At the suggestion of a close family friend, I am going to start writing about my experiences raising our daughter Elle. Primarily so I have an outlet for my feelings, thoughts, emotions… but also with the hopes of shedding some light on the challenges we face in our pursuit of living a balanced happy life while raising our family, including our daughter with microcephaly and autism. I have no idea where this is going to take me, but I do know that I have a lot of emotions and conflict flooding my soul; I need an outlet. This is for me. I am not going to censor my writings. I am just going to write whatever comes up to the fore front of my mind. I do not have perfect grammar, I know.
Today marks an important day for us. 3pm we have the DDD (department of dev. disabilities) coming to do an in home assessment and inspection to determine what benefits if any Elle will receive. It is an odd feeling to know someone is coming to my home to EVALUATE our situation – not sure how to play it… So I think I will just not play it at all and just let it be what it is… real, complicated, stressful, joyful, overwhelming, exhausting, and never ending. That is how I pretty much feel about raising Elle after 16 years. She is essentially a toddler in a teenage girl body. Translation: sweet girl, requires constant attention, moody, wears pull ups, smelly, loves to cuddle, inconsistent communication, likes boys, goes #2 in her pull up about once a week and requires nightly enemas to prevent a shitty pull up in the morning, wanders, loves people and all animals. Not your typical 16 yo girl.
Not really sure how I have survived this long honestly. I think mostly because I don’t have a choice and my motto has always been sink or swim ? I always choose swim. But my best friend and husband of 23 years and I are reaching our maximum threshold of parenting fatigue. We are coming to a cross roads. Elle will be 16 yo this Fall. So many things to consider and overwhelmed by all of it. On the one hand Elle provides a serious love anchor and sense of purpose and on the other hand her condition has become an unbearably heavy and awkward weight that I no longer want to shoulder. I often wonder what it would be like to plan a vacation without having to strategize as if we are preparing for WW3. Who will stay with Elle, who can handle staying with Elle, what about the poop issue, will school be in session, should we hire some one to give the hired person a break from Elle. These are just some of the question we face. Needless to say, we rarely take a vacation.
I think one of the most difficult parts of being Elle’s mom is that I have often felt kind of alone and misunderstood. I imagine this is a common feeling of parents of special needs kids and I probably need to join a support group or something if I had time – not my first choice of a “free time activity” but probably worth while. I don’t know. But this is a real challenge for me. I wish it was different. I wish we had an inclusive community around us that would take an interest in who she is, that would get to know her and integrate her into their lives. However, reality tells me that people are busy and they all have their own battles. It’s just different for Tim and I, our challenge is 24/7. I do own the fact that I don’t openly share with others, that I try to protect others from the dark side… this is partly a learned behavior as well as just part of my personality I guess. It has just become easier to do it ourselves. On a positive note, I have found that a local non denominational church is practicing inclusivity and Elle loves going on Sundays to their kids program… They also have a great coffee bar and I can go and sit and listen to positive messages by myself for an hour. I think I need therapy. Obviously.
Today Elle is at Funshine day camp. She will be there for 5 hours. She will be surrounded by paid staff who love her up for who she is, interact with her, challenge her, and play with her. Not sure if all communities are as lucky as this one to have such a great program through Parks and Rec. I wish there were more opportunities for her like this one. I wish there were more opportunities for these kids in general – in spite of their disabilities, these kids do have so much to teach all of us “normal” people. But instead our society/culture does a pretty good job at keeping these kids in a corner and away from all the rest of us. It’s too bad – too bad for the parents because this mentality just adds to our isolation and exhaustion, too bad for these kids as they need the interaction and love and too bad for the “normal” people because they are missing out on the experience of seeing the world in an alternative way…