will stay up with her and we just hang out. L Sometimes Mike will get up and take her downstairs and they fall asleep in the chair.  She usually falls back to sleep around 5 or 6 am.  Great my alarm just went off at 5:15 to go to work!!  I get asked all the time…. How do you function on such little sleep?  I honestly don’t know how to answer that.  It’s not caffeine, because that makes me sick. I do have 1 cup of Organo Gold Coffee a day and that gets me through the morning and early afternoon.  Once I get off work it’s go time.  There isn’t a break.

A typical day with Libby after I get her picked up from daycare consist of a lot of running around.  With Libby chilling in the back we head off to get Layken from school. Then it’s off to Therapy Monday and Tuesday at our house. Some Wednesdays at our house and now we are adding water therapy some Fridays. So one might think you have Thursday off!!!  Yeah right.  Thursday is MY busy day.  We get home on Thursdays get everyone settled in. Do some dishes and laundry.  Then around 5:00 I start spray tanning until 8:00 at night… Guess what its bed time for the girls and finish anything I need done before I go to bed around 11.  Say my bedtime prayer.. Praying for a full night’s sleep.  Now that school has started we start fall activities for Layken.  So Monday’s after Libby is done with therapy we will get caught up on all homework and reading for Layken fit in dinner and then it’s off to Volley ball practice. By the time we get home you have guessed it… It’s time to start getting ready for bed.  I have amazing friends and family that always say they will help with whatever they can any many of them do.  But the one thing I ask of you is the next time you see me… PLEASE don’t tell me I look tired…. I know I am tired and don’t need a reminder. I didn’t write this for a pity party. I just hope it makes people aware of the struggles of raising kids with special needs. There are people that have it way worse then I do is what I keep telling myself. I have learned compassion for people with struggles unknown to me.

This is by far my favorite time of year.  I love the change in weather, and the cool fall nights made perfect snuggled up to a campfire.  We have had a couple cool days, but the heat seems to be kicking in again.  Just in time for the kids to go back to school!  I feel for those kids sitting in their classrooms, only wanting to be outside enjoying the last few days of summer.  Because I am doing the same thing while I sit at work.  Looking outside just wanting to feel the heat of the sun on my face. But just like the kids I stay inside and get my work done.

Speaking of school, I did it!  I sent Layken off to 1^st Grade.  She is a very excited 6.5 yr old!  She was placed in the class of the teacher she wanted.  Mommy wanted her even more (she gives homework).  Yes I want homework….just not too much.   Layken loves to learn and needs a teacher that can fulfill her desire to learn! I can only hope and pray that Layken continues to love school as much as she does now when she is a senior in high school. So most moms would say they are sad to send their kids to school.  I wasn’t sad at all. I was probably just as excited as she was!  We did your typical 1^st day of school stuff: special breakfast, perfect outfit and of course the 1^st day of school picture.  All of this brought such warmth to my heart.  I am proud of Layken for the beautiful child she is and her eagerness to learn.  It wasn’t until we all had to start going our separate ways.  Mike taking Libby to daycare and myself taking Layken to Turner’s house before school.  Layken gave Mike hugs and kisses and then it was Libby’s turn to take the strong hug and kisses from Layken.  Layken gets in the car and says to me…”Mom…..Libby will hug me back some day right?” Why does this 6.5 yr old have to be so worried about the future?  My response, “I sure hope so Layken.” I held it together how I don’t know, because just typing it I get this horrible lump in the back of my throat and my eyes begin to burn.

