The days, weeks, months and years go by and this world of special needs does not get any easier. When you have a typical child the child grows and learns but it get’s easier, they become independent they continue to learn and you slowly start to let go. A typical child understands and can communicate, they can make their preferences very clear. When you have a child with special needs the progress is slow if any. You take one step forward and five steps back. It can be heart breaking, exhausting and sometimes you find yourself in a place without hope. You find yourself falling into bouts of sadness, or comparing your child to children around him/her. It’s hard, it’s scary and you wonder how you will get through yet another day.
I have a child with special needs. She is an amazing child with a beautiful spirit and makes me smile with my heart. When she meets a new milestone or I get that little glimmer of light that shines through her in a moment of clarity where I can see who she really is with out all the struggles it really is a beautiful place. But I am not always there. As she get’s older her delays are more apparent, they hurt more. It gets harder.
When I look at her I wonder about so many things. I wonder what she would sound like if she had a normal cry or how she would sound if she could only say “mama”. I wonder what her favorite food would be if she could only eat. I wonder what her hair would look like if she was healthy and did not have microcephaly if it was not thin and didn’t fall out so easily. I wonder how peaceful her breathing would sound if she did not struggle to breath and did not cough constantly. Would she like to play with dolls or be a tom boy. Would she love shoes or like to play dress up like her sister did. I wonder what she would be like if her blueprints (chromosomes) were complete. I’m starting to feel like there is so much I will miss out on with her.
I have dreams and hopes for each of my children even before they were born. I dream of watching my children grow up and become independent adults and possibly watch them create their own families one day. When you have a child that you know will never have that it creates an emptiness inside you that is difficult to ignore.
The lack of communication and her frustration with us for not understanding is overwhelming. I don’t want to have to listen for her sounds and coughing to make sure she is not choking constantly. I would like to sit her in her chair and have her feed herself and hold her cup. I have to watch for every sound to make sure something does not set her off. As she get’s older she wants ME more and no one else can fulfill her need for me, it’s exhausting.
I thought it would get easier as she got older. With each day that passes its one more day we have survived living with the syndrome but it’s also one more day that her development is more delayed. It’s one more day closer to the reality that the things I had hoped she would learn are further and further away and possibly may never happen. It saddens me more than words can describe. I find myself sobbing uncontrollably just at the mere thought of what’s to come and the possibility of goals she may never accomplish. I used to think because her physical features of the syndrome we not so prominent that her delay would not be severe. But she really is severely delayed and it hurts.
People think I’m so very strong because I seem to deal so well with life so well but the truth is, I’m not. I’m just so busy busting my butt to keep her healthy no one really notices my weaknesses and I cannot allow my children to know my true pain, it’s not fair to them. I’m learning to live with the what if’s but I honestly think I will never be able to let them go.
I’m adjusting, slowly….