Belonging following a journey to a Diagnosis
Miles being silly with mama | Dress is Anrabess | Bag | Hat |
So, if you have followed along here you may already know that I have two boys. My oldest, Parker, age 4 and my youngest Miles, age 3. We went through a great deal of loss and difficulty on our journey to parenthood, however, we would do it all over again to receive these two blessings. Our first son came without any issues, if anything pregnancy and labor were both pretty uneventful and went extremely well. We knew we wanted more children and Miles was a wonderful surprise that we hoped for, and it truly changed our world.
Again, pregnancy and birth with Miles was relatively uneventful and it was natural, however, now looking back I can see signs that some things were different. He was very quiet, tired easily and took a long time to nurse, often falling asleep during the process. We had an outstanding hospital team and care at Tampa General Hospital and we would return to the same team if we ever choose to expand our family. After being released from the hospital, Miles lost weight rapidly even as I nursed him constantly and pumped to keep my milk in plentiful supply. I remember one night hysterically crying because he was up every 30 minutes. My parents stepped in and did feeding shifts to help me because I was on the verge of a nervous breakdown, sleep deprived and hormonally imbalanced. Miles gained weight and seemed to do fairly well, considering, which now makes sense after receiving a diagnosis because most infants with his syndrome are labeled failure to thrive and use feeding tubes. After three months, I knew something may be different and my Pediatrician agreed.
Scroll through the stages of progress.
Both my husband and I took leaves from our professions to care for Miles and get him all the necessary therapies, testing, and care that is needed for a child labeled with Hypotonia and Developmental Delay. With the help of our therapy team, my Psychiatrist (someone who was the catalyst in my success to have my boys) and his healthcare team we were making AMAZING progress. Miles was average in fine motor, nearly average for gross motor and his receptive language was excellent. The main concern being his expressive language, as he has quite the personality and absolutely has a lot to say, however, it did not come out in words. We are in the process of learning ASL and we currently still attend Speech Therapy where they are using a device that allows him to find the words for his thoughts. I was so proud of his progress, but in the same breath, I couldn't understand why he wasn't speaking verbally when he understands everything.
This is where I knew I had to continue to work with our Geneticist to push for more testing. After so many tests continued to come back negative, we thought that maybe he just needed time, and my husband thought it may be time to stop testing. I get it, who would want to continue to poke your toddler, who already has sensory issues to travel down another dead end? On the flip side, I just knew this dynamic team of Dr. Sanchez and Deanna would lead us to an answer. They understood me, listened and directed us so well. I am forever grateful. So, on our final cheek swab (yes-a cheek swab) we found our answer and when they called for our virtual meeting, this time I knew that it was going to be "the answer." Call it mother's intuition, or perhaps a tired mama desperate for answers, but I just knew and I wasn't sure if I could handle anymore.
So, it was the day before we had students- at a new school for all three of us, and I asked Dustin if he could take the virtual call and deliver the news to me in private. Dustin is the MOST incredible human and I am so grateful he is MY husband and best friend. His love unconditional, his strength unmatched, and ability to put things into perspective is a true gift. I struggle with anxiety, so he knows how to deliver difficult news to me. As I came home, I met my husband at the dining room table with a notepad and laptop, still chatting with our dynamic team and he asked me to sit down on his lap. I did. His eyes a bit red. I knew. He held me tight and said Miles has an EXTREMELY rare neurological disease Jordan's Syndrome, and he is going to continue to defy all the odds. It's only described in 20 individuals in medical literature. It is a spectrum and Miles is mild, and thriving. We can do this, together.
All I can remember is the room turning black, the pit in my stomach was worse than ever and I felt sick beyond belief. I screamed and cried. The doctors saw me, and waited. Then I replied with, "Will it shorten his life?" Dustin said,"It may, but we will make it long and when you're ready there is a group Jordan's Angels (families) who are brining awareness and may be on the verge of a cure!" He continued with..."I know that this will take you some time, but he is still the same Miles, who you love beyond belief!" I ran to his room and held him tightly, looked into his eyes and felt the love I needed at that moment. The love that will never change and only grow stronger with each passing year.
Moving forward, the next day I cried most of the day, performed my job and went home. I went on Instagram to look for other families with children with Jordan's Syndrome, and in luck I found Michelle. She was the angel that saved me. She gave me support, love and encouragement. She was the bridge I needed to prevail. Her optimism, strength and positivity gave me hope for the future, for my baby. Her daughter Hailey is just so beautiful, resilient and strong. I know she, too, will do all the things in life. You can see more about both of them and their family on @mamabearforrare. I joined the Jordan's Angels and she included me in on a mom's group of JS mamas who have wine nights and an open line of communication for all things JS! We belonged. Miles belongs and we have a support system. A family that understands and wants the best for their child, as well. A group of people doing anything and everything in their power to support awareness and the journey to a cure. We are so darn close y'all, I can taste the victory champagne.
And now we are nearly two months following a diagnosis, and I feel so optimistic and strong. I am proud of our family for advocating for Miles. I am lucky to have all of the help and the incredible group of professionals that I do to support us. WE are the lucky ones. Miles has changed our family forever, for the BETTER! He has taught us to smile and laugh more, take risks, and to live life to the fullest. We have empathy for others and Parker is learning how to love all humans equally. We are united with love and understanding. Miles has taught us about disability and inclusion. Miles spreads so much love everywhere he goes with his air kisses and giant hugs. Our lives are so much better with our #mightymiles in it! This world is so much better with him here. We are all the lucky ones.
Please contact me if you're in the area and need any of these specialist's numbers. They are truly the very BEST. I'd love to help.