What Does March 25th Mean to You?

What does March 25th mean to you? 

Maybe not much just another day but for me this day has a couple of emotional events.......

March 25, 2002........ was a day that I will never forget I woke up and went to school I was in collage at the time and to my surprise my first 2 morning classes were canceled. So as I was driving home I remembered that my mom was at my grandparents house that morning to help out so instead of driving home I went to there.  My grandma wasn't doing the best She was sick with colon cancer so I decided to go there and have breakfast with my grandpa and cherishing every second with them both. As I left later that day my grandma waved bye with her pointer finger, she hadn't really moved in a couple days and I could tell it took so much energy for her to do that but it was something I will never forget and I thank her for that moment because little did I know less than 30 min after I would walk out that door would I get a call saying she had passed away. I will never forget that morning from the oatmeal and grapefruit with grandpa to the finger wave and kiss bye to my grandma. I am so grateful for how that morning played out, I will always wonder how my classes were canceled to give me such a special and precious memory to always remember. I don't believe it was a coincidence, I believe it was meant to happen that way! 16 years later and I still miss her so so much!

March 25, 2015.......this day was suppose to be Emma’s due date. When I received the news that this was Emma’s due date my heart burst because I knew my grandma had something to do with this special baby being sent to us after a few miscarriages. 

The real March 25, 2015...... turned into the most devastating day of my life. The day Drs told me that my baby, only 5 days old, would never do or be anything that I thought she would be. The day they told me to take her home and love her. The day they told me she might not see the age of 1, 3 or even 5, they just didn’t know. The day I cried so many tears I couldn’t cry anymore, some tears falling when I didn't even know I was crying. The day I watched a 4 year old hold her little sister, sing to her and show me there was nothing to be afraid of she wasn’t all that different....she was Emma. The shock, the pain, the sadness, the fear, all of it I can still feel to this day. Lissencephaly was a word I had never heard before and it was a word I didn’t want to look up online and it’s a word that you should never google. But when you are on Facebook and Instagram search away because that’s where you get your real life statistics, not google. That’s where we found families just like ours, yes some sadly have lost their child early (way too early) but some celebrating 10th, 15th, even 20th Birthdays. I feel that Emma being diagnosed on this day was also my grandma saying it’s ok I’m here to help and watch over her, stay strong. My heart just breaks when I think about others going through this day. When other Lissencephaly families describe their diagnosis day is sounds so familiar to ours and takes me back and emotions come flooding, tears streaming that I didn't even know had started to fall. 

March 25, 2018.....now for today this March 25th. This day I still get emotional as I am sure I always will but I will also smile and cuddle my beautiful little girl. The girl who has done more than Drs ever said she would. The girl who has flipped our

Lives upside but made us better people. Made us who we are today. Finding out what life is truly about, cherishing every second we are given together as tomorrow is not guaranteed for anyone. I still feel my Grandma is watching over sweet Emma and Ava, as I feel she would have absolutely adored both my girls. She would have begged Ava to wear her hair down more (I just know it) and she would have gushed over Emma’s curls. 

Today I am grateful....grateful Emma is still with us and for the most part still doing well (sadly seizures have returned). I love you Grandma and I love you Emma. Today will always be a day that both of you are in my heart. 

Hooked up to EEG to monitor seizure activity

Big sister singing to her little sister on Diagnosis Day

My Grandparents

Me as a child with my grandparents

Emma showing us that smile we were told would NEVER happen 

Us celebrating Emma turning 3!

Sisters and Best Friends Forever

March 25th will always be a day I have feel every emotion possible..........

Please Don't Feel Sorry For Us.......

I have decided to write this blog post for many reasons, but the main reason is because now that Emma is getting older her disabilities are becoming more visual. We get lots of stares and pity eyes as we are out and about in the community. But to be honest we aren't sorry or sad we are happy, yes we hate what Emma has to go through, it's heartbreaking but that is not what makes Emma who she is. Emma isn't just a diagnosis she is much much more. However, reading online about Emma's diagnosis or getting information from medical professionals it all says Emma wont be much or do much.....she will just be a vegetable. She will not breathe on her own, she wont eat on her own, she will never smile, laugh, or show any emotion, she will never really recognize or know who people are and she might not even make it to her first birthday..... Well, if you have been following Emma on Facebook, Instagram or through this blog you have seen that none of that is true for Emma. No, I don't blame Drs for giving us that information because sadly that is all the information that they have to give us, since Lissencephaly is so rare (1 in 100,000), they don't have much information to go off of. I can tell you Emma has surprised a lot of her Drs. and they are super happy about it, she teaches us all something new everyday! 

