April 25, 2014 by Jolene

I CAN hear you now!

I haven’t said a whole lot here about our move. Maybe that’s odd, given it’s the biggest thing happening in our lives right now. It’s a little tricky to know what to say, though, because circumstances seem to change on a daily – sometimes almost hourly – basis. The bottom line is that nothing about our plan to move has been simple. It was a difficult decision to make, and now that the ball is rolling, it’s a bumpy ride. I won’t drag you through the minutia and mini-dramas; I subject my parents and a few close friends to that and hope they still love me when it’s over. Suffice it to say we currently have no idea exactly what lies ahead. We made the decision this week to walk away from the house we were contracted to buy due to growing concerns about the property, and we are facing some challenges in the sale of our home, as well. We continue to pray to the only One who knows all ends and trust we’ll come out of this where He wants us to be.

I have a suspicion I’m being allowed another growth opportunity, because a state of limbo is my very least favorite place to be. I do not like uncertainty. I want to make plans, take action, forge ahead. I am getting a lot of practice at doing the exact opposite: sitting back, waiting patiently (ahem), allowing circumstances to unfold. It does not come naturally. I realize in times like this that for all my talk about faith through the unexpected, it’s still an area where I struggle. I trust that God is going to work all this out. I really do. I just wish He’d give me a peek ahead so I don’t have to do all this waiting and wondering!

Meanwhile, life moves on in other areas. Lina was a very sick girl for a lot of this week but is on the mend, thanks to good old amoxicillin. (We suspect scarlet fever. Add that to the list of scary-sounding diseases I used to think were obsolete.)

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Poor, sick baby fell asleep on the dirty laundry.

And then, today, Lina had an audiologist appointment. (I realize I’ve buried the lede here…) Because of her early diagnosis of conductive hearing loss, she goes in for periodic hearing tests and checks on her bone anchored hearing aid. The booth hearing tests they use can be problematic for young kids. They hadn’t gotten great results from her previously, because she wasn’t fully participating in the test. I had low expectations for today’s appointment. Imagine my surprise when Lina turned immediately in response to nearly every noise the audiologist played through speakers, over a range of frequencies and volumes. Girl tested at normal hearing, without her hearing aid! They will repeat the test in three months, and if the results are similar, they will remove the conductive hearing loss diagnosis. It was pretty exciting news, and a huge relief for me. I’ve struggled with a lot of guilt over how little use Lina gets from her hearing aid, thanks to her refusal to leave it on her head. I can now silence the guilt gremlins and know that my baby girl is likely hearing me just fine.

In a week of plentiful challenges, I’m so grateful for the win on this one.

January 16, 2014 by Jolene

Nobody’s consolation prize

I was reflecting again recently on how my perspective has evolved since Lina’s birth.

I look at Lina now, and I see a beautiful little girl, growing and learning every day at her own pace, just like every child does. I see a precious individual, a priceless gift to our family. I look back on my pregnancy and her birth, and I no longer feel loss. Instead, I feel only the joy of her. I absolutely cannot imagine having any other baby. She is perfect for us, the child we hoped for and dreamed of for so long. She is in no way less than: not less than any other child, not less than the imaginary child we expected. She is complete and amazing.

I used to read similar thoughts from parents of kids with disabilities. I would nod and think, “That’s so awesome and so true.” But I realize now that deep down, those parents sounded to me like second place contestants trying to be okay with the consolation prize. I thought they were being brave.

I’m ashamed of that truth. And sometimes, I’m ashamed of the grief I felt after Lina’s birth. I know in my head that it was necessary and healthy to grieve the baby I thought I was having and to mourn the more difficult path that lay ahead. I realize that stabs of pain and grief will continue to be a part of life as Lina’s mom. (Pain and grief are probably guaranteed in the life of any mom.) But in some ways, that initial grief feels so out of place now. Why would I grieve this amazing child? I look at her, and I feel pride and joy. Disappointment has no place between us.

This has been my journey. There’s a lot more to travel yet; we’re really just getting started. I am not brave or extraordinary. I am a mom who loves her kids like crazy. And though it no longer feels necessary to say, I’ll state for the record: Lina is nobody’s consolation prize.

November 26, 2013 by Jolene

Whatever may come

I sat in her darkened nursery this afternoon, rocking my sleeping baby, awash in a love so deep it hurt.

I prayed a new prayer. I told God that I was opening myself up to whatever her future holds.

I have always chosen optimism, but today, maybe for the first time, I could throw my arms wide to the unknown. I realized, in the rhythm of the rocking chair and her steady breathing, that being this child’s mother is worth it. Whatever it is, whatever may come, it is worth it. I am hers and she is mine, and that joy is bigger than any fear for the future. I suppose I’ve known that for a long time, but I felt it in a new way today.

In this season of gratitude, I know for certain that I am incredibly blessed.

November 17, 2013 by Jolene

Monica and David – and Lina

Last night, Jon and I watched Monica and David.

Jon bought it for me last Christmas, and it has taken us this long to watch it. We both wanted to see it, but we also feared it more than a little.

