A few weeks ago, I had a date with my oldest son. I like that my husband and I find ways to spend special time with the kids separately. It is calm and we can really connect. Our oldest son has recently been diagnosed with a genetic disorder. That Sunday over Fro-yo (the mango poppers are awesome by the way) we discussed his feelings related to the diagnosis. Like any other human being he felt that because of this disorder there was something wrong with him.
I told him that he was born with Tourette’s and that God made him, every part of him so that he would be the unique special boy that he is. I told him there was nothing wrong with him at all. He just had another characteristic about him – like having blue eyes. I told him that I loved him just the same. He seemed to really lighten up and relax. I was so grateful for that moment. Of course I ended it with, “There is nothing wrong with you, except that you think something is wrong with you.” It was so good to see that wide grin and hear that sweet laugh.
Despite my reassuring words to him, I am scared and worried. His journey through life will be a bit harder, a bit more complex. This parenting thing seems to get more difficult day by day. Having that awful helpless feeling in the pit of your stomach that nags at you because you can’t fix something sucks. Knowing you can’t shield them from the ignorance and bullies of the world sucks. This is just the beginning of the journey and I have a lot to learn so that I can best help him with these new discoveries and difficulties. The best part was the relief that I think we both felt that if we talk about it out loud it is okay and that he is still the same sweet boy – this doesn’t change that. Being his mom is such a gift. What a blessing to be a part of his journey.
Thanks for sharing Michelle…I know exactly how you feel! It is very hard to have a child with a medical issue. I HATE having to talk about Jack’s peanut allergy…it is with us daily. He had such a severe reaction we have to stay on top of it. It is beyond stressful for me. Every birthday party, dinner out or any event that involves food gives me anxiety. I see life through a different lens than most. Always thinking about Jack. I am already losing sleep about next year. We just have to put our big girl pants and make things as easy as possible for them. Making them feel normal is so important…good job mama!
Nancy
Thanks for sharing with me, Nancy. I know it must be so difficult for you.