So I guess what I am trying to say is please don't ever feel sorry for us, we love our life. Emma has brought more into our lives than she could ever take away. She has taught us that no moment should pass without living it to the fullest, creating memories everyday, even if it's something simple like paint-time in her stander with big sister, bike rides, or the opportunity to take a dance class. We want to help Emma live the life that she would want and what little sister wouldn't want to be a dancer like her big sister.

Dance Class with her new Dance outfit. Too cute!

Yes, our life is hard, but honestly who's life isn't???? We all have our battles and they just look different but we all struggle. At some point or another I am sure we all feel as if it's never going to get easier, but we have to get up every morning wipe our tears and push forward, not dreading the end but cherishing every moment and memory that we make up until the end.  We adjust and find our new normals often but it works out and we push through. If Emma can do then so can we and so can you!

These are some songs and quotes that we listen to often.

This first one bring tears to my eyes every time but I love it.....Brandon asked my mom to make him  a shirt that says.....
SHE'S WITH ME.....and he wears it proudly....

If you've followed for awhile you know we love this song. Emma's life is full of battles and uphill climbs. There will always be some sort of mountain and she is always ready to climb it. She is a true fighter and never gives up!

This is HAPPINESS! 

We did not think that this is what our life would be like as parents,
we could pity ourselves, but we choose to be happy 
and cherish every moment we are given as parents to our precious girls
We love you Ava and Emma!

Having a special needs child has changed us, made us better people, opened our eyes to what life is really all about.....loving each other for exactly who we are!

Tell me she's not a happy girl....and adorable too

The connection is more powerful than I could have ever imagined..
Sisters and Best Friends.

This is Us....BLESSED!

Staying Strong After The Devastating Diagnosis.....

March 25, 2015 we were told that our sweet newborn baby who was only 5 days old had a terminal diagnosis. The world stopped, the tears were uncountable, you could hear our hearts breaking. How long did we have with her, how would we tell her sister, what will our lives be like, will she ever leave the hospital, how can we do this, and will we make the right decisions. These are all the things plus a million more that went through our minds as the Drs. enter the room with so much unknown information. Emma is pretty rare (1 in 100,000) there are not many Drs. that know about her diagnosis. Reading the info given to us from 1995 (she was born in 2015) was so limited and heartbreaking at the same time. What was Emma's life going to be like, will she even have one. We were told to take her home and love her because she might not be with us very long.

When I look back on diagnosis day I think about how uneducated every one in that room was. We all thought (including Drs) that Emma would just be a vegetable from the information that was given to us. What we didn't think about was all the unknowns, no one knows everything and definitely no one can write someone else's story. Only Emma can write her own story.

I know that nothing can take away the pain from your child receiving a terminal diagnosis like lissencephaly. But these quotes help me everyday to refocus when I am down. I wanted to share them in hopes I can help someone else who is struggling with the heartbreak of your child receiving a devastating diagnosis. Please help us to reach others by sharing this blog post, sharing Emma's facebook page and/or instagram page.
Facebook: https://www.facebook.com/Embracelifeemma/
Instagram: embrace_life_emma


Staying positive and strong after such a heartbreaking diagnosis, like lissencephaly is very hard. Here are some inspirational quotes and stories that have helped me to see our life in a different light. We are blessed that we were given Emma and we will never see it as sadness or a pity party. Yes, we are sad she has to go through what she does but we will never be sad she was given to us.

I always worried they wouldn't have a connection and boy was I wrong. Ava is an incredible person because of Emma and we are so thankful for that.

Emma had a rough year last year and I never thought she would regain her strength but slowly she is and I felt so helpless. But again she is showing us she will Defy the odds the best that she can.

She is a fighter all of our children are.......

It's ok to cry and it's ok to be sad but wake up everyday smarter and stronger than yesterday. As the job of a special needs parent is not an easy one. 

Emma is the best tour guide ever!

I never thought I could care for a child with special needs....I wasn't strong enough but Emma gave me that strength

Our family has grown and learned so much over the last 2 (almost 3) years

Creating awareness for Lissencephaly in hopes we can help other families that find themselves in our same position

yes this is hard but we have gained more than what has been taken away from us

Everyday we learn something new and we have to find a "new normal" to fit with our new situations. Embrace the change and learn it will happen more than you think. Finding "new normals" is actually what becomes normal.

LOVE THIS

New Normals are okay 

It's ok to be sad.......

Emma's life is unknown...really all of our lives are unknown. So let's not worry about the end of the staircase and just enjoy every step of the way. Embrace it, and cherish it!

Breathe

We were told Emma would never smile, laugh or show any emotion but as you can see from the pictures on this blog she made that miracle happen. So we believe in Miracles, life is a miracle

To: Ava
Love: Emma

Here are two more short stories that I love to read from time to time.......

Welcome To Holland

By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

The Brave Little Soul

"Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean?" She asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued. "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this- it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer- to unlock this love- to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's harts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."

