I can’t speak for everyone but at least for us choosing to parent children with medical, physical, or emotional special needs required sacrifice. Please don’t hear me wrong, I am not boasting or claiming recognition for our parenting choice. The sacrifice has been an honor. We are the ones that have been humbly blessed. I guess I just want to share a little of what most don’t see behind the closed doors, puffy eyes, and fake smiles.
We used to be really active in our community and church. We had lots of friends. For a while we tried to keep it up but honestly it was just too much work. Relationships require a great deal of work from all parties involved. There is a lot to be said about the phrase, “out of sight out of mind”. I miss having face to face relationships. I miss having stuff in common to talk about.
When we do leave the house as a family all our focus is on maintaining emotional and physical control of the kiddos. It is very easy for our kids to get discombobulated. (Learned that word from my daddy. It’s become one of my favorite descriptive words.) Having conversations with others while out is impossible most of the time. You will see us laugh a lot. We will probably even make it look easy. Usually we are holding our breath unsure of what behavior will sneak out it’s ugly head. We laugh to keep from crying. Deep down inside we are just praying we don’t disrupt the entire building and we all make it back home alive.
When we get out of the house without kids we try to enjoy our time but always in the back of our minds is what drama has happened while we were gone. How much time will it take to get everyone regulated again when we get home.
You will hardly see me in a dress or skirt in public. I absolutely love fashion and would dress to the hilt every day. Reality is there are a lot of bodily functions happening around here, vomiting, blood, poop, drool. Yep really glamorous :) Four kids have to be lifted, carried or chased. As you can see fashion has been put on the back burner. Oh but sometimes I try.
I used to have hobbies, enjoyed just talking to friends, and blogging. Now days my brain is so full I can’t even think to write. Conversations with friends are too hard because we just can’t relate to each other. It just feels fake.
When someone asks “how is everyone?” And I respond “we are doing great!” That usually means we are still alive and no one has “quit the family” today. My new definition for doing great.
It’s not all ugly. We get to see our kids reach goals everyone said they would not reach. We have the honor of cheering them on. We see the Grace of God every day. We get to hold there hands during tough medical procedures. We get to laugh with them. We get to see God healing their little hearts from all the trauma they have experienced.
So if you have friends or family parenting children with special needs please extend them some grace. They may not return phone calls. That doesn’t mean they don’t care, probably means life got so crazy they didn’t have the emotional energy or they forgot. If they stop attending social events it's not because they don’t want to be there, but because what it takes to get there may feel overwhelming.
That’s what is on my heart today. I am going to try to start blogging again. This time more of the day to day real stuff. I am not great with words. I am not a writer. Please give me grace in that area.