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.
Love you frin. God's grace is sufficient and that's all we need. You are a great mommy!!
ReplyDeleteAmber is so right!! You are doing great, Girl. And I'm praying that you feel God's grace covering over it all. I LOVE that you poured out an honest picture of where you are right now. I think this helps so many parents (obviously parents of special needs children) feel less alone. The list of "not done" or "done wrong" feels so big that it's easy to not see the list of "done with greatness." Kara, those who know you see your list of greatness and more importantly your family does too! Much of what you apologized for not doing are for things that are really great things - that are far less important than what you ARE doing. It's really tough to say no to good things in order to do more important things well!! (I'm learning this one myself.) And for the apologies for things that were important ... well, rest your head on that grace. We've ALL been there! I love you, Friend! Thanks so much for posting this.
ReplyDeleteSending you big hugs:)
ReplyDeleteYou mentioned your son has food allergies, but if possible have you tried Boost Essentials 1.5 for Kids? Comes in vanilla and chocolate with or without fiber. It was about 450 calories per 8 oz. We use it for our daughter with CP to get the calories in her. I order it from CWI medical online. I had preemie twins with lots of therapy those first few years - hang in there - it will all be worth it!
ReplyDeleteHi! Thanks for your suggestion. I checked it out and unfortunately it has milk products, which are currently on our no-no list. We have to avoid soy, dairy, egg, wheat, and nuts. :/ He takes Elecare formula through his tube, which we mix to 30Kcal, which translates to about 240 calories per 8 oz. Not much, but for now it's the best we've got. We hope he gets to add milk products to his diet soon, but our last food challenge (soy) was a bust! :( All the best to you and your twins!
DeleteKara I am in total awe of all you do. I keep you in prayer daily. You are totally awesome.
ReplyDeleteGod bless you and may you feel His strength and peace.
Kara, I think each mom feels inadequate in some ways. Knowing all that you are juggling, I am sure that you doing a great job loving and raising your boys well. Not in spite of all that you are doing, but just because of who you are. Sending you love and hugs!
ReplyDeleteYou are fantastic! No doubt others who are in your life have a vastly different perspective of you and how much you DO, not all the things you do not do.;-)
ReplyDeleteThank you - I read this again a few weeks ago and realized how much my life has changed since moving. I'm SO grateful for the new pace of life and the ability to focus on the little people who really matter.
ReplyDelete