In the last year a few friends have lost children. Children they adored. All with special needs. Several months ago I was talking to the most recent.
This mother lost a little girl I watched grow, learn and most importantly live a full life despite what some call limitations. This was a girl I'd never met in person but nonetheless had wedged herself deep in my heart. A girl who I will always cry about. A girl who my family knows by name. Who I bragged about to my mom in our daily conversations. Who in some of my darkest days made me smile with her beautiful laugh. She leaves behind two parents who adore her. Brothers but not just any brothers they are her womb mates. She is a triplet. She has a new baby brother she didn’t get to meet. Grandparents, aunts, uncles and whole bunch more who are grieving for her.
So this hits multiple triggers for me. A child's death. The loss of a multiple. The loss of a child with special needs. A child I love.
I told my friend this when we spoke.
"I can only imagine. I know what I feel like losing Natalia. Losing any child is hard. I can't imagine losing Aaliyah who I care for so much more than your typical kid. We invest even more than most can imagine for them. ***** knew a love from all of you and that leaves a hole."
Day in, day out my time and what I do is spent around Aaliyah her needs, her wants, her appointments etc. My medical needs are often left until I can't handle it on my own because who will be able to take care or her and keep Melody occupied while I am being cared for.
"When we have children like them, your world changes. Most parents expect their child to eventually leave the nest. We adapt our perception of what parenthood truly is for us. We learn an empathy we didn't know possible. We grow a strength we didn't know we would be capable of. Why because that child needs us like no one ever will. They teach you to see love in different packages. To know that yes the words I love you are special but words or gestures aren't the only way you see it. You see it in the sparkle of their eyes. In how you know the tone and pitch of their cries when no one else does. You learn a new way of being. We speak for our children and will always."
Our lives completely revolve around our kids in ways most can't understand. So losing them is crippling in more than one way. I truly can't explain what Aaliyah is to me, obviously she is my daughter, a piece of my heart, a connection to Natalia but there is more. She is more than just my child. My responsibility. My "job" is organizing her therapies, her doctor visits, her procedures, being with her during hospital stays etc. We form a bond that I can't describe.
We the parents to special little kids are often told how strong we are. What choice do we have? We are often told I couldn't do what you do. We probably would have said the same thing before we had to. We are often told how special we are. Really? Special? What's is so special about us?
What you need to realize is those questions don't help us. If anything they probably piss us off or irritate us to no end. Which depends on how are day went.
We live with the knowledge that we more than likely will outlive our children. It is something that never ever goes away. It's always there, in the hidden corners of our minds. A never ending weight. The thing is it's one we don't want to let go of because if it goes away it more than likely means our precious child is gone.
From January of last year to now we’ve had several real scares with Aaliyah. Two in particular I watched my child who I adore, struggle to breath. Last week I watched as we sat her up to be examined stop breathing. In less than a 30seconds she started to go blue. Eventually we found the cause and she’s doing better. She’s home, shoot she’s back at school. Yes I stayed calm. Yes I knew she’d get better. Regardless of feeling that way and thinking that way, in the hidden corner of my mind I had that fear. I will always have it.
I finish this with one request pray for my friends who all are grieving.
