Apologies of an Overwhelmed Mama

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.

Growing Pains

Take a trip back to grade school with me for a moment when the biggest insult in my hometown (besides "you kick like Kara," often heard at my soccer practices) was to call somebody a "weaver." We used the term freely as a put-down when someone was acting goofy, doing something we considered dumb, or if we really wanted to get a jab in and hurt someone's feelings. While most people would not consider "weaver" a derogatory term, it was. We all knew it referred to the Weaver School and Workshop, an organization in our town serving people with intellectual and physical disabilities - people with whom we had little to no contact (since this was before inclusion brought people with special needs into our classrooms) - people who seemed strange, silly, and even a little scary (as the unknown can often be). Imagine the social studies lessons about colonial jobs . . . blacksmiths, glassblowers, and weavers (now imagine the class erupting into giggling fits as the teacher moved the lesson along and tried to get us back to the point). By the time we entered middle school, most of us stopped using the term "weaver" as an insult. I guess somewhere along the way we grew a little and realized that it was immature and even hurtful. Being the mature and sensitive middle schoolers we were, we replaced "weaver" with "retard." I guess you could say we were a bit slow to learn.

We still are.

I was recently at an evening meeting run by our county's Intermediate Unit to educate parents and professionals about the process of transitioning a child with special needs into preschool. I walked in feeling a bit shy in the room of 100+ people who all appeared to know each other (excepting me) and chose a seat in the back row where I could eat my free pizza and hopefully glean some guidance about Henry's upcoming transition. I had chosen a seat behind a group of teachers, who were likely there for credits and free pizza (hey, no judgement here - after a long day of work, we all needed some enticement to sit through a 40 slide Power Point on education laws and individual rights). And so I sat, sipping my Diet Coke and killing time on Facebook waiting for the presentation to begin when I heard it. The R Word. Straight from the mouth of one of the teachers in front of me (who works in my county . . . possibly with my child someday). And before you suppose that this group may have been heralding the recent wave of advocacy against the R word and joining forces to "spread the word to end" it, I'll let you down and tell you that she was relaying a story about her day, repeatedly using phrases such as, "It's not like I'm retarded!" and "He was treating me like I was retarded!"

And this is where SuperKara, Brave Mama, Special Educator, and Tireless Advocate for Henry . . . sat in stunned silence and did nothing. I know, I know. My shyness took over and the thought of confronting this woman in front of her colleagues and admitting to eavesdropping on their private conversation made my knees wobble. I sat, processing, burning, and did nothing. And oh, I regret it. What was I afraid of? She couldn't hurt me more than she already had. "He was treating me like I was retarded." How's that exactly? Worthless? Stupid? Less than human? Like someone who somehow warrants ill treatment? Like someone (gulp) SHE would treat in such a way if they were, you know, retarded?

It's time to grow again. To mature. To leave behind the hate speech and evolve a bit, don't you think? But "retard" is not yet widely recognized as hate speech. Not when special ed teachers say it at county meetings. Not when my friends slip up and say it with self-deprecating humor. People justify their words with, "I didn't mean it like that," or "I didn't realize." Pleading ignorance excuses you just ONCE. I won't be shy anymore. Not about this. Not if I want Henry to experience the respect and dignity he deserves. I am going to be the obnoxious lady who interrupts your private conversation. I'm going to be the mom who calls the county to make sure their teachers are educated about hate speech. I'm going to be the party pooper who interrupts the laughter to ask her friends not to use that word. Sheesh, special parents are really annoying sometimes, aren't we? So are growing pains.

Treading New Ground

It would be impossible to say all that I'd like to say about the past few months in just one post. It's a long but hopeful story of a joyful boy with a tummy tube who continues to charm nurses and doctors with giggles and grins before he heads into surgery to dilate his esophagus each month. Henry is still not able to take anything by mouth, but they believe they are making progress (and we are all continuing to search for the cause of the stricture).

But that's really just part of Henry's life. Feedings have become routine, and while I myself indulge in occasional wallowing about him sitting in his highchair 4 hours per day and missing out on my favorite of the five senses, HE remains the happy and curious bright-eyed boy he has always been. And he continues to develop in so many ways . . . .

Thanks to his Early Intervention "Dream Team" which includes an Occupational Therapist, Speech Therapist, Special Instructor and two Physical Therapists (one of whom is an Aquatic PT), Henry has regained the abilities stolen by multiple weeks of illness and hospitalization. And now, we are treading new ground!

Having read the studies on the use of treadmills to increase an infant with Down Syndrome's ability to walk, I was thrilled when Henry's new PT said she had access to one and would like to start using it with Henry. According to the studies, infants with DS walk earlier and more typically if they follow a prescribed routine on the treadmill. Above and beyond walking, other benefits will likely result. The researchers say, "When infants with DS begin to walk their opportunities to interact and play with their age-mates increases significantly. Motor activity-play provides exploration and opportunities for new forms of cognitive development to emerge." You can read the abstract in its entirety here.

