Something big has happened recently in our family. This thing is unimaginable, but beautiful. It has thoroughly rocked our world and left us questioning everything we thought we ever knew and believed in. We are ready to share it with you now.

----------------------------------------------------------------------------------------------------------

Have you ever been hugged by your doctor? I have. Chances are, if your doctor is hugging you, it’s probably not the best time in your life. In fact, it very well may be one of the worst times. Well, a few months ago, our doctor hugged me. The full embrace. A long, proper hug.

As I sat there, in the waiting room of our pediatrician’s office, holding her tiny, seemingly perfect, new body, it hit me. I just knew.

It’s happening again. I know it. I can’t breath. I can’t think. I can hardly move. I am so tired. How can it be happening again? I feel numb. I don’t think I can do it again. How could we have been so naive? I am so tired. What about Isaac? Oh, my poor Isaac. Have we ruined his life? What will we tell people? I feel like they’ll be mad at us. I’m mad at us. Fuck, I’m so tired.

“Ada….  Ada Bell? “

------------------------------------------------------------------------------------------------------------

Any one who knows us at all, knows exactly where I’m going with this, so I’ll just come out and say it.

It appears that Ada is suffering from some degree of the same mysterious syndrome as her sister, Emma.

During a recent family reunion we were surprised by how many people didn’t know. We watched them discover it first hand, but no one really wanted to ask. That made it very awkward for us, and probably for them too. You know, the whole “elephant in the room” thing. We've felt it during encounters around town, at the park and grocery store. Everyone is wondering, but they don't know how to bring it up. Nor do we. So, I decided it’s time to just get it out there and tell all of you what’s really going on.

As you know, Emma, our almost 5 year old, is disabled, quite severely. We still don’t know why. We have seen 6 different neurologists, 5 geneticists, and countless other doctors and specialists. She has a novel sized book of medical records, full of blood work and tests.  She has had 3 MRI’s of her brain, EKG’s, EEG’s, ERG’s, an ABR, a spinal tap, a full microarray analysis and . You name it. She’s had it and it all comes back normal. Our new neurologist, here in Utah, said that Emma has had the most impressive workup he has ever seen for a 4 year old. We still have no answers.  The current diagnosis is cerebral palsy of unknown origins. It’s just a label, a fall back diagnosis for the insurance company, so that we can get equipment and therapy, etc. We now know that Emma’s (and Ada’s) disorder is hereditary. A simple flaw of nature, with devastating results. 

When Emma was born, she had hip dysplasia. That was really the only thing that gave us any indication that something was different about her. When Isaac arrived, his hips were inspected thoroughly. They were fine and for me that was a huge sign that he was ok. When Ada was born, we held our breath while her hips were checked. They were also fine. We were so relieved. Then, around 3 or 4 weeks old, she became extremely irritable. The most notable thing was her cry. It was very distinct, a high-pitched squeal. It was Emma’s cry and we knew it, but we were still holding on to the fact that her hips were ok. She was also eating well and gaining weight, all things that Emma had struggled with from the beginning. Then, sometime between 6 and 12 weeks it became undeniable. Ada was indeed following the same path as her sister. However, we feel that she has a less severe version of this mystery disorder. She had a barium swallow study done 3 months ago and it came back normal. Emma has always shown some aspiration during her swallow studies. We think this is a good sign that Ada may have more control over her muscles.

She is still eating by mouth and for now, shows no signs that she will need a feeding tube. She has started PT, OT and vision therapy. She is beginning to gain more independence and become less irritable. Unfortunately, Adas hips have since become displaced due to her high muscle tone. She will be having surgery to correct this at the end of the summer and will spend at least 12 weeks in a spica cast.

The past 9 months have been a whirlwind. It has been a tumultuous blend of new baby bliss and PTSD. We've all had to adjust to our new normal with a very high needs baby. Our family has been tested to the core. Emma and Isaac have endured a level of stress that is simply unfair. We have held onto one another closely and found comfort in being together, with just the five of us. We will continue to get out and explore as often as possible, because that’s what feels good and gives us the sense of normalcy that we crave. 

The state of personal crisis can be a very selfish place. There have been times that our heavy hearts have caused us to forget that anyone else exists. We have many neglected relationships and for that we have to apologize. To all of our wonderful family and friends, thank you, for your support, patience, and understanding. Please bear with us for a little longer, as we slowly creep out of survival mode.

For those of you who want to shake us and say “WHAT THE HELL WERE YOU THINKING?” I totally get it. We have asked ourselves that same question several times.  The only answer we can come up with is that we simply wanted to add to our beautiful, young family. We thoroughly enjoy parenting and I think we’re really good at it. Isaac gave us a glimpse into something remarkable. It was easy and fun and that was enough to push us toward the decision to try for another. There was no way we could’ve known. We didn’t go into this blindly, but maybe we didn’t properly weigh the risks and consequences. Truth be told, I don’t know what it was that gave us the confidence to decide to get pregnant again and it doesn’t really matter now.  Ada is here. She exists and I refuse to regret my child’s existence.

Ada has striking blue eyes, just like her sister. She has bright blonde hair and golden skin, like her brother. She is sweet and smiley and snuggly. She enjoys being outside and being naked, preferably at the same time.  We’re determined to make her an avid camper. She loves music and water and shiny things. She is our beautiful baby and we will love her for exactly who she is, truly and completely.