I'm sorry I didn't volunteer to chaperone the field trip. Or take on "Room Mom" responsibilities. Or notice that my kid needs his nails cut. Or his hair cut. I'm sorry if I didn't check his backpack. Or sign his homework folder. Or notice the note pinned to his shirt. Or the post-it note stuck to his forehead. Or sign him up for that activity before the deadline. Or even know there was an activity with a deadline. Or sign that permission slip. Or remember that it was a half day of school and pick him up on time. Or sell entertainment books. Or attend any parent teacher association meetings. Or contribute to any fundraisers. Or volunteer for any committees.
I'm sorry if I didn't attend that play date we keep talking about. Or have you over. Or meet for coffee. Or call you back. Or send you a birthday card (even though Facebook reminded me). Or really nurture our friendship in any way apart from Facebook, for that matter. I'm sorry if I was recently impatient with you. Or didn't hear you. Or listen to you. I'm sorry if I wasn't up-to-date on world news. Or local news. Or even notice that the house across the street from me is for sale (it really is, by the way, if anyone is interested in living across the street from a really busy family who forgets to take the trash cans in sometimes). Sorry about that too.
I'm sorry if I didn't eat right this week. Or exercise. Or drink more water. Or get eight hours of sleep. Or take time to read. Or take a long bath. Or notice that I need my nails cut. Or my hair cut. Is that a post-it note stuck to my forehead? I'm sorry if I didn't take care of myself at all this week, let alone taking care of myself first so I can care for others.
I'm not being sarcastic. I am sorry. I want to do all of these things. All of them! Except maybe volunteering for a committee. But it all comes down to triage. And most of these things just haven't made the cut.
The have to's (driving and school drop-off, a full time job (I usually work 8 hour days), plus errands, groceries, and cooking) take up most of the day, just like they do for anyone. And, of course, there's eating together, bath time, homework and bedtime routines (again, just like anyone else). What's left is devoted to, well, "special" needs:
Feeding therapy (not real eating time, just feeding therapy) is the #1 priority right now, which includes 40 minutes per day of focused therapy time, plus preparing food options with Henry's esophageal stricture and extensive allergy list in mind.
Next is calorie counting. He refuses most oral calories, so we had to add a tube feeding back in for a total of four one-hour feedings everyday. For an antsy toddler. Strapped into his booster seat so he doesn't crawl off and pull his tube out.
And speaking of feeding, the therapist of choice (yes, my choice, I know) is 45 minutes away. I believe she's worth it, but she wants Henry to see her at least twice a week. He doesn't, because I can't make that happen. She also wants him to swim. Often. As much as possible. At minimum, once a week. She has great reasons. Wonderful reasons. Well-respected, researched reasons. But I just can't make that happen either. Not once a week. Not at all. Not right now. And she's understanding. She gets it. But as a mom, I want so badly to follow these recommendations, and it hurts that I can't make it happen.
And this is just one therapist. Ideally, I am also following through with occupational therapy (make sure he finishes what he starts, opens, closes, stacks, pushes, points with his finger. . .), physical therapy (make sure he stands this way, plays this way, squats, steps, hold his hands lower, hold his waist . . .), speech therapy (don't let him do the sloppy sign, make him say it, keep track of his words, use the button to get your attention, practice and model, straw hierarchies, lip/tongue/cheek massage . . .), and behavior therapy (charting, antecedent, behavior, consequence, reward . . .). And I do. Usually? Sometimes? One of those.
I completely left out his health care needs, which includes frequent phone calls and emails, monthly surgeries, supply orders and clinic appointments.
And I also left out my other two children, who of course need a mama to give them time and love and a listening ear each day too.
So again, I'm sorry. I really am. I want to be a Room Mom. I want to pack homemade snacks and help out at bake sales and volunteer at lunchtime putting kids' straws in juice boxes. I want to catch every memo and be on time and pay in advance. I want to meet you for coffee and call you back and remember promises. I want to take time for you and listen to you, applaud and encourage you. I want to have you over for dinner and cook for you. I want to hear about your day, your life, your schedule. I want to speak intelligently about current events, eat right, exercise, get plenty of sleep and take care of myself so I can wake up tomorrow and do it all over again.
But I also want to cut myself some slack. I just hope others will too.
Showing posts with label children. Show all posts
Showing posts with label children. Show all posts
Wednesday, January 25, 2012
Thursday, July 2, 2009
Where Do I Begin?
"Begin at the beginning," the King said, very gravely, "and go on till you come to the end: then stop." -- Lewis Carroll, Alice's Adventures in Wonderland
Sounds simple enough . . . except that I am venturing into the blogging world to record my journey to and through motherhood. I don't think it will be as simple as "beginning at the beginning," because that would take me back to seven years ago when I was pregnant with my first child, seven years full of LIFE that I can't begin to cover in a blog post. I think I'd much rather begin at the present, reflect back to the beginning now and then, and of course dive into a whole lot of the "in-between" from time to time. :)
I'm Kara . . . wife to Scott and mother to two little kings (William and Edmund) with one more little king on the way (Henry). Some other hats include daughter, sister, friend, former special ed teacher, small time entrepreneur, and I'm currently working for Baby Loves Disco.
So . . . why record my venture to and through motherhood? First, I've long held the hope that sharing my story will somehow help ease the pain and burden of someone else who might be going through a tough spell in their own journey to (or through) motherhood. Also, I used to keep a journal (and haven't taken the time to keep it up since I've had kids) and I enjoy the process of . . . processing! :) This is just a much more public form of processing, but I'm not a very private person, so I welcome you to come along if you like and stick around for the journey.
There are many unknowns ahead. Henry (little man on the way) has Down Syndrome. We found this out several weeks, actually months ago and have been processing it for a while already. I will write more about that experience later, but for now I thought it would be pretty important to bring up, because it is certainly the next big step? hurdle? chapter? in my story.
I'm not sure who's reading along, but hey, thanks for joining me.
Labels:
baby,
children,
Down Syndrome,
mom,
motherhood,
Trisomy 21
Subscribe to:
Posts (Atom)