I’ve been receiving e-mails and comments from those of you who live far away wondering if we are ok and why my blog has been silent these past few months. I appreciate your caring and concern and want you to know that it isn’t because I’ve forgotten that there are so many of you out there who love and care for us and Patrick. It’s just that, well, when times are turbulent, I’ve learned it is best to reduce speed and limit distractions. In this case, I decided (unintentionally) that the only way I could make it through this summer was to do a little less. And, in this case, it meant going radio silent.
Last you heard from us, we were coming home from Disneyland. (I still owe a post about our last day.) Well.. we came home just on time for the 4th of July, complete with fireworks and ice cream hosted at our house. And then, just as I finished unpacking and getting settled at home from our trip, Brian flew to Iowa for a business trip.
When he got home, he informed me that while he’d been out of town, his team had decided that in order to meet a deadline, they’d need to work some extra hours. That week, he had a few late nights, but we seemed to make it through ok.. tired, but ok.
But the next week, he had a conference in Portland. This time for a week. And, when he got home, his team had upped their game on the late hours.
His first day back to work, Brian didn’t come home until after 10 P.M. He worked no less than 16 hours a day for the next month.
Meanwhile, Patrick and I were making the best of things at home. By July, it was sinking in to Patrick that he really wasn’t going to be going back to school for a while. Summers are hard for a lot of moms, I know, and I feel a bit cliche saying that having my son home from school made for a tired mommy.
For us, it was a bit more than that, though. First of all, since Patrick was 9 months old, he has had either a therapist (or 2 or 3) coming into our home to help him or has gone to school where he was surrounded by therapists. In other words, Patrick has never, in his memory, had to rely on mommy alone to meet his needs.
And, because of a life full of hospital stays and high level medical care, as well as the effects of his brain injury, Patrick’s needs are greater than most kids.
Have I explained the term Sensory Processing Disorder before? Patrick is a sensory seeker. That means that when he is tired, when he is stressed, when he is overwhelmed, or when he is just plain bored… he needs movement. A LOT of movement. If this sounds foreign, think for a minute. When you’re sitting in a long lecture, what do you do? Do you chew on a pencil? Do you rock back in your chair? Do your twirl your hair? When you’re stressed do you go for a run? Clean the house? Grab a crunchy snack? Drum your fingers or tap your toes? Those are all examples of ways that you use your sensory system to calm or to focus yourself.
For Patrick, however, calming comes in the form of jumping on the bed, running down the street, pushing or pulling a heavy load, or shaking the furniture so hard I think it will break.
And, because he is young and his sensory needs are so great, he isn’t really good at calming himself. If I don’t help him, he just gets more and more worked up until he is hitting, screaming, yelling, throwing… all in an attempt to get my attention and get my help to calm himself down.
And so, here we were… No occupational therapist (the experts who specialize in helping kids cope with sensory processing) at all… no school… no play groups… just him and mommy and a world who doesn’t understand why he can’t hold still. And no daddy at night to help break things up.
And, on top of that, very fragile tubes connected to his heart that were at risk each and every time he felt out of control.
I quickly learned that the only way we’d make it through our day was if I set aside times two or three times a day to go to the playground or to play in the pool or to walk around the neighborhood.
Inbetween those times, I was trying to keep my house together. (A toddler at home can make a big mess. A toddler who is a sensory seeker can destroy a house in under an hour.) I was trying to keep up with family and church commitments. I was trying to meet all of his medical needs. (Remember that he still takes at least half a dozen medications morning and night, requires special diapering several times a day, needs replacement fluids run, needs TPN prepared. Once a week I have to order, meet a shipment of, sort and put away 2 coolers of IV bags and a case of medical supplies. And on, and on.) He developed a deficiency of a nutrient that is on backorder in IV form and the oral form made him so sick he’d vomit every day. The pharmacy changed brands of another of his medications and that tasted so bad he’d often throw it up. And so laundry went up and the floor needed mopped at least once a week. And have I mentioned how much this little boy resents the time mommy needs to cook and eat food that he doesn’t care about? Especially when we’re the only ones home at mealtime. Or how much he hates when your attention is on a computer screen instead of him and how good he is getting at typing or stealing the mouse or resting his chin in the pressure point on your arms o you can’t move your fingers without pain and HAVE to stop and do what he’s asking for?
My days start as soon as the sun rises, somewhere between 6 & 7:30 a.m. and end somewhere around 11 p.m. when the last of his IV fluids are finally hung. Thankfully, he most often sleeps through the night because if he wakes, thanks to his sensory needs, it takes hours to fall asleep again.
There were so many days I’d just sit down during nap time exhausted, look around my perpetually messy house and just wish I could do something to make it better.. But then decide I’d better sleep, or I’d never have the energy to keep up with Patrick when he woke.
And so many days I just wanted to scream to the people who, well-meaningly, would expect me to keep up with the same things I’d always been able to do before. I wished I dared say that if their dishes were done or their laundry was folded or their beds were made or their bathrooms were clean or their weeds were pulled…if they’d read a book, been to the gym, written a letter… or even if they’d done something so simple as showering two days in a row.. that they were probably doing better than me.
But this life is hard to wrap your mind around unless you’re living in it. I’m not unhappy. (Though my anxiety does rear it’s head from time to time.) I’m just doing the best I can. I love my son and enjoy our time together. But there are just a lot of things I can’t keep up with if I’m keeping up with him.
The times I’ve vented to friends about how overwhelmed I am, the reply is often “well, that’s life with a toddler.” And inside I sigh, because I know that it’s a little more than that. But I also know someday I’ll miss these days, too.
Brian’s bosses finally figured out that 16 hour days weren’t good for employee morale or families, either and he’s gone back to a normal work schedule. Patrick started school and I’ve been granted a beautiful 6 hours a week to work and exercise and think and clean without wondering if Patrick is safe or into something… or, worst of all, really standing just behind me stuffing things into my pockets so when I turn to walk, I’ll step right on him and he’ll fall down and cry.
Wednesday was Patrick’s first day of school. He was so tired when he got home, that he fell asleep for his nap without the usual 15 to 30 minute wrestling match that is usually required to help him settle down his mind and body. When he woke up, he was excited and off the walls a little bit, but he knew what to ask for. He asked to play in the basement where he could jump on the beanbag chair and watch signing time until he felt calm again. I folded laundry while he did this, and then when we were both done, he climbed up on the futon next to me and snuggled down with his arms around me and we watched TV together. For half an hour.
I think it’s the first time he’s held still in months.
So, it’s about time I come off radio silent.
It’s been a busy summer and I’m going to do my best to catch you up on all the amazing things that happened with short little posts full of pictures, fun stories and smiles.
If I owe you a personal e-mail, I’m going to do my best to get to those, too, as soon as I can. I’m still trying to catch up on the house and yard and a million other things. But you are in my mind and heart and I will write as soon as time permits.
Thank you for your patience, interest, help and love.
Patrick Hoopes 