This is a guest post contributed by parent Allison Combs. The Combs have been married for 10 years and have two children ages 8 & 6. Their son was born at 32 weeks and later was diagnosed with Cerebral Palsy.
1. We feel alone. Please don’t intentionally or unintentionally exclude us or our children from activities with your children. Your children may be the only children that they can learn to develop friendships with. If a social situation doesn’t seem appropriate for our child, leave it to us to decide whether to attend or not.
2. Please don’t feel uncomfortable around us or our family because you don’t understand. Half the time we don’t understand either, but we need the sense of normalness that your friendship provides.
3. Let your children ask questions. It’s totally ok with us and we love answering and educating your children that ours aren’t that different from yours.
4. Sometimes we feel like venting about things we know you don’t understand. And it’s ok if you don’t know what to say. Just being a friend with an ear is all we need at times.
5. Our parenting situation isn’t all that different from yours. It’s still parenting and it’s still kids, we just have some extra things attached to our lifestyle.
6. Even though our lives may seem impossible at times (trust me we feel that way too!) we wouldn’t change a thing. If anything our special child has taught us so much about life, happiness, really appreciating the small miracles of everyday things. It actually makes us feel pretty damn lucky that we get to really appreciate all this that you may take for granted.
7. We get jealous. Yes I’ll admit that when I see a 1 year say or do something my 6 year old can’t do or say it sucks! Oh but when my 6 year old still does the sweet wonderful things that a typical child has long ago stopped doing, such as cuddling, petting my hair and looking at me with the most adoring eyes, it makes me appreciate my life anew every single day.
8. We are tired. And if I may not join in the monthly girls nights out, or miss a few social happenings it doesn’t mean I’m being a bad friend. It just means I may need some down time, or we have so much going on with therapies doctors appointments etc. But please don’t give up on us. We still love you and still need your friendship.
9. We worry. We worry all the time. About doctors, school, the future. And it’s ok. We know our future is yet to reveal itself, it’s all wait and see. And we know you know that too, and it’s ok to talk about it.