Remember when you were in high school and the boy you had a crush on broke up with you but not quite? I remember Bondo, who instead of breaking up with me would say he was “washing his car” every time I called. Fast-forward 30 years and we are the best of friends. The joys of living in a small town.
Having a child with special needs or a rare disease is kind of like that high school break-up. Your “normie” friends don’t tell you they don’t want to be around you because your life is depressing, your child is disruptive or you place too many limitations on a “fun” activity. Your child has food allergies, they don’t get invited to the party. Your child has behaviors, that few understand. You have to clear their airway when they choke on a piece of fruit someone gave them and everyone at the gathering gagged (true story with Bridget. My mom: oh don’t worry it happens all the time).
Slowly your “normie” friends fade away.
Slowly, so slow you do not realize it has happened your world has become not about your life, your essence but about your child. You battle the insurance company for services your child desperately needs. You battle doctors who dare to place their medical degree (created in a vacuum) against your parent gut. You fight the school system for the best IEP and then fight to have it implemented.
You forget that you are a spouse.
You forget you are a parent to more than your child who has special needs.
You forget that you once danced on a bar.
You forget that you once ran a corporation.
Your life has become about the fight for your child.
You life has become finding a diagnosis (other than Bridgetitis).
You don’t know what to do. You feel helpless. You feel alone. You feel like if the doctors cannot find the answers and they paid a gazillion dollars on their degree, what good are you?
You get tired.
Tired of this life.
Tired of caring for a child who pukes on you.
Tired of cleaning puke that seriously goes from your neck, down your shirt thru your pants to you socks. It’s gross. It is seriously gross but you have to deal and you are not allowed to cry or be pissed because you are supposed to be “thankful” that your child is with you. You are told that “God only gives special kids to special people” and that “He only gives you what you can handle”.
I do not care if your child has a rare syndrome, like Bridget or if they have autism or ADHD or ODD or Bipolar or anxiety. There was no higher purpose involved. This was not the child you were promised in “what to expect”. There is no road map to this life.
You need a village of “normies”.
Which is much easier said than done. So listen up normies, when your friend has a not so typical child do not slowly abandon them. In truth you do not mean to let them go. It happens slowly. They stop responding to your invites. They begin to insulate themselves. They send emojis rather than a true response. Here is what you need to do to save your friend from a life of isolation:
- Call do not text them. A text can be fun, flip, an emoji or a “doing great! Bridget is awesome”. If you called me, you would hear the desperation in my voice because my MIL is driving me nuts, Abby is full on PMS, David is on his 3rd OT shift and Bridget just shit her pants.
- Invite them, even if the answer is I can’t. When Bridget was a lot more fragile I said no a lot. But because my friends kept asking, now that Bridget is healthy I say HELL YES I can meet you for a margarita! (Full disclosure it helps that I have Abby to babysit)
- Learn about whatever syndrome / disease their child has and ask questions. Ask how you can make their time with you easy
- Go on play-dates. Seriously sounds foolish but almost any child has fun at a playground. Let the kids play and check in on your friend.
- Ask. Ask your friend what they need. Even if it’s just one thing to make their day easier.
- Drop off a meal or a gift card for takeout. Your friend has spent 3 hours at a therapy center after working all day at their full time job. Give them something they don’t have to think about, dinner.
- Talk to their spouse. Tell them you are worried about your friend, say they need a night out or a day at the spa and arrange it.
- Pop in. Don’t say a word about the state of their house or their kid bouncing off the walls. Just pop in and say hi.
Your friend needs you. At the end of the day (even if it takes years) do not allow them to allow you to abandon them. They need you even if they do not know how to express it.