First, know that I love my life and my family. Our lives are full of challenges, but my heart is happy.
You may have noticed that I’m always smiling. You may have gotten used to my usual “Fine, how are you?” response when you greet me. It would be easy to assume that I have it all together, that I don’t need any help.
The truth is, if I told you what was truly in my heart and mind, every conversation would be heavy. They would never be very lighthearted. Never.
You see, the reality is, my life is tough. Each day brings difficult decisions and hard work. Sometimes getting out the door for school includes lots of things you couldn’t begin to imagine. The size of my worries and the weight of my thoughts are probably more than you want to know.
I fear being honest with you. I’m afraid you would stop calling. I worry I’d look like less of a loving mom to you if I let you in on my struggles.
So when you ask me how I’m doing and I respond that I’m doing “fine,” always know that I’m not telling the whole story—I’m tired and worried. A lot of the everyday things of life and homemaking are going undone while I do the extras of caring for a child with special health care needs.
Anytime I give you a “fine” or a “good,” realize that there are things that I need or that would make life a little easier. Consider doing some of these easy, low-cost things for me or others who live exhausting lives:
So yes, I’m holding back. Yes, I’m exhausted, and there are things that I need and things that I don’t tell you. I need your friendship and appreciate your support. You tie me to the rest of the world and help make my life doable. But also know that I’m doing well and will continue to hang in there.
You can find additional information on managing daily life on this website.
We have all found ourselves, at one point or another, comparing our child or our situation to another. The grass is always greener and you want what you can’t have—all phrases we have heard. Sometimes we must remind ourselves that we are all doing the best we can and we need to support one another and focus on the similarities, not the differences.
With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.