Monthly Archives: August 2013

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Team Lina!

The Buddy Walk is the biggest fundraiser every year for our local Down Syndrome Association, and I hear it’s a really fun experience to mix with so many other local families in the Down syndrome community. Last year, Lina was just a few weeks old, and it was just too much for us to make it out. But THIS year, we’re going to do it, and we’re going to do it right!

On October 19, we’re going to get as many friends and family out as we can to walk with us as part of Team Lina. We’re going to have T-shirts, we’re going to have fun, and here’s the part where you long-distance folk can get involved: We’re going to raise money, starting now.

The Down Syndrome Association of Middle Tennessee is a tremendous resource in our community for people with Down syndrome and their families. From the moment a new little one with Down syndrome is born (or before, in the case of a prenatal diagnosis) all the way through adulthood, this organization provides support, education, advocacy and a wide range of programs and resources. The DSAMT is doing essential things to improve life for people with Down syndrome and to help our broader community be a welcoming and accepting place for so many people like Lina. We are excited about this opportunity to help in the work they do.

So, dear readers, I am asking: Help us make this difference. Whatever you can afford to give will be so very appreciated. Be a part of Team Lina! Donate to our Buddy Walk fund, and help us fuel the changes that will make life just that much better for our Lina and so many others.

DONATE HERE 

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Mommy Guilt, amplified

Mommy Guilt is such a real part of having kids. Every mom I’ve talked to experiences it. Some of us really struggle with it. Some of us are able to more easily relegate it to the back of our minds, where it only tickles occasionally. Every kind of mom wonders sometimes if maybe that other kind of mom knows something she doesn’t. Every mom falls short of her own expectations pretty regularly and worries that it has affected her kids. All of us go through phases where survival feels like the best we can do, and we’re not at all sure it’s enough.

I am realizing that having a child with special needs introduces a whole new level of Mommy Guilt. Therapy appointments at this age are really more about me than they are about Lina. The therapists are certainly keeping a close eye on her to evaluate how she’s progressing and which areas we need to be focusing on. But appointments are also about the therapist showing me activities we can be doing at home to support her development. Without the work at home, therapy would be pretty pointless. Two hours a month isn’t going to change the trajectory of Lina’s development. The thing is, I don’t feel like I have a solid grasp of exactly how much time we should spend on these activities, and I worry constantly that I’m not doing enough. Sometimes I go several days without reading a book to Lina. I had a hard time typing that, because it feels like such an awful admission. It would almost be easier if the therapists would write out a specific prescription: “Spend 20 minutes every day on this list of activities and come back in two weeks.” Then at least I’d know for sure how far short I was falling.

I worried some (and still do) about these things with Corin. That mom uses alphabet flash cards. Should I buy flash cards? But really, I’ve been pretty comfortable with my methods. I’ve read enough about the problems of hyper-parenting that I felt my more laid-back approach was probably just about right. We have worked learning into our everyday activities, and it seems to be working.

Then came Lina. With her, the stakes are so much higher. I know she needs a more hands-on approach, and learning and development for her is a very deliberate process. I can’t assume she’ll learn how to crawl and walk and talk and read when she’s ready, as I have with Corin. She needs my help with these skills, and I know how much her future success depends on my ability to be her first teacher and strongest advocate: always pushing, always encouraging, always equipping. Imagine, then, how much louder that voice in my head is that asks, But what if I fail? What if in my effort to balance the needs of two kids, the house and life in general, I’m not giving Lina everything she needs?

Thankfully, I’m a mostly-balanced and reasonable person who knows that Lina is doing well and making very good progress. I know that amidst all I have to juggle in a day, I spend a great deal of time talking to her, playing games and working on her gross and fine motor skills. Yes, I have to be more deliberate about the work I’m doing with her. But I’m also realizing how much of the intuitive play we do with babies is actually promoting development. For example, the speech therapist talks about how key back-and-forth babble is. Lina says “Da-da-da,” and who really has to stop and think before repeating back, “Da-da-da?” It’s natural, and it’s key to helping her understand communication. We talk to her constantly, up close where she can hear us clearly. We really do try to read to her every day. And yes, judgmental voice in my head, the time she spends sitting and playing on her own with her toys is also promoting development.

Not that any of this completely silences that Mommy Guilt voice. I am working to lower the volume, but I don’t know if I’ll ever figure out how to entirely turn it off. I’m probably going to keep worrying that I’m not spending enough time in structured therapy activities. I’m probably going to see the moms with flash cards and wonder every time if I should go to Amazon right now and order my set, quick-before-I-forget. (I actually think we’ll probably use flash cards with Lina at some point, but not, you know, before she’s a year old.) Life is a constant juggling act, and I don’t know that I’ll ever have the balance just right. Most days, I can live with that.

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In the past week…

  • Corin perfected his somersault.
  • I started running in the neighborhood every morning before the kids are up.
  • Lina happily let my mom hold her for the first time in months.
  • We outlined a tentative plan for a move to Williamson County in the next couple years.
  • Lina and I caught colds.
  • We met Corin’s new Mother’s Day Out teacher, the very sweet Ms. Shelley.
  • Tennyson consumed half a package of hot dog buns, dragged with finely-honed skill from the very center of the kitchen island.

And so goes life here in the Sharp household.