It’s a 2010 documentary film directed by Monica’s cousin, and it is the love story of two adults with Down syndrome. It follows Monica and David from their wedding through their first year of marriage, filling in back story and sharing an intimate view of the families who support Monica and David in their efforts to live as independently as possible.

The movie does not gloss over the complexity of the situation, and it was that that kept us from watching it sooner. What if it brought too much to mind our greatest fears, rather than demonstrating our highest hopes? This worry has become very much a part of our lives in the last 14 months. We often feel that tension between wanting to see and be encouraged by adults with Down syndrome, but also fearing too much exposure to the challenges that lie ahead. We know challenges will come, and we certainly talk about them as we discuss the future, but we have chosen not to focus on them. Instead, we focus on how much is possible for Lina; we dream very, very big. We instinctively shy away from anything that might cause us to impose limits on her or what is possible for her future.

The movie was beautiful and ultimately more encouraging than discouraging. I have been thinking about it a lot, and about what it says to me about Lina. There were parts that were painful in their reminder of the realities of intellectual disability. But Jon and I both found plenty of hope in what these two people have found in each other and the life they are forging with a lot of support from people who love them. We could identify with and understand so much about their parents, and we also saw mistakes we hope to avoid.

We were reminded how fortunate we are to be raising Lina now, in a time of great progress in medical care, research and attitudes. In 1983, the life expectancy of a person with Down syndrome was 25. Twenty-five! That life expectancy has since nearly tripled, to 60. Tremendous strides in research are being made, including the recent announcement that scientists were able to turn off Down syndrome genes. (That admittedly brings up another very complicated discussion, which I may tackle here one of these days.) Thanks to the tireless efforts of so many in the Down syndrome community, societal attitudes are changing and people with intellectual disabilities have more opportunities than ever before.

The movie also reminded us of things that still need to change. Monica and David both had a strong desire to work, but it was a significant challenge for a number of reasons. One of the special features on the DVD delved a little more into the issue of employment for people with disabilities, and I did some of my own digging. The U.S. Department of Labor Office of Disability Employment Policy reports that in October 2013, the workforce participation for people with disabilities was 20%, compared to 68.5% for the general population. That’s pretty dismal, and I know the number is much lower for people with intellectual disabilities.

We don’t get discouraged by those kinds of numbers, though, because Jon and I operate from a very firm conviction that Lina is exceptional. Maybe we’re being naive. I suppose some will think so. But we continue to believe that by holding firm to that conviction and providing all the resources we can find, we will infuse Lina with the courage and give her the tools to do amazing things.

Perhaps more than any other takeaway, David and Monica was one more demonstration of a lesson I am still learning in a whole new way: people with Down syndrome are, always and above all, people. There is so much more that makes my child like any other than makes her different. I used to think I knew this, but I didn’t, really. Now I am living it. I know that my child, like any other, is going to forge her own path in life. I will do all I can to guide and equip her, but ultimately, Lina’s future is her own. I firmly believe that, through the grace of God, it’s going to be a beautiful one.

September 13, 2013 by Jolene

One Year

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.

August 19, 2013 by Jolene

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.

August 15, 2013 by Jolene

That sweet face – 11 months

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.

July 18, 2013 by Jolene

That sweet face – 10 months

(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:

Weighs about 17 lbs. and is wearing clothes for 6 – 12 months and size 3 diapers
Is on her fourth week of pretty severe feeding issues, finishing bottles only in her sleep and often refusing half or more of the bottle during waking feedings. The Vandy feeding therapist suspects reflux, and we have a call in to the pediatrician.
Is taking all-formula bottles and seems to enjoy solid foods, including small bits of finger foods like fresh fruits, baby puffs and bread. I usually have to feed them to her, but she is able to do some self-feeding.
Has started refusing to allow anyone but mom, dad or brother to hold, touch and interact with her. She may smile at other family members or strangers if mom or dad is holding her and she is well-rested and in a good mood, but if she’s tired, just a look at a face other than ours will set her wailing. And if anyone but us tries to hold her, watch out. The trauma escalates until mom or dad takes her back and calms her down again.
Sits unassisted for minutes at a time, playing with toys and turning to noises, although she tends to fuss about how much work it takes.
Loves to play on her tummy and can spin herself easily in any direction and wiggle forward a bit. Wants to crawl and tries to lift her torso but doesn’t yet have the coordination to get on all fours.
Babbles constantly, blowing LOTS of raspberries, making guttural sounds and now using some consonants (mostly “da-da-da” and the occasional “ba” or “ga”).
Is a good sleeper at home, in her familiar environment – napping 30 minutes to an hour in the morning and 2 – 3 hours in the afternoon, and sleeping at night from around 6:30 to 7:30 p.m. to 6 – 6:30 a.m., with us feeding her asleep twice in the evening. She does not nap well anywhere other than her own crib but does seem to do okay at night.
Enjoys being cuddled, played with and read to and is a happy, good-natured baby. She smiles all the time in response to us and giggles some when she is being tickled and played with. She adores her brother and has even started smiling at the dog lately. She really absorbs a lot about her environment and notices so much of what goes on around her.
Loves to play with her toes and chews constantly on anything she can reach. She still acts like she’s teething, but nothing new has broken through.