God and the brave soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment the brave soul was born into the world, and through his suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and come together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, and some regained lost faith- many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place.

The miracle had happened.

God was pleased."

–by John Alessi

EMBRACE LIFE

2017 = Decisions, Heartache, Seizures, and..........

Feeling Blessed?????

As I reflect on the last year my heart hurts from all the decisions we have had to make for Emma. Some wrong, some right and some that we will NEVER think about again. Decisions from medications, treatment options, diets, doctors, equipment, and seizures. But with all of the decisions and heartache, between thousands of seizures, we feel blessed. 

Blessed??? you ask how can you feel blessed, you are watching your daughter suffer through multiple seizures a day, watching medications and treatments not work, and you are constantly tired. Well I would have to say yes to all those things, but here are some other things you may not see that help us to see our blessings......

*Teamwork between two parents who love their girls more than anything

*Amazing family who calls and checks in everyday

*Drs and therapists who call, email and check in ALL THE TIME just to make sure not only Emma is ok but we are ok as a family

*Drs and therapists who support your fundraisers, Help get you a Make-A-Wish (and rush it), and attend important moments

*Drs and therapists who research to find the best treatment and actually listen to our concerns and/or opinions

*Our Lissencephaly family who are always there to help; answer questions, suggest ideas and most importantly there to listen

*Amazing Foundations who help us to have family time (Mascot Miracles, Angels Hands Foundation & Embrace Life Foundation), make our lives easier (donating us a van Angels Hands Foundation), and helping us purchase supplies our insurance wont cover (Embrace Life Foundation).

*Brandon and I also have great jobs with bosses who understand and are willing to work with us when things come up so that we can both be there for Emma.

*Having such an amazing 6 year old who loves her sister so much. Does incredible at school, dance and recently won an award in Reflections contest in photography. This girl continues to impress me everyday. 

*Lastly and most importantly is that Emma is still here with us and will be 3 in March! This year was really heartbreaking for our Lissencephaly community. We lost a lot of warriors this year, some I only knew from a few posts here or there on facebook, some I created a a real friendship with their mom and talked with them weekly if not daily, and then one I actually met and held in my arms. Losing a child is something that should never happen, as I watch these families lose their precious children my heart hurts for them as they are living my biggest fear. Attending a funeral of a child who has passed and has the same diagnosis as your daughter is......well lets just say tears for days (and still now as I type this). I just hold Emma and cry praying she will not be next and that we can defy the odds and live a long and happy life. Reality can be hard but so can living in fear, so we choose to live in the now. Don't get me wring sometimes that "now" can be sitting on the couch crying but it can also be cherishing every moment and creating incredible memories.  

Through all the ups and downs this year I have to say we ended on an UP!

Dec 6-12 we were able to take the trip of a lifetime to DisneyWorld and stay at Give Kids The World thanks to Make-A-Wish Utah. we had the most incredible time. Emma's seizures started to get controlled about 2 weeks prior to this trip the timing couldn't have worked out any better. 

Praying for less seizures in 2018!

Let Me Tell You 'Bout My Best Friend(s)...........

I Hope as you read the title you kinda sang it too.....LOL 

As a mom I have found that I have a few "FAVORITES" that help me tremendously with motherhood. As my life of motherhood has changed since Emma was born 2 years ago my "FAVORITES" have changed along with that. Being a special needs mom has made me realize how much I count on other special needs parents to help me when Drs can't. With Emma's diagnosis being so rare, 1 in 100,000, I am constantly turning to other amazing parents for help. Well, today I am going to try and help some other mothers and not just special needs mothers by letting you in on my  "FAVORITE" things that as a mother I have come to realize I can not live without......

#1: OWLET BABY MONITOR:  

This favorite actually gets me a little emotional for a couple reasons....first of all I truly believe this monitor has saved Emma's life on more than one occasion. Second it gives me piece of mind knowing that it's ok for me to fall asleep at night because I know she is being monitored and if something goes wrong with her breathing I will know immediately. Lastly, this company and their customer service has been more than amazing to me. Below I am going to go into detail on how it has saved her and how customer service has treated us. 