I spend lots of days, well I guess you could say, I spend every day thinking about the future too. At first the fear of the unknown was crippling at times to me…But then I realized.  It’s not unknown.  God knows and has created the path.  I just need to remember to trust in him and the path in which I need to take will be so clear. There are a couple Bible verses that I have to read often just to help me coup with a day. Joshua 1:9 was the first verse that was near and dear to my heart. “Have I not commanded you? Be strong and courageous. Do not be afraid: do not be discouraged for the Lord your God will be with you wherever you go.” Like anything else I have good days and bad days.  Some days it’s so easy to let go and trust in the Lord. The next day just feels like a huge weight was dropped right on my chest and I don’t have the strength. After Layken made that comment about Libby not hugging her….. Here came that huge weight crashing down on me.  I ache for the loss of the ideal sister she was hoping for. I ache for Miss Libby and the struggles she goes through.  I hurt even more for the pain she may feel but can use her words to tell me.  I would as most moms would…. I would take her place in the blink of an eye.  No child deserves to suffer.

I managed to make it through another day. Therapy was done for Miss Libby and we finally had some down time.  It was just Layken, Libby and I.  We were sitting on the couch talking about our day, when Layken gets on my knee and says give me a horsey ride mom.  I was holding Libby at the time.  When I started bouncing my girls, Libby let out a giggle!!  A full blown giggle!   For most parents of 15 month old kids this happens multiple times a day.  But for Miss Libby I can count on one hand the times I have heard her giggle. This wonderful bonding moment with my girls I will cherish for a life time.  Thank goodness I had my phone near and was able to capture it as well!! She did it for so long we were even able to call Mike and Grandma Donna (for her Birthday) and share in this joyous moment.  As you can see my days are emotional roller coasters and I hope no one gets caught in a seat next to me when we are going down… But please hop in when we are soaring high!  This moment was exactly what I needed to help heal and fill my heart from the morning conversation with Layken.  Please, please never take for granted your children young or old. With that said I leave you with this: Embrace the season of LIFE you are in whether it’s a season of rain or a season of sunshine. God is using it to shape you and prepare you for the future.

Last week Mike, Libby and I set out for Burnsville, MN for Libby’s first appointments at Gillette Children’s.  I honestly went into the trip thinking it’s going to be horrible, they are going to tell us nothing but bad news.  Because that is what doctors do right?  I thought the dietician was going to tell me I have been starving my child and I am feeding her all the wrong things and we need to get a G-tube placed.  Then I thought the EEG and Neurologist were going say she is having seizures and we will need to figure out medications to control them. Last but not least I figured the PM&R was going to say she needs leg braces, and Botox. So many thoughts going through my mind. What if she has to have a g-tube and has difficulties during the surgery? What if she get an infection?  Will daycare keep her if she has to have a feeding tube? Will I have to quit my job to take care of Libby?  What if we can’t get her medications for seizures figured out?  How will she handle the botox injections?  Will she like her braces? I could go on and on, but I think you get the point.  To top all these random thoughts off Libby hadn’t been sleeping well at all.  By not sleeping well, I mean not sleeping.  She would wake up around 11:30 (bed time was 10:00) and she would maybe fall asleep around 4:00.  Which makes my 5:15 am alarm even more brutal. Sleep deprivation mixed with horrible random thoughts equals one stressed out Momma!

Back to the drive there…..6.5 hrs in a car with Mike and Libby.  This should be smooth right? Haha those were not my thoughts at all.  Libby hasn’t traveled for long distances much since last fall when we drove to Denver.  Mike well he just doesn’t have patience for a crying baby while he is driving.  So if you are thinking what I am thinking… this is going to be the most horrific, and scaring trip ever.  I was also looking at the fact that we were coming back the very next day. So 13 hours in a car with Mike and Libby in a 24 hour time span wasn’t looking so appealing. J

I couldn’t have been more wrong.  Libby was a great traveler. (As long as I was right by her side.) Mike did great chauffeuring us around as well! Mike and I even got a chance to finally write down all the concerts we have gone to. We have thought of 57 of them and some of them we have seen twice.  It’s hard to remember all the opening acts. It was fun to reflect on the some of the great times in our lives. We love music and most of all the friends that have gone with us to these concerts. I did try reading my book to Mike, but he didn’t enjoy that nearly as much as I thought he would. J  Once we made it to the cities we made a quick stop at IKEA just to get a few things.   Mike and Libby both did great during this detour.