I plan to keep a video record of Henry's progress. At this time, he does 8 minutes on the treadmill at the lowest speed (.1), five days per week. As you can see in the Week One video below (his very first attempt), he drags his feet, which is to be expected. Frequent use of the treadmill will jump-start his body's natural inclination to take steps and give him the motor memory to increase the number of steps and eventually walk on his own. I should mention that this should only be attempted at the direction of a qualified Physical Therapist using the proper equipment (don't try this at home, kids). ;) We are very fortunate to have access to an infant treadmill, as my own adult treadmill starts at .5, which would be way too fast. Infant treadmills are expensive and the research is relatively new, which means they still aren't available from most hospitals or service providers. I sincerely hope they will begin to prioritize the use of treadmills for infants with DS and provide them as needed for this very important developmental step!

Here is Henry with his PT during his first attempt on the treadmill:



Go Hen!

And That's What You Missed On . . .

. . . Glee! No, I'm not going to post about Glee (though I am counting down the days . . . is anyone else a Gleek around here?).


What I AM going to do is try to recap our summer in little snippets and snapshots, attempting to showcase the highs and lows and get you up to speed, Glee Style. So, if you'll humor me, this post is created to be speed-read. Aaaaand, go:

So Henry got home from the hospital and everything was going SO well (despite the ng tube) that we went to South Carolina for a vacation with friends and had a great time . . .





We also had lots of visitors and cheered for the Phillies . . .




But after a while the ng tube was getting harder to insert so we finally got frustrated and brought Henry back to the hospital, where they discovered that he has a stricture making his esophagus as "narrow as a coffee stirrer" . . .



So he had a G tube put in, can't have anything by mouth, and has many procedures coming up to attempt to dilate his esophagus . . .



We celebrated Henry's first birthday in August and let him have a taste of the frosting (shhh) which he liked SO much that he threw a Royal Fit when we took it away . . .




We're all really tired from such an eventful summer . . .



Thankfully, Mommy got away for a girls weekend . . .



And now school is starting, therapies are in full swing, and we're getting ready for the Buddy Walk in a few weeks (Go Team Oh Henry)!



And that's what you missed . . .

Home!

I have been overwhelmed by the transition and have not had a chance to post, but Henry has been home for two weeks and is doing well! He is using an ng tube for all feedings until we have his next swallow study done on Aug. 3rd. Praying for good news that day, as we would love to move back to the bottle and food soon!

I will try to post a longer update soon . . . . Thank you for all of your caring words!

Making the Best of Boring

Hi, I'm Henry.  I've been in the hospital for four weeks.  And I'm bored.

So while my brothers are at Grammy and Paw Paw's house doing this . . .

My "big day out" going to the hospital atrium looks like this . . .

But I'm making the best of it.  I went outside yesterday with Mommy, Daddy and Uncle Matt, and I felt the wind in my hair.

I pulled my ng tube out when I got really bored yesterday, and I smiled and laughed.  Too bad Mommy and Daddy didn't get a picture of THAT.

So I'm having some fun.  I even had Music Therapy today!

They keep saying I will get to go home soon.  I hear it won't be today, but I'm sure I'll find something to do while I wait!

Setbacks

We thought today would be the day, but we're not home yet.  And it sure looks like we won't be until the end of the week.  Henry has had some setbacks over the weekend, including low grade fevers, the recurrence of a slight rash, a big bout of vomiting and several days of . . . hmm, I keep trying to think of the most blog-friendly way to say "diarrhea," but there doesn't seem to be one.  Feel free to leave suggestions in the comment box. ;)

The vomiting/rash combo gave me flashbacks about Day One, and I had a hard time holding it together when the resident said, "But he looks fine right now!"  Some day I'm sure I'll blog all about the frustrations of our first week here, but the theme of the week was, "He's fine, Mom!  It's just a virus!  He'll turn around by tomorrow!  You'll see!"  That is, until Day Six when he was moved to the PICU.  I know it's unlikely that the cycle would repeat, but after what we have been through, it was hard not to let anxiety get the best of me.  The good news is that the vomiting, rash and fever are gone.  Which leaves us with the . . . watery stools?  At first, we suspected that it was caused by the thickener we were adding to his formula (a necessity because he has been choking on thin liquids, probably as a result of being intubated for so long).  We tried some cereal as a replacement thickener, which seemed to cause or at least exacerbate the vomiting.  So we discontinued both thickeners and gave him a break from the bottle yesterday. 

In the meantime, he was scheduled for a modified barium swallow/videofluoroscopy this morning, which showed exactly where the liquid goes when he takes a bottle.  They offered him several different thicknesses to see if he could safely drink any of them.  Unfortunately, Henry aspirated every one, which means that he will be off the bottle for 6 - 8 weeks. I knew we would probably come home with the ng tube, but I never imagined we would have to go so long without offering him anything by mouth! After that, he will need to have another swallow study to see if there has been any improvement.  If not, we wait again and try again, putting several weeks in between each swallow study to avoid overexposure to radiation.  Good times.

Trust me, I know I should just be thankful he is here.  I am grateful for the miraculous recovery he is making.  But this setback was hard to swallow.  No pun intended actually, but it seems a fitting end to this post.