my first post about the Owlet 2015

*Emma started wearing this monitor immediately after we returned home from the hospital at about 2 weeks old (after receiving the news of her rare diagnosis of Lissencephaly which is 1 in 100, 000 as mentioned above). Emma was diagnosed at 5 days old after experiencing over 20 seizures at 4 days old. This monitor was a shot in the dark, hoping to help us better monitor Emma while she was at home because her oxygen would drop after seizures and if she has one in the night we wanted to make sure her oxygen would return to normal range in a fast amount of time. Honestly, the first year of Emma's life we didn't have a lot of notifications but it helped so much with the transition to her own room. At around 2 years old Emma's monitor became even more important to us because her seizures returned and were very, very powerful up to 20 a day again. We started new meds and even started a new diet. During this time her monitor started to go off nightly and not after a seizure just randomly at night. We would pick her up, rub her chest and whatever else we could do to stimulate her breathing again. We mentioned this to our pediatrician who said lets double check with an at home oxygen test. Which showed results exactly like what the Owlet was showing us. Emma was below a safe range of oxygen at night for over 2 hours and 35 mins. For a typical person the limit to be safe is about 5 mins. This pointed Emma right to a pulmologist who started her on some meds for her lungs (which are severely damaged due to aspiration, from the increased saliva from her new medication for her seizures), scheduled a sleep study, and put her on oxygen while she is sleeping. We would have never known that Emma was having these breathing issues without the Owlet. I fear the day that her feet actually grow lol the owlet typically only goes to 18 months 24 if you're luckily. But Emma's feet are incredibly small she is currently in a size 3 sock and we have a size 4 left (only style sock wish they had it in the new style, staying hopeful they will before she gets to a size 4). I am not paid by Owlet nor do I get any perks by sharing this story with you. I am just truly a huge fan of Owlet and I owe my daughters life to them. So thank you Owlet. I pray this story makes it to you and your employees. 

IT ARRIVED!!!!

*Which now leads me to employees and customer service........When we first received our Owlet we were struggling to get it hooked up to our internet. We tried to 2 days before I decided to chat in on the app and ask for help. Which directed me to one of the head people of the company who offered to come out to my house and help set it up (luckily we got it figured out over the phone) but seriously it warmed my heart to know they cared enough to help us get is set up ASAP that they would drive to out house (Owlet is a Utah based company about a 40 min drive from our house).  A while later I noticed that the monitor would no longer connect to the base station for some reason it wouldn't even turn on. I chatted in and within 5 min they trouble shooted with me and decided we just needed a new part, which was then shipped, overnighted and on my porch in hours. Our Owlet was one of the firsts to be sold they actually went on backorder for a while so ours is the first version and still working out some kinks and stuff. Which leads me to July 26, 2017 at 11:00 PM as I am leaning against my bed holding the owlet monitor and sock in hand (that I had been working with for 2 hours) as tears stream down my face because I can not get it to charge. I would plug it in and it would say completely  charged but then I would put it on Emma and it would say battery low less than 20%. What was I going to do I need this monitor, I wont sleep without it I can't. So again I decided to chat in and talked with someone named A (yes slight humor for those Pretty Little Liar fans LOL),  who was amazing to help me and we were able to get it to work that night. But when we ended the conversation she said if you have any other issues chat in and ask for me. I felt comforted knowing if I needed help again I wouldn't have to explain it all again. I received my email of my chat transcript (which I love because it helps me to remember our conversation and keep important info etc.) Over the next week I fought nightly to get the Owlet to charge most nights it would go off at 2-3 AM saying it had 20% left but it was fully charged (supposedly) when I put her to bed. I was getting frustrated so another night as I stressed about Emma being monitored Brandon said just chat in again on the app and talk with A again. So I did and she was so helpful making it easy to get it replaced as it was under warranty and she overnighted it! So today when it was delivered to my porch it was like Christmas Morning knowing my sweet angel will once again be watched over and I can hopefully get some sleep again. So thank you Owlet and Thank you A! I am sure at this point you are wondering how you can get one so I will make it easy for you just simply click HERE!

Post from January 2017: She can sleep in her own room

#2 iBaby Video Monitor:  https://ibabylabs.com/

This video monitor has also been a huge part of us getting Emma to sleep in her own bed. We are able to watch her right from our cell phones. We can see the temperature in the room as well as the humidity in the room. But most importantly it records motion. We have been able to capture some seizure activity on the monitor and send it to her Neurologist, I am also able to go back through the videos to check if i missed one through out the night . We have also caught some pretty sweet moments between sisters who love each other more than you could even imagine. Here are some videos and pictures that we have captured using the iBaby video Monitor. Warning the video is a seizure video if you don't want to watch then I suggest you skip the video and enjoy the pictures instead. 

SEIZURE WARNING

SISTERS <3

Sleep tight love bug

These items help me sleep at night
(this picture of the owlet sock is the old version see the new toeless version above, it's amazing)

I hope that you have enjoyed reading about my favorite must haves as a mom and a special needs mom. I also hope that you too are able to experience the amazing benefits that I have by using these 2 products. I would also like to mention that both of these companies also donated their product for us to place under our tree at the Utah Festival of Trees 2016, which helps to raise money for Primary Children's Hospital and they were very happy to be able to donate. I felt blessed knowing that I loved the product but that the company behind the product is just as amazing as the product itself.

Hope you are all EMBRACING LIFE TO THE FULLEST!