Forget asking us to go to a sporting event or an expensive vacation or dinner. All of our "disposable income" goes to doctors and therapists. In fact, I find it very humbling knowing that people whisper in disgust behind our backs because we can't reciprocate on footing the bill when someone has been so kind to pay for our way on something. Everything we have is a monument to the good provision of God. He gives what we need -- no more, no less.
What else would I tell you? Families like us always need help. We are in this for the long haul. This isn't a temporary condition that will get better some day. I know that makes you feel uncomfortable, but we didn't ask for this. Please don't always make us beg for assistance. That also adds stress. What a blessing it would be if someone treated us the way they would want to be treated! The sweetest relief in my twelve-and-a-half years of special needs parenting have come the very few times when someone unexpectedly showed up at our door with a meal or volunteered to take the kids to give us a break or said, "I'm going to help you clean your house," all without expecting anything in return.
It can get so isolating. Being stuck five hours in a small, windowless exam room every six months for a hematology visit is only the beginning of our alone-ness. Because we are a high-maintenance bunch or our daughter with ADHD, SPD, asthma and allergies is a handful, we don't get included in the fun we see our friends enjoying together. Since our son can't play many sports, the friends that have moved on pursuing such activities have left us by the wayside. When there is a medical situation, we can't make it to church. It sure would be nice to know that our church family misses us at times like that.
I am not trying to make excuses or throw a pity party. The fact is, our lives are just hard. It takes every ounce of strength to walk uprightly by faith when other children ostracize your child or other parents judge you or you are in the health room at school for your second or third visit this week. I can't sign up for the PTA or prepare the Campbell's Soup labels to raise funds for the school. I cannot help with Girl Scouts or chaperone at the school dance because I need every spare minute just to try and keep up with basic demands.
Our lives are messy. As with so many other things in life, there is so much you don't see. But we feel incredibly blessed. All we have to offer you is ourselves. And if you can handle that, you can be with us. We try to generously give ourselves as we are able. We know how much we have been given, and we want to give back.
Oh, dear. I've said too much now, haven't I? Well, I guess I'm used to others shaking their heads at me by now. But if I could leave you with one thing from my heart it is this -- Little things mean so much. Through our struggles, God has stripped us of the unimportant things in life and replaced them with what really matters. So, in the final analysis, any act of kindness shown to us is deeply appreciated. Unlike the average person, we understand that every little gesture is a big deal. Simple understanding, acceptance, love and compassion is what we need. There is much joy to our lives, but that doesn't mean we're not hurting. If you find it in your heart, a simple hug would even do.
PRAY: Open the eyes of our hearts, Lord. Help us as humans to treat others the way we would want to be treated.