Our life from behind a camera lens

Years ago, I hired this photographer - I found her online and had never met her but knew thru simple Facebook messages back and forth, just how patient she was. 

We met one hot September day at University or Richmond to take pictures and she has been supporting, praying and loving our family from both behind her camera and with the most sincere open arms of comfort for years since. She has followed our family since the day before Annabelle was born, in fact, I went into labor with Annabelle the day I met Amber for those maternity pictures! I told her that afternoon that something just doesn't feel right, and she may want to prepare to take newborn pictures earlier than our planned November date. Annabelle was born the next day, September 20th, 2011!

The day Annabelle was discharged from the NICU and she finally came home from the hospital, Amber was there to congratulate us on our new baby and document the beginning of our journey with Annabelle Grace and as a family of 4!

Christmas was the time that we truly began to notice Annabelle wasn't well.. Something was very different with Annabelle and our initial pediatrician kept telling me to give her some slack because she was a preemie; not all babies are the same. He was right, but my motherly instincts were kicking into gear that something wasn't ok. Annabelle was a miserable baby. She cried all the time, she never slept soundly. She was always swollen, but without the explanation on the weight scale. This Christmas was the last I remember where I was allowed to believe our life would be ok. I remember having a gut feeling something wasn't right, but I didn't have anything to run with yet. 

"Blessed are those who see beautiful things in humble places, where others see nothing"

Winter ended, spring passed and summer began. Annabelle was almost ONE(!) but wasn't crawling, she could hardly sit. She wasn't communicating with us at all, she wasn't eating without violent reactions, she still was not sleeping thru the night. She cried all the time. She screamed when she ate. At this point we were seeing an allergist in addition to a GI and constant pediatrician visits.

"The trick is to enjoy life. Don't wish your days away, waiting for better ones to happen."

It's Christmas again, she is just learning how to walk.. Barely. She forgets how to do it often and crawls for days before returning to walking. We've taken her off Elecare because we cannot afford $3,200/month any longer. She's drinking rice milk and eating foods. This is the point in which Annabelle began to really get sick. 

"Worrying won't stop the bad stuff from happening, it just stops you from enjoying the good"

We spent every week at another doctors office from Christmas to March. We were either in a doctors, KidMed or an ER. Something was wrong, very wrong. This is the moment in which I began to fight. I seeked second opinions left and right, I switched pediatricians and found Dr. Young, our saving grace! Then finally I broke down hysterically crying and pleading for help at our GI's Office. A week later, Annabelle underwent anesthesia for the first time and we secured our first diagnosis of EoE. We thought we had it figured out.. I thought it was the worst thing in the world . . . . . ohhhhh little did I know. 

 Bubbles are our saving grace some days.. I always, always have containers of bubbles in our diaper bag that travels with us to every appointment and hospital visit.

We had such confidence that the decline in Annabelle's health was temporary and she would soon be ok.. the doctors were convinced the EoE was simply difficult to manage - My heart was telling me something very different, I switched all our specialists to a bigger hospital and began the uphill climb searching for help.

The summer has carried us to the point we are now; in search of a true diagnosis. It's almost Christmas time again!! The heartbreak to look back to a year ago when we setup a tree to now, isn't even fit for words.

Our family has struggled, fought, broken down with the heaviest of tears and unanswered questions, but also stayed up until the early hours of the morning talking, worrying, pondering, researching.. sometimes nights that we just don't go to sleep at all. While this year has been the hardest, heaviest and most difficult so far - everything important has remained the same. Both girls get undivided one-on-one time; sometimes I think that is more for me than them.. we always hold hands and say grace, we always say our prayers and recognize those that are less fortunate than we are and also ask God to help provide us with answers and a cure. Life raising an opinionated 4, sometimes going on 13yo little girl.. and an equally passionate and strong-willed 2yo isn't always easy. But it wasn't supossed to be. I didn't expect life to ever be easy.. with or without kids.. with or without illness.. but I do know one things, life with kids, with illness, no answers and lack of support in the medical community when your baby could be dying in your arms - THAT I didn't expect to be so hard - THAT I never ever, could have imagined would be my life. Sometimes the only comfort we can find in our days are those where we can control what's happening . . . so we hold hands, we say grace, we smile and giggle in the floor tickling the kids, we stay up well past midnight with fears, we watch our children peacefully sleeping and still somehow thank God that they are both with us, in their beds, warm, peaceful and tomorrow there is promise for a change. 

   

Amber has laughed with us thru fun times, but she has also followed us to the ugly of ugly during 2013's Journey. Life hasn't only been smiles and capturing our family having as much fun as we enjoy. 
A picture can tell a thousand words, and our smiles can be so deceiving .. .. behind the laughter and fun with our children, there are the tears and frustrations. There are the intimate moments of a family struggling. Amber has been able to turn those personal moments into a heartbreaking cherished story with her camera lens. Just as a happy family laughing in the grass can tell a story . . . . these pictures tell the other half of our story. 

 We always pray, I apologize repeatedly and wait for the moment we are all ready and prepared before starting another NG Tube placement. 

"God didn't promise us days without Pain, Laughter without sorrow, nor sun without rain. 

But he did promise Strength for the day, Comfort for the tears, and Light for the way."

I am crying adding these pictures... I feel my own pain behind an image - a pain that just NEVER EVER goes away!!!!!! I hate all of this :'(

"The pain you feel today, is the strength you feel tomorrow"

 "Hey little fighter, soon things will be brighter..." 

"Until you've lived my life, walked my path, suffered my pain and seen what I've seen. I could care less about your judgments"

"I love you for all that you are, 

all that you have been 

and all you're yet to be"

And this is our life. We strive each day to wake up with refined hope. We pray for the best quality of life for both our children, our family and our home. Our world is upside down, but it's our world. It isn't easy, welcomed and it's so painfully unfair and cruel - but it's the story we were dealt and it's ours. I never would have imagined that pictures would tell such a story but the words are never-ending behind some of our families images. There are so many dark times but there are more happy times and we are so very grateful to have our photographer Amber with us on our journey to help capture this journey we are on. 

The strength in our love for our children is deeper than any love I could have ever known. The support from our family and friends is larger than I could have ever imagined. Thank you all for continuing to walk with us down this winding path. Hug your loved ones so very tight, tell them every chance you can how much you love them and never ever for a moment doubt the blessings around you. 

Thank you Amber, for you never-ending love and constant cheerleading us on. You're an amazing woman, equally strong and so selfless. You're a blessing to our family and your gift to us is priceless. 

Love, Ashley