Reilly Mackenzie H. turns 8 tomorrow. In some ways it seems like it was just yesterday that we were bringing her home from the hospital as first time parents, excited and anxious at the same time about having this new responsibility to love, cherish and nurture into her own little person. Little did we know that the dreams and aspirations we held for our first daughter would be ripped from not only our hands but more importantly from hers by her third birthday.
Diagnosed with Rett Syndrome at 3 years of age we officially knew at this time that Reilly would be dependent on us for the rest of her life for every single one of her needs, including being her voice. Talk about an incredible responsibility for us as her parents!
I can say unabashingly that the early days of Reilly’s life were hell on earth for us and her due to the neurological storm that was occurring within her brain and the affect it had on her behaviour and thus happiness. For days/weeks and months we often felt that we were on a little tug boat in the middle of the sea with a raging storm around us and no sign of land, help or relief from the natural elements of life. Of course it was during this time where we often heard from various people “I don’t know how you do it, God chose you for a reason, or I don’t think I could do it”. Of course we wanted to scream and lash out at these people and those that we came across that had older children with disabilities commenting that they wouldn’t have it any other way. We didn’t understand as we were in the middle of a dark period and at the time we didn’t know whether the sun would ever shine again or whether this blanket of darkness would be our new norm. I would also be lying to say that we never thought about wishing to turn back the clock and choosing not to have children given the grief and anguish Reilly was going through and our inability to provide relief. We didn’t think it was fair for a child to go through such physical and mental pain.
Over time as we bobbed in our little tug boat together, we were given little bits and pieces of relief and eventually the sun came out and we hit land that provided longer periods of stability for Reilly and thus us. Of course there are always going to be periods of struggle given what Rett Syndrome is all about but at this point in the journey I can now say that I am truly fortunate to be given this huge responsibility to love and care for a child like Reilly. I don’t believe we were chosen to have a special needs child but I do believe we had a choice in how we were going to embrace this situation and that we are doing a damn good job in giving her lots of love and also recognizing that she has just as many gifts to give us.
Given that it Reilly’s 8th birthday, here are 8 things that I absolutely cherish about her:
1) Almost every morning Reilly produces the most wonderful smile that can melt all the nighttime cobwebs
2) Reilly has the most infectious giggle that can turn anyone’s mood around even to the point of causing you to giggle yourself
3) Reilly’s ability to flirt with men. She even had a moment with a Hells Angel biker dude one day. Man she has talent.
4) Reilly was given such beautiful blue eyes that can get you lost in a trance by looking into them.
5) If there was ever a cuddling contest she would win it hands down
6) She loves food just like her mommy
7) Despite her limitations she still has the means to irritate her sister – very healthy!
8) Reilly’s ability to open our hearts and minds even wider and deeper than we ever thought was even possible.
Happy Birthday Reilly, we love you so much!