One of the most painful issues I have to deal with is the longing for a child who is not disabled. This does not mean I don’t love my disabled child because I do, very much. But I’m not sure the wish for a ‘typical child’ will ever leave me, particularly as it’s almost certain that my health will not allow me to have anymore children. Besides, in many ways I do not want another child. I have been there done that, and at a risk of sounding a bit of a martyr, those years were so painful and exhausting that I simply cannot go through it all again. Plus I would need to be open to the chance that, however unlikely, I could give birth to another disabled child, and I would need to accept that. If I’m honest with myself, I could not. It is also unfair to burden a future child with a sick mother and a sibling who requires lifelong 24/7 care. So I have accepted I will not have anymore children. My father’s surname will end with myself and my son, who due to his condition will not have any children of his own.
I have largely reached a point of acceptance, although this road has been agonising and continues to be a struggle. Life has not dealt me an easy hand, by any means. One issue that continues to test me to the limit is seeing ‘typical’ mothers and children; mothers posting their children’s photographs on Facebook, talking about putting up Christmas decorations, children chatting about the presents they want, and so forth.
I’m not under any illusions that families are perfect. I know full well that they are not. I appreciate the good times with my child. But I long for the simple, basic aspects of family life; a child excitedly unwrapping the Christmas tinsel, begging me for a mobile phone or ipod while I talk about having a dolly at their age, talking about the nativity, and the rest. My child understands he will get presents but he has no concept of what Christmas is or when it is. He can’t cope in high stress environments and he exhibits challenging behaviour around other children, meaning he has to be kept apart from young members of the family as they are at risk from him. Christmas can therefore be one of the most difficult times of the year. I appreciate the same is true for some parents of non-disabled children, although for very different reasons.
I have a friend from my school days who lives the other side of the country and consequently we don’t meet up very often. She has a daughter who is now 2 years old and starting to understand Christmas. This friend has invited me to a meet up after Christmas along with two other friends from our schooldays who I am not in contact with. I went to a meet up with these people two years ago along with their partners and found it very hard because I could not connect with them and their lives. This year I know I will find it even harder because I envy her; this one friend I had during my horrendous school years now has a lovely husband and a beautiful daughter, good health, job and a nice house in the middle of a rural area…and myself? I don’t consider myself to be worth any more or less than her, but I feel the pain of what I wish I had. Our friendship takes me back to a time when the future was open and my dreams seemed so real.
The answer is to bless where I am and bless where she is. Easier said than done. I can be very happy for some people and only wish them the best. I don’t want them to suffer or have a difficult life just because that fate has befallen me. I want to be able to bless people for what they have even if I wish I had the same. I know the answer is to be kind to myself and allow myself these feelings of loss and envy because they’re not abnormal or terrible feelings. I used to feel so guilty for not always feeling grateful for the child I’ve got but now I know that most if not all parents of disabled children grieve for the child they didn’t have and find it hard to spend time around ‘typical’ families with their chatty children. Working through such pain with self-compassion is what we need to do.
I still don’t know whether I will go to the meet up with my school friend. I hope that I can. I hope I can hear about her daughter and husband and wish them the best that life can give. Either way, my reaction is a reminder that my heart is hurting and needs the comfort of my Self. I don’t have to dress it up with statements that make it okay because at the moment it doesn’t feel okay. I guess in that way my heart is closed in fear of being reminded of what it has lost and being hurt more. Going down into the core of how I feel, into what is REAL, is the greatest act of love that one can do for self. Maybe then the rest will become clear.
My heart goes out to those of you struggling with the same or similar issues.