The day before Linda was really tired. She was just going back to work after two days off, She called for help from the shower because she was too weak to stand or walk. I got her back into bed and the oxygen back on for a bit before she went to work that night. Chloe was being challenging about homework and had required a meeting at school to keep her on track. Kerry was stressing about her new school program that begins this Tuesday, even the cats were cranky… the house was chaotic. I had worked too many hours, had to work the next day, I was thinking about the very long week I had set myself up for the next week, when I realized I had hidden the kids’ Valentine’s so well I could not find them. Damn! Now I had to get up extra early to get them new ones before I left for work so they would find them when they woke up. I could tell my weekend was not as well planned as I thought.
After early morning Valentine’s shopping, working the morning and afternoon, errands, lunch with my mom, Chloe time, and getting in an hour with Linda before she went to work, I raced off to what was supposed to be a relaxing dinner. I did enjoy being with friends, and I am used to Linda not being around because of our schedule, but listening to the conversations, I was finally hit with how different my life, and my life with Linda and the kids, has become from so many of our friends…
One couple is working on a new toy hauler to take their upgraded and planned off road toys dry camping in the desert. Linda and I still love camping, but we are strictly hook-ups only now. I don’t think I actually miss the dry camp part. I LIKE showers and AC and a pad for the RV. I don’t like lots of noise and dust from racing vehicles across the desert, and Chloe is a true daredevil and will eventually get really hurt on a bike if she has enough leash. Kerry has a heart condition and can’t get too excited or scared. Bike riding is probably not a good thing for her, although I am the one who will actually be scared. They can both ride with Linda on established roads where Chloe is not in charge and Kerry can get medical care. That works for me. But I miss the opportunity to even think about those as options any more. They just can’t be- our lives have changed too much in such a very short time.
One couple wants to rent a houseboat and do a group lake trip. They have all the kids sleep on a top deck as a group. Sounds delightful- really. Okay- not the water and rocking boat part, not so much. Not without Dramamine and a patch behind my ear and a bucket. Not the kids sleeping all together. Not with our kids who need quiet and space and time alone, and whose moods rocket across the stratosphere several times a day, and with one who will use whatever is necessary to make her point, and has language skills that would educate a drill sergeant, and another who can’t hear that she is yelling half the time. We would probably not be the best houseboat-sharing friends. Then there’s that oxygen thing, and needing power 24/7, and the shrieking alarm it has several times a day. And that Linda can’t swim anymore because she gets too short of breath. Other than that, it sounds like we would fit right in.
We went to Las Vegas last weekend, and Linda had trouble on the Baker and Cajon passes. It scared her, and made us both sad. Even a road trip now has to be planned to avoid higher elevations. She can use her little oxygen tanks, but they don’t stop her blood pressure and heart from reacting, and she gets so tired from the stress on her heart she has trouble functioning afterward. She also has to face her mortality every time one of those events occurs, and so do the kids and I. We can’t fly anymore, so the trip to Europe is now out, and Linda’s bucket list trip to Hawaii will have to be by boat if we can find one that will take us with our stuff (I will hide in the bathroom).
In April we are going to see the girlfriends, one of Linda’s favorite things to do, at a race by the beach. We are doing all we can to make it possible, including staying there so if she gets too tired Linda can go lay down, and the kids can have a space to escape to if the crowd is too much. It will be fun, but we have to skip the spontaneous things going with it so we are sure we have a place to go for both Linda and the kids.
This is not a pity party or poor me. It’s just a realization that we really can’t be who we were before, and we can’t do the things we used to. We can’t go out dancing with friends unless we drive ourselves and plan an early night, because dinner and dancing is too much energy. We can’t plan the trips we were going to take later because we are past later for flying. We plan one day of time with Linda on her days off now, not two, because one day is now just for sleeping. The other day is movies, dinner, favorite shows, Wii contests, long talks… Mama and kids’ time, favorite things time. But now it’s only one day, and some weeks not much at that. There are days the kids miss school or other things because it’s a good Mama day and time with her counts more than other obligations.
We also have to take the kids into account when we have good days because their needs have morphed and increased in some ways. We can see more of what their brains are doing with them, and we have to take special measures with them more than most people know. Their social groups have shrunk as they grow because their behavior can create issues with their peers. They may be 13 and 17, but they need supervision at a much higher level than their peers, and their moods can cause them to do things that other kids would not. We celebrate their gains in independence, and then have to redouble the checks and balances as they move forward and backward. It’s hard for them, and challenging for us. Most parents can see their kids getting ready to leave the nest at some point. We are not the parents planning to turn their rooms into something else. The girls will always need their rooms to be ready at home. We are not sorry about that- we are sometimes sad that they may not experience all that their friends will.
I wish we were still in the same world as most of our friends, but ours has changed forever in the last year. Between Linda’s heart and lungs and the kids’ brain development as they cope with adolescence and BP and ADHD and FASD and brain trauma residuals all at the same time, we just can’t do what other families do. We may not have the same time left as a family, and we have kids who need special handling but who want to be treated like every other kid. So I will listen more, but say less at those times that others are making their plans, talking about the colleges they want to send their kids to, thinking about retirement elsewhere… and be glad that the next morning Linda will still be able to come home from work on her bright yellow Spyder and that the kids will have something to smile about the next day and work on being grateful for what is, not sad about what can’t be.
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