2014 let's live - 2015 let's FIGHT

I don't believe in New Year's resolutions. Our family typically doesn't celebrate or put forth much energy into New Years beyond food.. bc again, most all celebrations in our family revolve around food. It's a never-ending battle and tradition that won't break. We don't give into the 'this year I will not curse, or I will lose x amount of weight..' Our goals are constantly revolving, life is always changing. But turning a calendar over into a new year, sure brings light into how the last year felt and what you see for the future...



Last year, our New Years was spent in MCV emergency room with Annabelle fighting everything she had. It was the first time her little body gave away from not being fed. The threshold was just shy of 5hrs without food and she was losing consciousness and stats were haywire. Doctors had told me how dangerous it would be to Annabelle's little system if she went a duration without being fed, her ammonia levels would spike and we would start to lose our little girl. That fear fed the energy and fight I gave to MCV that night, the reality of the dangers then began to show themselves... I pleaded the staff to let me feed my little girl and they continued to deny my request and insisted she needed further xrays before I could feed her again. I continued to fight and had our doctor call the hospital to explain the situation - by the time the phone call was made, it was too late - Annabelle was spiraling out of control and FINALLY caught the attention of the right doctors she needed. They read her labwork and working diagnosis and that's when the team recognized the danger our Annabelle was in... we spent the next week in the hospital because of that New Years night. She was so sick, she was in so much pain..

 

Our nurse had just started working for us. We spent months upon months interviewing and trying to find the right fit for our family and someone that we trusted with Annabelle. An angel in disguise was sent to our home last year. Annabelle fell in love with her immediately and I was so grateful for the bond they were building. New Years Eve I believe was the long day, into the late night that made the two of them inseparable. Annabelle was in such terrible pain, I was frightened and mad, in the middle of the chaos of an ER on NYE, our nurse was everything our family needed to keep the pieces together. A year later, we couldn't live without her. I owe all of Annabelle's progress to Mrs. Pat over this past year.

2013 was horrible to our family. We lived most days in fear and hating the past, present and future. We were a bitter, exhausted, frazzled and angry family. At the strike of midnight, alone in a hospital room with the machines surrounding my daughter beeping, my other daughter and husband 45min away, I looked over the Richmond skyline feeling guilty. What if the unthinkable happens to Annabelle? What if she begins to lose the fight she's dealt with in this life? What memories of my daughter and family will bring a smile to my face when I reflect back? There were very little. I sat in that hospital room alone all night and never fell asleep, I prayed to my daughter and promised that I would make the most of 2014. I promised that I would slow down and begin seeing life for what it was, despite the cards we were dealt and I would put our fight for answers on the back burner to enjoying life.



AK and I had to mourn and bury the idea of who we always believed our daughter would be and how our family would grow to become. When we began to learn our daughter would not be a healthy thriving little girl just as Mady and most others, we were devastated. We fought for 'normalcy', we were broken every time we had to surrender more and more of that energy to making our family 'normal'. Every holiday and life event was opportunity to remind us again that our Annabelle was unique to our family. It hurt. It's painful to admit but it hurt all of us. I promised Annabelle and our family that from 2014-on, we would stop hurting and caring about how the rest of the world moved and we would only focus on our little family and live each day to the fullest with one another.
We've done just that.

We've taken daring steps since making that decision, sometimes reckless but ultimately for Annabelle and ensuring the smiles on all our faces. Should she go to birthday parties with a compromised immune system? Heck with it! Let's go! Well wash our hands a lot while we're there. Rest plenty during the party.. And even days when she isn't able to enjoy any of the event, she still gets to be outside and see other kids and interact however she's comfortable. 

A train ride away from our homes security and all our medical supply? Pack your bags, we're going to see our nations Capitol and the Zoo. 

 And even enjoyed some baseball games..

Many things we still cannot attempt as a family. Many, many events we do miss because of Annabelle's condition, but in every decision our priority remains = "what makes us happy.. Within reason and safety, what makes our family feel more alive than any ever.."

I prayed with everything that 2014 would bring us an answer and diagnosis for Annabelle. I prayed harder though, for a remarkable quality of life for our daughter and I believe that is what God has blessed us with. He's directed us towards a brighter path of hope for the future, he's protected us during the times we decided to live on the wild side, God has sent an Angel and her family directly from heaven as Annabelle's nurse, we're been blessed with a new home and incredible neighbors, but most of all, God has given us another year to meet some of the most humble, caring and faithful people that we would have never had the opportunity to meet otherwise. Annabelle's love and contagious energy has won the hearts of so many and our family could never be more thankful for the blessing to call each of you our family in this world of 'non-normal' were living in. 

Goal for 2014 was to live

Goal for 2015 is to fight

We now know how to live, breathe, laugh and even cry without judgement. This year, we plan to put our Viking helmet back on and fight. We spent very little energy fighting for answers this year. Most our focus was living and quality of life. It's time now to fight again and get answers and help for Annabelle finally. 2015 is guaranteed to be a challenge, heartbreaking and for certain a lot of frustrating closed doors, but we are ready. Annabelle is ready. It's time. We need help. We need answers. We need a damn diagnosis for this kid! Bring it on 2015!