Spina Beautiful Video for newly diagnosed families

The day we found out that Ruger had Spina Bifida was one of the hardest days of my life. I will never forget all the details of that day. My heart was broken into a million pieces. I couldn’t function. Nick and I researched as much as we could that night which is a horrible idea. I remembered seeing a little boy in a bumbo wheelchair on my FB feed. We got in touch with his parents and went and met him the next day. That is also a day I will never forget. I remember how sick to my stomach I was before we walked into their house and I remember how comforted I felt walking out. It made such a difference to meet someone with Spina Bifida. See it in real life and not have my imagination of what all the textbooks say. We were lucky enough to get together with some families that all have children with Spina Bifida and make this video to help newly diagnosed families.  It may not be the life that we had planned but it’s the perfectly imperfect life for us ❤️ #SpinaBifida #SpinaBifidaAwareness #SpinaBeautiful #iLoveSomeoneWithSpinaBifida #SpinaBifidaStrong #SpinaBifidaBaby #SpinaBifidaWarrior #PerfectlyImperfect  Please feel free to share to further spread Spina Bifida awareness ❤️ https://m.youtube.com/watch?v=z2e2dNvfZpc&feature=share 

3rd Anniversary

Written by Ashlie:

     Three years ago today I had one of the hardest days of my life. I was going in for a routine ultrasound. We already knew we were having a boy. We were going to be able to see him again and we were all excited!! Charlie was yapping away like she always does. We were watching some cartoons on the waiting room tv. They called us back. Got me all set up, put the gel all over my belly and started looking at our little boy....... Nick realized it first. He noticed how the nurse was acting and the questions she was asking. I was just looking at the screen watching my baby boy. I remember him asking the nurse something along of the lines of “what are you seeing?” I never thought anything would be wrong. Next words I heard, turned my life upside down. “Spina Bifida”.... my heart sank, I could feel the pit in my stomach growing. My whole chest was sinking. There are no words that could truly describe everything I was feeling. All I could think at first was this nurse has no idea what she's talking about. Not my son. Get the doctor in here. Moments later, the doctor came in and confirmed what the nurse had told us. I was in shock. I had no idea what to say or do. My mom and Reed came and got Charlie. Nick and I took a drive to try and process everything. I think we both wanted to run away. I remember driving in silence. I kept shaking my head. Thinking there is no way this is happening to us. That day will be a day that I will never forget. You feel helpless. You feel like you just lost control of your whole life. You never think it will be you. I was angry. I was sad. I kept wondering what I did wrong. How can I fix this? I never want to feel how I felt that day again. It’s hard to stay strong but staying strong is really the only choice you have. It was hard to constantly put on a smile and not break down. 

     There are days that I have “I hate Spina Bifida” moments. There are days that I get down on things that Ruger will have to do that others won’t ever even think twice about. There are also days that I get to celebrate something that seems so little but it so big for a tough guy. I’ve learned so much on our short journey with Spina Bifida. We were able to take in Corbin and help him the best we could while he was here with us. That little boy taught me so much about life and continues to do so even though he is not physically here anymore. I was able to build a relationship with Corbin’s family who is now our family. I was able to see all the good that there is in our world. I know that we have many people in our lives who will always be there for us. Who will help us stay strong and positive. I learned a love a never knew before. We will all have our tough days in life. The important thing is how you handle those tough days. How you react to them. How you let them affect you. Take every trail as a learning experience. Grow from it. Learn from it. Come out a better and stronger person than you were before. We have met some amazing people along the way on our Spina Bifida journey. It makes my heart happy to know that we have the support that we do. I love celebrating all of Rugers first with all of you that have followed our journey so far. I get excited when he does something amazing and I get to share it with you all. It’s not all butterflies and rainbows over here, we have our bad days but we like to focus on the good ones. On the happy ones. Now I look back on that day and think If I would have never experienced that day, I would have never met Corbin and been blessed with all that he taught me. I am such a firm believer that everything in our lives happen for a reason. 

