Having a child with exceptionalities can make you feel different. Eli's syndrome is so rare that there are no other children in our province with it and, as a social person, not having a community of people I could hang out with and talk to face to face about it made me feel isolated and just...different. There were times when I felt that I couldn't really relate to the other parents around me who talked about "regular" kid things, "regular" parenting woes. I did connect with amazing people through social media but I still couldn't shake the feeling of being different in my own skin. So, as any great list maker does, I sat down one day and made a list of how I was actually different and how I was actually still the same as any parent walking around out there.
What I realized with this list is that everyone is different and that these differences are what make life so beautiful (hello wonderful life lesson that I keep learning over and over!!!). Another thing this list showed me was that everyone is the same, having shared experiences that transcend a diagnosis or "regular" parenting woes.
Here is the list that I wrote on December 27th, 2014 (along with lists, I have a love for exact dates) with a few added thoughts from this moment in time in parenthesis because, well, I've learned some stuff over the past year and a bit!
I am different because...
- I am faced with a diagnosis of a syndrome that include words like "delays", "difficulties", "profound", "lack of", "issues with", "deficiencies", "deletions" and these scare me to pieces. What does it all mean? How will this affect Eli's life? (I have learned that these words are only what you make of them. I have a little bone to pick with medical journals when describing such syndromes but that will come later. It is up to Eli to be whomever he is going to be. He has to work harder at things but that does not mean that he is less than or that he is not going to have an amazing life. It is up to us as his parents to offer him every opportunity for him to become that person and to support him in any way that he may need)
- I have a number of appointments in my calendar each week at the Rehabilitation Centre at the Janeway Children's Hospital and a team of therapists that will be with Eli until he is an adult(This has become so everyday for me and I am SO THANKFUL we have been able to access these services. Physiotherapy, Occupational Therapy, Speech Pathology and Music Therapy have all given Eli tools to encourage movement, sounds, communication and socialization. I love meeting the families that are in there. I love the therapists. A perceived issue that ended up being a non-issue!).
- I worry everyday if my son will walk, talk, go to school (I don't really "worry" anymore but I do think about it all the time and that's okay. Eli will be who he is and I honour him just as he is. We work hard on his therapies and will figure out what he will need at any stage of life).
- I worry about how my son will live when Chris and I pass away (Okay. I still worry about this one. It drives me to start creating the services that he will need because they are not in place in our province. This is a work in progress!).
I am the same because...
- I am filled with a love that I never knew existed and am so blessed with my beautiful babies (Right? Every parent feels this heartbursting love and I am so thankful these kids are in my life).
- "Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body" - Elizabeth Stone. My children really are my heart walking around outside my body, making me vulnerable to any thing, small or big that may happen to them (The very first conversation I had with my best friend of life, Charlene, about Eli's diagnosis, I was in tears floating between the facts and the emotions. Char, who is a mother to 4 amazing kids, cried with me and asked me questions and then said something to the effect of "anything can happen at any given time to our kids and as parents we just have to be there and be vulnerable to it". I let that sit with me and don't think I have ever been more connected to this soul sister of mine. We each have our own journey as parents and we are all on the journey together. No matter about diagnosis or injury or many other situations that may come up, we are there for our kids).
- I am at my very best when I am just BEING with my kids - not in my head or the future. Their eyes looking into mine, their warm hands on my skin, breathing their breath into me any chance I get, their beautiful and uplifting smiles (Just...YES. We all stick our noses in our kid's faces as they sleep and breathe in their breath, right???).
- I am excited and sometimes fearful of the future...the unknown (I think this is straight up a human thing).
Writing this list taught me that we are all different and all the same. We have shared experiences and different paths and can support one another at any given time. It's lovely to be connected and it's okay to feel different. The differences really are beautiful and it's within that space that we can learn from each other and expand the lives we live.
I'm thankful you are sharing this experience with me.
Love and light,