Lina’s birthday weekend, in photos
Did you SEE what he just did? I am so embarrassed.
Cake!
And a little video of the birthday song
(She did eat the cake and enjoyed it very much.)
Photos and video courtesy my brother, Ryan Harrell. Thanks for being the designated shooter, Ryan!
My baby girl is one year old today.
There is so much swimming around my head, I hardly know where to start.
One year ago today, this was me:
And not long after, there was this:
And then came the chaos. (Full story here, for those who haven’t read it: Part I and Part II.)
I look back to the moment I first held Lina, just a few feet from where I sit now. I remember what I felt when I first laid eyes on her, long before my conscious mind had processed what I was seeing. I looked at my daughter, and she was not what I expected. I didn’t know what that meant yet, but I remember experiencing an instant shift. In my memory, it seems as if there was a nearly-audible “CLICK” as I looked at that tiny, red bundle. Without understanding what was happening, my world adjusted and my heart opened. It was as if a train had suddenly changed tracks. I pulled that baby girl to my breast, and from that moment, there was no going back. I don’t know for sure if it was a formed thought, but I knew: “She is not what I expected, but she is mine.”
A year has gone by. First, there was grieving. Sometimes, there still is.
There was never any question of loving and accepting our precious girl. But we had to grieve the baby we thought we were having, the parenting experience we thought we were signing up for. There are still moments I watch other families and feel a stab. Sometimes I wish for a simpler life. Sometimes I have flashes of resentment for our increasingly-packed schedule, the extra worry, the complicated decisions.
But always, always, always, I am so grateful for my daughter. A simpler life would not be worth having if it didn’t have Lina. When we meet new people, when we mingle with friends, when we visit the local park or library, I feel one thing above all else; I feel pride. My baby girl (who is not really a baby any more) is awesome in countless ways. Above all, through all, I am proud to be her mother. (Jon, it should be noted, wants it said that he is also extraordinarily proud to be her father.)
This past year has taken me to school. I have learned that hiding behind my conviction of my own open-mindedness lay a lot of preconceived ideas about people with certain kinds of differences. I’ve learned what it means to toss out the superfluous and really get down to the core of what you want for your kids. I’ve learned a new vocabulary. (Levothyroxin, conductive hearing loss, baha, organized feedings, hypotonia, ling sounds, TEIS, ISP, IEP… The list goes on.) I’ve learned to navigate the Vanderbilt metropolis like a boss. I’ve learned how to find and read school achievement stats. (Thank you to my good friend Kelli Gauthier on that one.) I’ve learned that my prenatal worries over bonding with a child who wasn’t biologically mine could not have been less relevant. I’ve learned that God really is as big as I need Him to be.
The lessons are ongoing. The challenges are ongoing. But Lina is growing and changing every day, and I get to be there for it. I get that front-row seat. I get to be her mom.
Lina is a year old. There’s still a lot I don’t know. But of one thing, I am certain: I’m so glad she’s mine.
Happy birthday, Eline Katherine Sharp. My love for you is endless.
Sorry to make this blog fundraising central for the next few weeks, but I will be posting regular reminders that we are raising funds online for the 2013 Buddy Walk on October 19. The majority of funds will go toward essential programs for people with Down syndrome and their families here in Middle Tennessee. The Down Syndrome Association of Middle Tennessee is doing great work, and our family directly benefits from their efforts. A small portion of funds will also go to the National Down Syndrome Society, which is doing great work at the national level.
I am in birthday party planning mode this week. In the rare quiet moments, I marvel that in two days, my Lina will be one year old. It doesn’t seem possible. I have a lot to say about that, but I’ll save it for an upcoming post. For now, I’ll just say that she is an amazing gift to our family, and we are so grateful for the support resources our community offers for her and families like ours. These organizations depend on the generosity of people who understand the importance of what they do. Your donation will mean the world to us as we celebrate one year with our sweet girl. THANK YOU for helping us reach our very optimistic fundraising goal!
And local people – come out and walk with us! It’s FREE if you register by September 19. We’re going to have a great time strolling around Centennial Park with a lot of other awesome people. Celebrate with us and be an in-person member of Team Lina!
Corin has been talking a lot about being a daddy. He tells me he’s a daddy who’s still a little boy. I think he is trying to say he’s a daddy-in-waiting.
Yesterday, he said he is definitely going to have a little boy, but he wasn’t sure if he was going to have a little girl. I told him little girls were a lot of fun, too, and he decided that yes, he wanted a little boy and a little girl. He asks a lot about family relationships and is starting to get clear how it all works. Last night, I heard from the living room, “Lina, when I have a little boy, I will be his daddy, and you will be his aunt.”
The one part of the equation that remains fuzzy is the concept of a wife. He is unclear on which member of our family will be his children’s mother. I heard Jon explaining to him last night that he would marry someone from a different family. I think he’s still mulling that over.
Frankly, I’m content with this state of affairs. There will come a day when I’m no longer queen of my son’s heart, but I hope it’s a good, long way off yet. Somewhere, another family is likely raising a little girl who will capture Corin’s heart and share his life. Someday, she may be the mother of those children he already imagines. I pray for her sometimes, and for her parents. I pray that they are raising a strong, smart, capable woman of character, someone who will be fun and interesting, kind and unselfish, godly but not pious, a well-matched partner and companion for my son. I’m not holding back on the list of stellar qualities, and so I pray that I will help Corin become the kind of man that girl will want to marry.
For now, I love that he wants to be a daddy someday. As for that little girl: she can wait her turn.
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.
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.
And so goes life here in the Sharp household.
Eline at 11 months:
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.
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.
Carrot loaf was a HIT
(We’re overdue by five days, and the pictures were taken in Mimi’s kitchen instead of the usual location. But 10 months she is, so here goes…)
Eline at 10 months:
I can’t believe my baby will be one in less than two months! There are real challenges day-to-day, as we deal with Lina’s quirks and needs. But there are also times when I’m glad that I get to enjoy my littlest being little for a while longer.
A Dash of the Unexpected 