The next morning we had to have our sleep deprived Miss Libby to the clinic by 8:00 am for her first ever EEG. She was an absolute perfect baby.  He turned the lights off after placing all the probes and she fell asleep.  We woke her up after about 45 min or so and she was super happy.  Next appointment was 10:00 with dietician. This appointment couldn’t have gone any better.  Karrie Larson was so great. She told us we are doing exactly would we should be doing for Libby.  It’s was nice to hear, “She is going to small and that’s ok.”  She gave us a few new suggestions of foods and other things to introduce to her… like a sippy cup and that was pretty much it.  We then had a break until her next appointment with PM&R Doc. So we headed over to the Burnsville Mall for a bit to walk and shop. Made it back to the clinic for her 1:00 appointment.  Dr. Ward was amazing. She explained so many things to us that should have been told to us prior.  A lot of it we knew, but from me being the researcher I am, but it was nice to have it medically explained to us as well. We walked out of there 1 hour and 45 min later with a prescription for Valium and the recommendation for custom braces, hip X-Ray, botox and phenol injections in the near future for Libby.  Again most of this we were kind of expecting.  But we love Dr. Ward and her aggressiveness and wiliness to help us get as much done in Bismarck as we can.  As much as we liked her, I don’t really want to travel to MN all that often.   So our next appointment is at 3:30, which would be ok, but we needed to drive to the St. Paul location. Thankfully Dr. Ward called ahead to the neurologist and told them we are on our way. J  Dr. Brenningstall was great as well. He went over the EEG results and said basically they were as he would have expected them to be.  They were abnormal. But during her EEG there was no sign of seizure activity.  So for now we will not medicate until we know she is having seizures for sure.  Yes a 1 hours EEG test isn’t that much, but we don’t think that she is having any seizures so no need to do a longer one until we feel she is!  Way to go Libby!!! So it is now 4:30 and we are done and on our way out of the cities.

I seriously can’t believe how amazing Libby was during this long, busy and stress full trip. We made it home safe and sound and all we had to do was wait for Layken to get home from the Medora Musical.  It was after midnight when she finally got home! She wasn’t even awake to notice we were home. L  Libby of coarse didn’t think she was ready to go to bed just yet. So around 2:30 she finally called it a night and so did I!  I think next time we might plan to stay a little longer, just so it’s not so much time in the car.

Thank you all for your prayers, text and facebook messages. We are so blessed to have such caring family and friends. We aren’t out of the woods yet, but I think I might enjoy the beautiful scenery while we are here!

Wednesday Libby received her first custom chair. I know that this will help her in so many ways.  It will provide her with the proper support to sit up and be involved in activities that other kids are doing.  She isn’t able to do much yet, but the hope is to get her upward and maybe she will become more involved. She is showing signs of boredom with just lying under a jungle gym.  But she isn’t able to sit in a bouncy chair just yet.  So that is the exciting part.  The sad part is…. Well it just looks so medical as Mike put it.   It’s so hard to see and think of your child’s limitations, but in all reality this chair/stroller will actually increase her chances to exceed.  Sometimes it’s just hard to get past the look.

Libby also was fitted for splints for her hands.  The hope is to help her hands relax and open them more.  Next will probably be braces on her feet/legs.  They too need to relax and we need to make sure they don’t start turning her feet inwards.  This girl takes everything so well and she is so much stronger than I ever could be.  She continues to fight to hold her head up every single day!  The best part about this little girl is her smile we get to see every single day!

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!

Our trip to Fargo to meet with the Pediatric Neurologist and a Genetic Counselor was what we thought to be just a normal follow up.  We honestly didn’t think we were about to receive the news of a diagnosis that will forever change our lives. We thought for sure they were just going to confirm that Libby was only missing her corpus callosum. Missing a corpus callosum sounds scary, but we were ready and willing to help Libby along with the possible learning disabilities she might have.  There was also a chance we would could even see only mild issues.

