I have decided to tell the story of how we came to know about Floyds’ diagnosis. I now look back and I’m almost ashamed that I felt this way. This is not intended to offend anyone it is just how we felt at the very beginning and is the truth about our emotions, laid out in the raw.
What a beautiful little angel we have who is healthy and happy and the light of our lives.
It was so easy for us to pretend that the doctors may have been wrong, because for 5 months our little boy was just like any other baby, he giggled, he cried, he grew, he changed, he had doctors appointments and midwife checkups, he was not any different from any other baby. No one said anything to us until we went to them saying “he has a lot of rolls, do you think that is normal for a bubba of his age”?
The first tests came through the radiology department and these were full body X-rays. This frightened me so much because I didn’t want to know what these results could confirm. We were advised that this needed to be done and poor little Floydy had to be held down as they took X-rays, for every part on his whole body.
I kept saying “this is enough, no more,” but they needed them all. He cried and so did I. Then wait then began. At this point I was still convinced that they were wrong about it all.
There were a few things I did that didn’t help the process at all. I consulted Dr google. I typed in his symptoms and the remarks the doctor had made.
Large head, short legs and short arms. Well that was a mistake. Major mistake. When i saw the words words Achondroplasia (dwarfism) my heart sank, my body started shaking, my eyes welled up and I was in shock.
Floyd, having Achondroplasia, was not all I was worried about. A large part of the initial weight I felt was due to the medical complications that had been described in some cases. You see Dr Google notes every single possible complication that a child with Achondroplasia could have. Google research allowed me to reason with my limited knowledge of Floyds’ personal situation. The information I came across using this manner of research described health issues and complications that at this stage, I presumed, would affect every child diagnosed with Achondroplasia.
I didn’t know any one who had Dwarfism. This condition, I thought, was genetic and passed on through the family. I had no idea average height parents could give birth to a child with Achondroplasia. Questions flooded my thoughts, how did they not pick this up at birth, why me? and the always present, constant response to my reasoning self , No,no,no.. This can’t be true, its not in our family, it’s not possible.
The thoughts I had, took me to so many depths. What are the health complications, social issues, would he live the life I had envisioned for him?
While waiting for the tests each day and night seemed harder, I would wake to feed Floyd and my mind would sink back and run away with my thoughts, I was so scared.
Ross was the same, each time I fed him at night I would crawl back into bed so tired and weary and I would see Ross wide eyed and awake, he would cuddle me and my heart would sink and we would both just lay there for hours within our own thoughts, not speaking and absolutely heartbroken. We were both so sad for our little boy. We were scared for the future. We just didn’t know.
Our peadiatrician called me 4 days later at 6pm. I had been waiting for his call and was desperate to speak to him. He asked if I had heard of Achondroplasia. I remember falling to my knees, I couldn’t speak, I couldn’t cry, I couldn’t breathe.
At that point it was such a hard word to hear. I had a feeling by then that he possibly had Achondroplasia but I hoped with every inch of my being that this was not the case. I called my sister immediately and cried down the phone with tears flowing down my cheeks “he has it, he has it” and then I broke down. She immediately came over and she found me lying on the bed looking at Floyd and together we all just cried, in that moment, we were silent.
Ross was working such long hours before Christmas and we had spoken about it briefly but for some reason we both didn’t really talk about it too much. It was like if we spoke about it, it was true. Ross in particular was in a lot of denial about the whole process so we just pretended that it could not be true. I remember when I told him he didn’t really say a word, I knew he thought they were wrong and because it’s just so rare and even the paediatrician wasn’t sure, it was easy to ignore it.
That night was probably the worst night of our lives and it was of course sleepless like many before it. Full of silence, we were both so low that we couldn’t even comfort each other. I wanted Ross to tell me they were wrong, that everything was ok with our little boy, that we were going to be ok but he just couldn’t. Ross was a shadow of the man I knew. He was in deep thought and his devastation was so apparent that there was no consoling it.