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That sweet face – 11 months

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Eline at 11 months:

  • Easily sits unassisted for very long periods, with great trunk rotation to reach toys and see what’s happening around her.
  • Loves to play with toys, waving them around, chewing them, passing them from hand to hand, banging them on the floor or table, and eventually dropping them. She has been building great arm strength lifting heavy toys!
  • Is able to bear her weight in an all-fours position for short periods, and will start rocking back and forth in a pre-crawling motion while supported.
  • Laughs more readily and has a broad range of vocalizations, including lots of consonants (da-da, ba-ba, la-la, na-na, with some “g” and “m” sounds thrown in occasionally). Has started mixing her vowels and consonants in new ways and is beginning to respond to our vocalizations with answering sounds, though not necessarily with the same sound or pattern.
  • Is teething heavily. One top front tooth has mostly cut through, with the other still working its way out. This will make a total of four teeth.
  • Has started reflux medication to help with feedings, which seemed to result in dramatic improvement at first, but now issues are cropping back up. A little more time will tell whether it has really made a permanent difference.  If not, an official feeding evaluation is likely in order. Takes anywhere from 3 – 6 ounces per feeding, with total daily intake ranging over the past month anywhere from 16 ounces to 27+. Still feeds five times a day.
  • Continues to strongly prefer mom and dad and brother but is beginning to tolerate other family members, friends and therapists a little better.
  • Has physical and speech therapy appointments and TEIS teacher visits twice a month.
  • Has not been able to use the loaner traditional hearing aids, so we are in the process of ordering a bone anchored hearing aid. The ENT was able to evaluate her ears better at this past week’s visit and has confirmed that her hearing loss is due to the tiny size of her ear canals rather than fluid, so tubes will not be placed. She will simply need to grow until her ear canals are large enough for sound to pass through more easily. The ENT expected this to take at least two years.
  • Is generally a happy, smiley baby and is very engaged in what’s happening around her. She loves to study faces and has a fixation with hair. She loves the “honk mommy’s nose” game, which I am likely going to regret having taught her.
  • Weighs about 17 1/2 pounds and wears size 6 – 9 or 6 – 12 month clothes.

I find it truly shocking that she is now approaching her first birthday. I am trying to soak up as much snuggling and cuddling as I can, as I know it won’t be long before she’s truly on the move. I love how affectionate and sweet she is. I am incredibly grateful for my girl and what she brings every day to our family.

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But for my neck

You know that saying, “I’d lose my head if it wasn’t attached?”

Yesterday started with me getting up early to shower so I could get the kids fed and dressed in time to get Corin to Mother’s Day Out by 9 a.m. It was pouring – and I do mean POURING – when I pulled into the parking lot and immediately realized I must have missed a memo. The parking lot was nearly empty. I broke a cardinal rule and left the kids in the car while I sloshed to the door to sheepishly ask the one person in the place what exactly I had missed. Sure enough, no Mother’s Day Out this week, an open house next Tuesday, and then the normal schedule resumes for the school year. I needed to pay a tuition balance, but of course, I hadn’t brought my checkbook in. I sloshed back to the car to get my checkbook, dripped on the patient woman’s desk while I wrote her a check, and sloshed back out to a very disappointed three-year-old.

Of course, the lack of Mother’s Day Out meant Corin would be coming with me to Lina’s physical therapy appointment. Thankfully, it wasn’t a hard sell. They have toys.

We showed up on time (okay, 5 minutes late) and waited quite some time before the therapist came out and said, “Remember how I asked you last time if you had a recurring appointment on the schedule and you said you did?” Yeah. Oops. Thankfully, the kind therapist was able to see us, and we’re now on her schedule for the foreseeable future. Corin enjoyed himself and Lina had her best appointment so far.

By the time therapy was over and I’d fed the baby, it was well into lunchtime. We headed to the Panera just around the corner.  Corin likes the food there, and it’s healthier than some options, but the logistics are a challenge. Maybe there’s a way to gracefully manage two children while ordering at the register, locating an empty table mid-lunch rush, finding somewhere to stash the baby carrier and then ferrying two meals and a baby back to the table. If so, I haven’t found it. I wish I’d gotten the names of the kind strangers who stepped in to help, because they deserve public thanks.

The brightest spot all morning was the thought that the cleaning lady was at that very moment polishing things to a shine at home. That is, until I realized upon our return that I had completely forgotten to let her know we wouldn’t be home. The key was under the mat, but of course she didn’t feel comfortable barging into my home without instruction. I listened to the answering machine message – “No one is answering, so I’m leaving. I can come next Friday, if you want.” – and nearly cried.

The final chapter came at around 5 p.m., when I got a call from the agent who sold us our new health insurance policy, which it turns out had been voided for nonpayment, despite our having filled out all the paperwork for autodraft payments. (Thankfully, it’s all cleared up: a brief phone call this morning and the customer rep freely admitted it wasn’t our fault, waived the reinstatement fee, and promised all claims will be paid.)

There are just some days where you say a prayer of thanks you made it to the end. I gotta tell you, that was not my A game. But it’s also true that this narrative leaves a lot out. It doesn’t communicate how many times Corin’s commentary made me laugh, or the pleasure of sharing his first Dairy Queen blizzard, or the way Lina’s face lights up at brother’s antics, or the goofy way she pulls her foot up past her ear in the high chair… There is magic. It’s happening, even as I’m facing the truth that this once-organized and relatively together adult really would lose her head if it wasn’t attached.

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Carrot loaf was a HIT