Dream Night at the Zoo

I feel like the luckiest mom. I enjoyed being with them tonight.

Dream Night at the Zoo is one of my favorite outings. I and the kids were excited to score tickets this year. Walking around the zoo and seeing some of the special friends we have made, other children in wheelchairs, kids with suction machines, feeding tubes, etc. It is an incredible feeling being around other children with unique circumstances and their families. It is a special night for each of my kids. They are all greeted by mascots and get to feel a sense of belonging with other siblings and families. They do not have to have a conversation with all of them, it is just felt. 

I love this picture of all 4 trying to size up to the bears.

Emylie was so excited to see her friend Cash, years ago the two of them helped at the Christmas Tree Jubilee dinner, she remembers and was happy to see him. While eating dinner Emylie also saw another friend, Lily cruising around in her wheelchair. Emylie sweetly called her name and waved. She wanted to go over and play with her... I felt bad because Emylie was in her stroller. I wanted her to be able to go and cruise over to tell her friend hello. To interact and just be a kid. 

Emylie was especially excited to get her picture with Cosmo!

The kids loved getting their face painted, meeting mascots, riding the train and getting to see the beautiful animals.

Looking at the elephants

We had a wonderful time together with some good laughs. I LOVE being with my kids and seeing them enjoy themselves. 

Miracle on Wheels - Fundraiser

We are so excited for an upcoming fundraiser!! 

Kirstin is planning a carnival, bake sale and silent auction 

on

Thursday June 15th from 4:30-7:30p

at Majestic Elementary

ALL are invited to attend.

carnival games.  Chick-fil-A dinner. Crumb Mini Donuts food truck. cotton candy.  snow cones.  bake sale with yummy treats. Silent auction.   

Come join the fun

If you would like to help volunteer at the event, spread the word/hang posters and flyers, are able to donate carnival game prizes, would like to help with the bake sale or any other way, please contact Kirstin Ferlin, 801-644-5194 or kirstinferlin@comcast.net

Thank you so much!!! 

Fundraisers in the works

We are working on some fun fundraisers to help with the converted van! We will announce dates and locations as soon as we have confirmation!! 

If you’d like to help with a fundraiser, please contact Kirstin Ferlin, 801-644-5194 or kirstinferlin@comcast.net

Check back soon!

Thank you!!

A Sister's Helping Hand

Looking through photographs today and I can't help but feel a couple hero's behind the scene need a shout out....

Emylie has two older sisters who are such a great support to her, to me and to our family. They are willing to help and while sometimes it may not always be fun they step up when needed and on occasion help out without even being prompted. I am incredibly grateful for the sisters they are and the relationship they have with each other, for the beautiful daughters they are and that I get to be their mother. I love to watch my children interact with each other and love to soak up the moments. 

It's non-repairable

Friday the 21st of April I was on my way to the elementary school when this happened. It does not appear too bad but the van was not drive-able, side air bags came out and after review, insurance has determined it non-repairable. I had two of our kids with us... Elianna was the one with the most bruising because of the airbags. She and I have back pain and Michael thankfully had no physical harm that we can see or he has mentioned. He talks about it often and asks if we are going to get in an accident almost every time we get in a vehicle. 

When I went to the tow yard to get the car seats and anything we wanted out of the van, it felt so empty.... the airbags hanging down... I felt a little sad. It seemed silly because it is just a van. It has been our mode to go on adventures as well as get our family around day to day.  

As I tucked my kids in bed that night, Elizabeth asked me why the accident had to happen. My emotions surfaced, I reflected to my brother's accident years ago and I felt so much gratitude that my family and I were all home and in the big picture doing well. I am grateful we are alive and that this was not worse.

I am grateful for the kind man who quickly pulled over and came and offered comfort. I do not know his name but he offered his hand while I was on the phone with the 911 dispatcher. I am grateful my children are ok and that I am still able to take care of my family. I am grateful the people in the other car were kind and not injured. I am grateful for the kind EMT's and policemen who took care of all of us. I am grateful for Mr. Wallace, Mrs. Chatfield and their willingness to help and make sure my other two kids were safe and arrangements were in place for them. They brought Elizabeth over so she could see we were ok and then Mrs. Chatfield stayed by her on the sidewalk. Elizabeth put on a brave face and held it together. She is a tough little girl.  School had just got out and all the school buses passed by. I am so grateful Emylie did not see the accident and that her nurse knew to tell the bus driver to keep going so that Emylie would not see. When we got home and told Emylie she hugged me and cried. It was so tender to see her reaction and how grateful she was we were all ok.  I am grateful David was able to take my call and quickly leave work to come offer support and give us a ride home. I am grateful that both insurance companies have been kind and easy to work with. I am grateful my Dad let us borrow his car for a couple days until we got a rental and grateful to have a van for a rental car for a couple more days...

