Can I be frank with you? Having a special needs child who needs constant supervision sucks the life out of your marriage.
There.
I said it.
There is only a small window of time each day that Robert and I are together without Dustin near. Very near. We have been giving him his nighttime med at about 6:30 which means he goes to bed at the same time as the other kids about 8:00pm. We shut the door to our bedroom and turn on the door alarm so we know he is inside, safe and sound, away from the littles. Could he be peeing in a water cup on the side of my bed? Most probably, don't laugh it happened yesterday. Could he be injecting cologne into every surface in our bedroom with a stray diabetic needle we forgot we had? Yep, could be, don't laugh it happened a while back. Could he be jumping from his bed to our bed just waiting until he breaks his leg? Sometimes, yes he has to share a room with us because of his issues. Is he hurting the other kids? Nope.
So that means that from approximately 8:45pm when the kids finally give it up for the night and Robert comes back downstairs, until 11:00pm-ish when I go to bed, I get to spend time with my husband. That is, if the laundry and the dishes and the other "stuff" of life gets done in the 45 minute window that I get alone. Yes, I get 45 minutes of my day ALONE.
45 minutes.
That's all.
Let's add that to the fact that when the littles are home we have to keep Dustin away from them for the most part. So for the vast part of the day one parent has Dustin near them and one parent has the other 2 kids near them. My kids have very little time upsupervised because of the dynamic Dustin brings into our home. Add that to the fact that we have NO ONE right now that will take Dustin for a couple hours. NO ONE to watch him when we need a night out. NO ONE . . . (my step dad has been ill since July, and my mom really struggles with Dustin's behvaiors so I don't feel like I can ask too often and burden her)
It is no wonder we get grouchy. It is no wonder we snap at one another. It is no wonder we fight like idiots
We are fine. The issues we have seem to dissolve with a good night's sleep. They do seem to rear their ugly head more often when it is particulary stressful, like NOW. But, rest assured, we will make it. We have to for the kids. I refuse to let IT get the better of me, of us. I love Robert with every fiber in my being. It will work, it has to.
I don't regret the adoption. Someone had to give the boy a home, and it might as well as been someone who loved him. He is better off for being in a loving home and not an institution that EVERYONE in the medical field who has contact with us thinks should have already happened. But, it is hard.
If I am being HONEST, sometimes I wonder what it may have been like living as a typically family with 2 typical children. Just as often as I mourn the life Dustin could've had, I mourn the life I could've had. Would my littles be better behaved? Would Robert and I have a better relationship? Would we do many more things in the community and have many more (as opposed to none) friends? I can imagine the answer is a reasounding YES!
But then I have to sit and wonder if Dustin had never been a part of our home would other things be different. Would the littles have the tolerance I know they are developing? Would I have learned to advocate for my kids and spread that information to other families who are struggling? Would I be as good at my job, understanding children and their unique temperments? Would I love unconditionally as deeply as I do now? I don't think so. . .
That is what makes it all worth it.
You get 45 minutes alone??!!
ReplyDelete:) Great post. It is hard. And it is worth it. God knows how to sanctify us. And thanks for sharing, because even I would have never thought that could be done with needles and cologne. Always learning.
Thanks for your honesty. It's so refreshing after reading blogs by special needs moms who insist that their lives are perfect and they wouldn't change a thing even if they could.
ReplyDeleteI can't imagine how difficult it must be to raise a child like Dustin and I can't imagine how difficult it is to BE Dustin. Getting the word out that alcohol is absolutely devastating to developing fetuses is so important.
I was wondering, what would Dusting do to your other kids if he were not supervised? Has he hurt them in the past?
Well said, very well said. I don't know how you do it. Having Little Man all by his lonesome is hard enough, doing it with other kids makes my head spin.
ReplyDeleteYou are absolutely right in saying that parenting a special needs child sucks the life out of your marriage. Our daughter doesn't have anywhere near the issues your son has, yet she has managed to pretty well suck the life out of our adult relationship. There are days when I really wonder if we are going to make it until her 18th birthday.
ReplyDeleteJust found your blog, even though you've been commenting on mine for awhile. We're going through similar marriage issues right now, so believe me I get it. I'm lucky in that I get more than 45 minutes of alone time, but it's after everyone goes to sleep (10pm to 2am), so it is slowly killing me. None of that is spent with Hubby who is smarter than I and goes to sleep at a normal hour.
ReplyDeleteHang in there!
Mary in TX