After 9 long months of waiting, and as a patient with hypermobility, it was 9 months full of joy, excitement, love, but also risks, fears, what ifs, adjustments, and quick thinking (that could be a blog installment all of its own!) But the journey aside, the day arrives, a baby is born, your baby is born… but in that same moment, a mother is born… a concept that was only ever that, until that exact moment of giving birth.
I was diagnosed at 8 with Ehlers-Danlos Syndrome (EDS), which later in time had a cross-over diagnosis of Osteogenesis Imperfecta (OI), and it wouldn’t be until I was 25, that my genetic marker would be found diagnosing me with Loeys-Dietz Syndrome. Although yes, by definition I was misdiagnosed, for me, my diagnosis journey, was just right. Rather than being diagnosed as a mystery, or “nothing wrong with me” I was managed under a multidisciplinary, world-class genetic, connective tissue dysplasia team. This team recognised my needs and were able to provide to me, comprehensive and effective medical management. By no means am I saying everything was perfect because I didn’t fit exactly into EDS or OI, there were still unexplainable concepts, immune issues, heart-related complications etc. This brought with it, its own hurdles and trials, but I am aware, that my journey has lead me here; knowing that I had a diagnosis, an explanation for why I was different, and more importantly a management plan that allowed me to adjust to life and deal with what my body wanted to throw at me next.
This is only scratching the surface of my history. There are so many more details of my past which I’m sure I will share as the posts go on, primarily of which is related to the incredible resilience and advocacy work of my own mother. She never gave up on the purpose of fighting, dedicating all her energies into providing more for me, for my life and for my future. Teaching me not to be limited by something I had no control over, and making my heart and soul believe anything my heart desired I could do! (if it meant adjustments along the way, anything is possible!)
It is important to note that I walked into my adult life, motherhood and having children with my eyes wide open. I knew the risks of passing on my condition. I knew intimately the life I had led and that it could be the fate of my child. I had professional and medical knowledge and background behind me.
I met a fellow parent of a hypermobile child, and we found ourselves chatting and she shared with me: “I wish I knew, I wish I had known what I was stepping into.” When I asked how they felt it would have eased their journey, she shared that she feels she may not have been quite as fearful and that she would not have had quite so many nights where she had cried herself to sleep. We spoke for a little longer, and we shared our journeys and allowed some of the tough stuff to be heard by one another. I left that day really thinking and breaking down what we had discussed.
This woman had reconfirmed that I am still and will always continue to be, eternally grateful for the journey I’ve had with such medical support, but I also left our emotional conversation feeling torn. Yes, we were different; yes she was accentuating those factors leading up to our motherhood that made us different, but I did not feel different to her.
My fears often consume me. My sleepless nights and nights of crying myself to sleep, considering the future or how to best help my daughter: are no less than what she had discussed.
As ‘prepared’ as I thought I was, that first night, after all the guests and visitors had left, and I was gazing at this perfect little life in my arms, not only was my heart bursting into a thousand expanding versions of love, but so too was this new pocket I had never felt before: the worry of a parent. This perfect little breathing life 100% dependent on me… could I do this?
Many of my fears were laced with so many specific connective tissue disorder (CTD) based issues: “What if I hurt her wrapping her? What if she has sleep apnoea? (CTD kids can be at a higher risk of soft tissue collapse.) What if I (as a CTD patient) drop her? What if I dislocate and fall while carrying her? What if the doctor who sees her doesn’t know enough about CTD’s and misses something?”
But I had to remind myself that if you take out the CTD-specific content we are left with a regular kind of ‘new mother’ worry: “What if I wrap her wrong? Have I done enough to monitor and prevent SIDS; what if I drop her? What if someone else drops her? What if I can’t be there when she needs me? What if the doctors miss something? That doctor doesn’t look like they’re old enough to be out of high school!….
For us as mothers, as parents of these amazing hypermobile children, feeling sometimes like we have the weight of the world on our shoulders: You are not alone. We, all mothers, we understand. Although yes, there will always be components of our journey that make us different; for me and the fellow mother I had chatted to, it was that I had pre-knowledge and she did not, but we both still loved, and feared, and smiled and cried. Me in one hospital room, and a non-hypermobile woman and her family in the room next door, both gazed at our newly formed life in our arms and fell deeply into ‘motherhood’. Motherhood is something that unites us.
Sometimes, what we think it is that separates our experiences, actually has flavours that unite us. Sharing our stories is such a unique tool to break down walls of isolation. So if you are reading this and you have connected to this, whether we have a lot in common, or not at all; to you I say, I understand you, I applaud you for your strength, and I know you are doing an incredible job, every day.
Hi! I am Renee, at 31 years young I am extroverted, inquisitive, adventurous and passionate by nature. I was diagnosed at 8 into the connective tissue dysplasia family and have had plenty of ups and downs along the way. Graduating with a degree in medical radiation science, I am a Radiation Therapist by day, a fun loving cake creator by night, and for 12 years have volunteered in various roles with ConnecTeD Foundation. I fell in love, and we have two sensationally, life-changing daughters together; we are a family affected by Loeys-Dietz Syndrome. My eldest daughter and I have Loeys-Dietz, and I have 2 unique journeys: one as a patient, and one as a mother. Individually and as a family, we navigate our way through the roller coaster and adventure of life. I look forward to sharing parts of my journey with you, and hopefully learn from yours too!