    This whole spina bifida journey has been a crazy one. I wish I could go back to that day and show myself what life is really like. Spina bifida is not a death sentence. You cannot look at Ruger without smiling. There is no way to explain what an amazing, sweet little spirit he is. You just feel it the minute you hold him and he gives you a snuggle. He is the most amazing, happy, sweet little boy you will ever meet. He makes your heart melt. I can't imagine our family without this perfect little boy in it. He continues to impress us every day. He’s had a walker (swoop) for a little over a year now. He can get pretty much anywhere and everywhere with Swoop. He continues to take steps here and there. He talks none stop. He is into everything!! It amazes me how quick that kid can get around and destroy a room in a matter of minutes. He is your typical two year old. He can do everything by himself. #IDoIt is his favorite phrase right now. He has a happy life. He has quality of life. He will continue to prove all the doctors wrong

Obituary for Corbin

Our sweet little Corbin is now running, playing, laughing, and accomplishing everything that he could not do here on earth. Before he passed, he made sure to keep fighting until he saw his mommy in Colorado. Corbin leaves us at just 16 months old, but his spirit will remain with us for all time.

Corbin faced many neurological and respiratory complications, caused by Spina Bifida, Chiari II, and Cerebral Palsy. His sole purpose in this world was to help others, without ever being able to do anything for himself. This precious little boy brought hope, trust, compassion, patience, understanding, and most importantly love to all that were blessed enough to know him.

At 12 months old, his mother made the ultimate sacrifice. Allowing another family to come into his life, in hopes of better medical care and quality of life. Both families will forever cherish this special bond that was formed. Corbin’s love extends to Nick, Ashlie, Charlie, and Ruger Smith. Along with a huge extended family that instantly took him in as their own.

Corbin is survived by his loving parents, Angela Kristen Merlino-Budge and Jacob Merlino, his siblings Vincenzo Salazar and Madison Budge.  He peacefully left on his terms, just two days after smiling and laughing in their arms for the last time.

A memorial will be held Friday evening for close friends and family.

Corbin Joshua Budge 4/12/2015 - 8/24/2016

Corbin Joshua Budge
4/12/2015 - 8/24/2016

This morning Angela, Jacob, Ashlie, and I lost our sweet little boy. He is no longer suffering, and has returned to heaven where he can now run, play, and laugh like a little boy should.

Corbin came to this earth to strengthen others. He helped form relationships, trust, love, and understanding. He was pure and innocent, yet trapped in his own mind so that others could grow. He fought long enough and hard enough to go see his family this weekend for the last time. It was comforting to know he went peacefully on his own terms in our home.

I was lucky enough to be part of his life, to learn from him, and to be a better person because of him. I am grateful for his mother for letting us into her life.

We will have a memorial on Friday night for family to celebrate Corbin's precious life.

Update on Corbin

Just a quick update on Corbin:

He ended up in intensive care due to bronchiolitis and two other common cold viruses. Corbin is only able to breathe in through his nose. Imagine when you get sick with a stuffy nose and feel like you can't breathe, he really couldn't.

He has was moved out of the ICU and over to the infant unit. While the respiratory issues are clearing up with each day, and probably could go home... They want to keep him until Saturday to get more of a grasp on his other complications. So while this week has been crazy; running from the hospital to work, home, then back to the hospital, it's actually been filled with good. Every specialist at PCH has been very invested in his future

Corbin

Corbin has already started to show a lot of progress he is grabbing and holding onto things, bringing them to his face, he got his first tooth, and he is overall a happy baby!

We started the day with some exciting news, the courts in Colorado officially signed the legal guardianship! We took him home with only a power of attorney. This was a big step and something I had been working on for 3+ months.

We ended the day with a little set back, and in the ICU, and will be here for at least 4 to 5 days. Corbin ended up getting a pretty common virus, and due to his other complications, it has made it very difficult for him to even breathe.

Here is the bright side: we have had many appointments that we're getting scheduled over the next 3 weeks. Since we are here, I can get many of the specialists to see him Monday. This is great because we can begin to get a lot of questions answered about his future, we can adjust his diet, and eliminate some medicine that he should not be on.

Ashlie was very much on the ball with getting him to his pediatrician. It's a good thing as he sent her right up to the ER.

I wanted to thank everyone for so many kind supportive words and helping us with the little day to day things that we take for granted. We really are blessed to be able to take this beautiful little boy into our home. He will get stronger every day and impress everyone, just like Ruger.

#CorbinJosh #PrimaryChildrensRocks

Picking up Corbin

Been on the move all day to get this little guy home! Unfortunately we were 17 mins late getting our bags checked. So we will be home later tonight.

Corbin just turned 1 about 2 weeks ago. He has Spina Bifida with Chiari malformation, shunted, and a g-tube. He is going to have a lot of up hill battles, and we get to be by his side. We can't wait to see all the progress he makes. #SpinaBifida #CorbinJoshua #Chiari