We met the doctor on Friday afternoon. He sat us down and it felt like he was reading from a text book, he had never done this before. He ran through all the complications that someone with Achondroplasia could have. Telling us the worst possible complications as to not mislead us. He didn’t mention that many children with this are not affected health wise. After he ran through the ‘text book’ I asked him if he had seen this before and he said 20 years ago and then proceeded to tell us not to shoot the messenger if Floyd did not have Achondroplasia. What the… I thought. Why don’t they know. The next step was the Geneticist.
The lead up to seeing the geneticist was a pretty full on week.
There were two very memorable times during this whole process that I was at my absolute lowest point. The first was the day after we had consulted the pediatrician and he had confirmed his suspicions. Ross had a preplanned night booked with his dad and brother to have dinner. I had asked him to stay home with me but then I changed my mind and felt like he needed the time to talk with his family about what was happening.
He left at around 6pm and immediately I delved into the deepest depression that I had ever been in. I piled Floyd into the pram and walked, I didn’t stop, I called my sister and I was inconsolable. I remember yelling “Is this real”.. She grabbed her running shoes and ran straight out the door and met me on the path. When I saw her I immediately cried the most gut wrenching cry that I had ever released. I voiced every single fear, worry and utmost devastation to her, we walked and walked and we cried and cried together, we would look at Floyd every couple of minute’s and he would stare at us with his beautiful big eyes as if to know that there was something wrong, that his mummy was sad, that he knew to be calm and he just lay there as content as ever, like he was saying to me ‘I’m ok mum’.
The second low point was 2 days later, it was Monday morning and Ross had 5 days left of work before the Christmas break and was doing 15hr shifts. I woke up from another sleepless night and I was so tired, not just physically but emotionally.
There were not many people who knew about our situation but I had confided in a really good friend of mine, Kristy who also happens to be a close neighbor. She messaged me saying, ‘are you ok’. I immediately wrote back “I need you” she was at my house soon after. I walked down the stairs with Floyd in my arms, still in my pajama’s and was at my worst.
I remember putting him down, we sat on the couch and I sobbed in her arms, I cried for my little angel. I thought this is not fair, how has this happened. She just sat there and listened and together we cried.
The morning of our geneticist appointment was one that was full of anxiety. Ross had yet to shed a tear about what was happening, not because he wasn’t sad but because it was hard for him to let go. His brother came over to say hello and offer his support, and this is when Ross finally broke down. This was the first moment that he had really let go of his emotions. He was so scared as was I.
1 week later Ross and I found ourselves sitting in the geneticist office at the Royal Children’s hospital in Brisbane, tears streaming down my face. The geneticist had just told us, Floyd, our son, had Achondroplasia. He had ‘Dwarfism’.
To us, it felt very insensitive in the way the Drs disclosed this information to us. “Go home and have a great Christmas and New Year because your little boy is happy and healthy” they remarked. I remember thinking “are you serious”!?
You have just told us our 5 month old baby boy has a very rare condition that only 1-25,000 children are born with and your telling me to have a good Christmas!
I now reflect back to that day and think, what the Dr told us was right. Floyd is happy and healthy.
Floydy is a little boy who will have the most perfect life.
We’d just visited a whole hospital dedicated to children and I’m sure that each month the Drs in this hospital see hundreds of much loved children, some with life threatening illnesses. From our Drs perspective, Floyd and his condition, was a preferred diagnosis, in place of many others.
After we got past the initial shock of it all we started to put it into perspective. It was a very hard process but as soon as we released our video the healing began. We were excited for the future. We realised that everything will be ok, that Floyd-Henry is a blessing and a gift and we love him just the way he is.
The outpour of support from our family and friends was so amazing. The messages, the letters, the love, compassion and excitement for our future was our magic healing potion.
Finally we were smiling again and we couldn’t be happier with the beautiful little boy that we created.
I remember one lovely mum writing to me from America and she said that one day you will remember this time and won’t believe that you even shed a tear for your little Floyd-Henry. I don’t honestly feel this way just yet but we are well on our way.
Check out there incredible video