Thank you to guest blogger Danielle Lalonde Smith for sharing her sons (and therefore her own) story of living with Neurofibromatosis. Danielle's son, Tyler, was diagnosed with NF at the age of 8. Please take the time to read Danielle's story and show your support :)
From our NF journey 7 years ago….
At some point during each and every day I want to cry; sometimes I do, sometimes I don’t. At some point every day I ask why? At some point every day my heart shatters into a million pieces. At some point every day I am angry; sometimes at myself, sometimes at everyone else. At some point every day I ask why me? At some point every day I hate myself. At some point every day I look at my son and wish we could connect on some other level. At some point every day I realize that I love this kid more than anything in the world, and I thank god that he is the way he is.
Today I am just freaking angry: it is his birthday, and guess what? 2 invited friends don’t show up or call at all, one other says he would rather go to the fair with his “girlfriend”. He has one invited guest and another friends’ younger son, and guess what, he is acting ridiculously immature and my thoughts are; is this the reason no one has shown up, or is he acting like this as a defense mechanism? I will never know because he will not speak to me about these things. I can try to talk, but know that it will just make things worse. It is these frustrations that continue to make me so so so angry. I have cried, cajoled, demanded, sweetly asked for help from the school which is supposed to be the only avenue available here in town, and have been shut down now for two years with excuses from everyone. What it boils down to is that no one seems to want to do their job or take responsibility. The other part is the judgement from staff about this “hidden disability”. He looks normal; make him act normal! What is wrong with your parenting? I realize that sometimes Tyler’s disease becomes all about me....how it is affecting me, how others are judging me, how difficult it is for me to cope. I take it as a personal affront when he cannot get the help he needs. How far do you push it? How hard? Will it make things worse for my child at school when all the staff despise me?
Does it even matter?
I look into those eyes and all I see is this incredible keen intelligence. He is so aware of his surroundings, but yet not in tune at all. How do I teach him that? Can I teach him that? I have no answers still. My son is this beautiful spirit that just needs to find his place and all will be well. Do I make too big of a deal about some things that really are very small in the grand scheme of things?
To be continued when I have the time to put my thoughts into words...when I can stop crying...when I have the time to take a break from being a parent, wife, child & nurse and put thoughts down productively rather than allowing all my negativity to shine through, to be continued when I have any notion that things have changed or improved or anyone has made a difference, even if I have made a difference...to be continued as we learn new things...to be continued as our world shrinks or expands...to be continued....