It has been awhile...

Time has obviously passed quickly since last posting. So much has changed!! A little over 4 years ago we were able to buy a home that functions well for our family. The builder had a feeling to build the home so it would be wheelchair accessible. When we came around to buy the home, he then realized why. There are no stairs going into the home, so Emylie can roll in and out as she pleases. We have loved the new area we live in and all the wonderful people we have the opportunity of knowing.

Just before moving out of my parents home, my mother was diagnosed with ALS. It was so hard moving away from her. We offered to stay with my parents and help my mom however she needed. My mom wouldn't have it. She reassured me that everything happens when it is supposed to and that she and my dad would be ok. My mother gracefully handled the challenge she was given and passed away not quit two years from being diagnosed, in August of 2014. I miss her every day. Living without my mother has been hard! She was my best friend and a source of strength and peace. I know she is still close by and helping my family and I, in many ways I am sure I don't even realize.

Our family grew when we had a little boy in 2013. Holy smokes having a son as a little side kick is awesome!! The girls all love him so much and for Emylie to become a big sister was pretty special. She wore her "Awesome Big Sister" shirt with a big grin and as often as she could.  He definitely has a his role in our family, and I can see the little piece of why each member of our family needed him to join our lives.

Emylie has been doing well, aside from some hiccups along the way. We moved into our home and within a few days Emylie was admitted to the hospital for about a week. It was her first Christmas in the hospital. She stayed out of the hospital until August 2015 when she seemed to be having neurological issues which was first thought to be results of a stroke. She had her shunt revised and we took her home to recover. Over the following months little odd things kept occurring but not enough at the same time or severe enough to warrant intervention, until the day after Christmas when I noticed her shunt was leaking. Super strange because her incision from August had healed and at first the neurosurgeon in the ER thought I was up in the night but then his findings confirmed my story and suspicions. She was immediately admitted with surgery the following morning to remove her shunt and place an EVD (External Ventricular Drain) for a couple weeks until the infection cleared and a new shunt could be placed. Thankfully, Emylie pulled through each of these experiences and fought back to get to where she was before entering the hospital and soaring higher as she continues to beat the odds.

Living with wheels...

Yesterday we went for a walk to the elementary school. Emylie drove her power chair and upon arriving we needed to visit the restroom for one of the other kids. At first Emylie and I waited in the hallway because I could tell the entrance to the restroom was crowded with 2 garbage cans. Within a few minutes she wanted to go in and wash her hands. I figured we might as well give it a try. She maneuvered well getting into the bathroom and to my surprise there was not an accessible sink. We managed and made it work but looking to the future I see where my little girl is going to run into obstacles.
It is okay that the world is not made for wheels because most have legs but it still tugs at my heart.
On the way home we stopped by a good friends house...to get close to the front door Emylie had to drive on their lawn. As we were walking and I was trying to foresee how to get her to the door and realized the home had stairs approaching the front door and stairs up to the door.  My thoughts went to the majority of homes she will not be able to access.
When we took her trick-or-treating last year there were homes she couldn't even get close to the front door or be scene by the person answering the door because of stairs. What is life like for adults in wheelchairs, or even older children who are unable to be carried. I think of the day when Emylie is older and we go to family events at other family members homes. How will she participate if she cannot get into the home with her wheelchair. It is a huge blessing she has enough mobility to crawl around when she is off the vent. And for now she can be carried. For that I am incredibly grateful because I know that gives her a little more freedom.
I was so naive before Emylie was born. The more she desires her independence and uses her power chair, the more I see how many obstacles the world will present her. A couple examples:
* walking to the neighbors chicken coop... there are large irrigation pipes along the route. Legs can step over them, a barricade for wheels.
* going for a walk in the winter months... the neighbor who doesn't shovel the walk or the sidewalk outlet that is blocked by snow. Legs can walk in the snow. Wheels spin and get stuck or if the snow is too tall it is a barricade.
* a part B to the walk in the winter... you are going along the sidewalk and there is dog poop on the sidewalk. Legs can step over them. Depending on the size and placement the wheels may have to turn around and go a different route. Or if you didn't see it and roll right through it then you have to clean the wheels before going back into your house.
* there is a toy in your way... if your in a chair with wheels and cannot reach the floor you have to depend on others to clear the way for you. Legs can bend to pick it up the toy or legs can go around it.
Be grateful for your legs and all the things you are able to do without a second thought. Life is still joyful living with wheels but it can be challenging.