Mike and I decided to bring Layken along for this trip to Fargo.  We needed to meet with the Genetic Counselor on the Monday and then Tuesday we would see the Neurologist.   So we booked a room at a hotel with a cool pool thinking we would have some fun family swimming time.  We arrive in Fargo and head straight to the appointment with the Genetic Counselor, which happens to be at the hospital that Layken was born in.  So naturally this brought excitement and great memories rushing back into my mind.  This also brought many questions from Layken.  She knows her adoption story, but this took it to a whole new level for her.  It was fun telling her the story.  What we did that day while we waiting to get the call to come to the hospital, down to who held her first and what the nurse’s names were.  God blessed us once in this hospital beyond measure, why would I think anything different was about to happen.

I will get right to the point at how this appointment went, because frankly that is exactly how the genetic counselor handle this appointment. To her defense she didn’t know that we were unaware of Libby’s full diagnosis.  Somewhere down the line wires got crossed and we weren’t told the whole diagnosis in Bismarck and the message of her being adopted wasn’t delivered to the doctors in Fargo either.  She begins to drill us with our medical/genetic history.  She looked at me and I am pretty sure she could tell I was so confused.  She then states, “When a child is diagnosed with Schizencephaly most parents will run some genetic testing to make sure it’s safe to have more kids.”  (BLANK STARE) ?!??!?! SCHIZEN what???  This is when the storm cloud over took my head.  I didn’t cry, it was like an outer body experience.  I had no idea what was going on.  I just had a blank stare and no words could come out of my mouth.  I held on to Layken and just focused on Mike and Libby.  I couldn’t even look at the women that just told me that my child has very little chance of accomplishing much in life.  She goes on to tell us about different test we can run to determine the cause.  I am pretty sure she could tell by the look on my face, I only wanted out of that room.  We told her thanks, but we don’t wish to run any genetic test at this time as it will not change anything.

We get to our car and load the girls and that is when it happened.  I completely lost it….  Tears welded up and the sobs from deep down came roaring out.  Thank goodness for Mike, because at that moment I was so weak I would have fallen to the pavement if it wasn’t for him.  I was just so mad, so confused, so hurt and just flat out lost.  Who did that lady think she was to tell me my daughter was missing more than her corpus callosum?  I just don’t understand.  I look at Libby and see nothing but a perfect little baby girl.  How could there be something wrong with this child I prayed and wished for?

We head to the hotel.  What was supposed to be a fun family evening swimming turned in to me just holding on tightly to Libby as she slept and Mike and Layken swam in the pool.  I kept thinking, what next, how do we get past this?  How is this going to affect Layken?  Maybe they are wrong? This isn’t happening to me.  Why would God do this to me?  Is he punishing me for something?  That day was the biggest blur. To this days it’s hard to think about.

Day two in Fargo.  We head to see the neurologist.   I spent the night praying for a better outcome.  Because there is a chance that genetic counselor had it all wrong right?  We head into the office and again I can’t believe how calm I am.  I am sure it was still shock.  Sadly this appointment was no different from the day prior.  He held Libby and moved a couple things in front of her face, to see if she will follow them.  Which she didn’t.  Then he looks at us and says, I am sorry to say, but she will NEVER WALK or TALK……. There was no, but there is also a chance she talks, and walks with assistance or even does both just fine.  The appointment again was pretty much done at that point.  I wish I could go back in time.  I have so many more questions.  He seriously didn’t even give us much of an explanation of what Schizencephaly was, how it was caused and what her future could truly look like.  Okay, maybe he did.  I really don’t remember.  I blanked out completely.  I really only remember him saying she will never walk or talk. He sets us up with a follow up appointment in Bismarck and on our way we go.

Again we get to the car but this time I don’t cry.  What is the point?