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.

July 11, 2013 by Jolene

In with a whimper, out with a hallelujah

What a week.

Jon has been away for work since 4 a.m. Monday. (Insert whimper.) He’ll be home tomorrow afternoon, and I would describe my status as hanging on by my fingernails. I owe an enormous thank you to my mother, who has made time in her busy schedule to take my son to Vacation Bible School three days this week while I ferry Lina to various appointments. It has made my life much easier than it could have been.

Lina went to Vandy Wednesday to get her loaner hearing aids. They were booked out so far for this appointment that by the time we got in, she had already outgrown one of the custom in-ear pieces. (The ear molds are obviously not loaner, but thankfully, Tennessee Early Intervention is paying for them, as they are not covered by insurance.) They took new ear impressions, sent us home with the one hearing aid that fit, and we’ll go back in 2-3 weeks to get everything set up for the full set of aids with updated molds (which will last for a couple months, until she again outgrows the ear pieces). However, since we’ve been home, I have been entirely unable to keep the hearing aid on my tiny girl. The loaner aid is bigger than newer models, and her little ear just doesn’t hold it in place. Another call to the audiologist this morning, and I’ve learned that wig/toupee tape can do the trick. We’ve ordered some next-day, so I’ll let you know how that goes. Let’s hope it works, because I’ve already barely rescued the thing from the dog once so far.

Pre-hearing aid

Post-hearing aid

This morning was Lina’s first physical therapy appointment. It was… not her best showing. She was exhausted, wailed the entire time and wanted nothing to do with anyone but mommy. But the good news is PT right now is really more for me, anyway. The therapist was able to identify some areas to focus on and suggest specific activities to do at home, which is pretty much the point. Lina loves to stand and extend and does not love to sit or move into a crawling position. She might like to walk before she crawls, which is not great, developmentally. So, we will be focusing on sitting and transferring to a crawling position.

I have a few new additions this week to my collection of parenting war stories. There’s the one about a three-year-old who decided, just as we were getting ready to walk out the door for Vacation Bible School, to smear himself, his clothes and the entire bathroom with bath soap. Or the one about the baby who rolled off our bed…again. (I know, I know. Please don’t call DCS on me.) Or the tale of a reliably potty-trained son who has decided to start intentionally peeing – and pooping, as of today – in his bed during nap time. I poured out my latest tale of woe to my dad today, and he suggested that we may be dealing with some jealousy issues as Lina’s needs begin to absorb more time and attention. I think he’s probably right. Figuring out how to deal with this is very much a work in progress.

There is also much to be thankful for this week. My kids are healthy and really an awful lot of fun. Corin and I have had funny conversations and good times reading stories and snuggling. He is so cuddly now, which I am making a point to appreciate while it lasts. Lina is making strides in her speech and motor skills almost daily, and her smiles truly light up my days. We have family coming into town tomorrow, and it should be a really fun weekend.

So, to finish out our week: Tomorrow is speech therapy at Vanderbilt, and then daddy will be home. Hallelujah.

April 26, 2013 by Jolene

One appointment at a time

Yesterday was Lina’s second visit to the Vanderbilt Pediatric Down Syndrome Clinic. The visit entails a series of appointments with professionals who all specialize in Down syndrome, beginning with the pediatrician and moving on to a nutritionist and speech/feeding, physical and occupational therapists. It makes for a very long morning, but these appointments have so far been infinitely helpful, and the professionals who see Lina at the clinic know their stuff and are incredibly encouraging and supportive.

So here’s the run-down of her visit yesterday:

1.) She is growing beautifully – in the 65th percentile for height and 67th for weight on the DS charts – and is making great strides in her development, staying right on track with her speech and physical milestones.

2.) They are recommending she begin speech and physical therapy, not because of any specific concerns, but in order to best support her continued progress. A Down syndrome diagnosis alone would not qualify her for speech therapy at this age, but she does qualify based on her diagnosis of conductive hearing loss. Her physical therapy appointments will be in-home with the early intervention therapist, but we are leaning towards taking her to Vanderbilt for speech, where they have therapists specializing in kids with hearing loss. Her initial speech evaluation at Vandy is scheduled for next Thursday.

3.) They drew blood to check Lina’s thyroid function, and it came back low. Hypothyroidism is very common with Down syndrome, and thankfully, it is easily treated with a synthetic hormone she will take for the rest of her life. Didn’t prevent me from having that moment: “Great. One more thing that will make her different and require management.” She has an appointment with a Vandy pediatric endocrinologist next month. Ultimately, I’m thankful to have the knowledge and be able to treat the problem quickly to avoid complications.

4.) She now also has an appointment scheduled for September with a pediatric ophthalmologist at Vanderbilt for her first vision check.

Clearly, we are transitioning from the early days, when little was needed besides normal infant care, to a time of increasing therapy and medical needs. It’s requiring some shoring up of my courage to face the growing number of appointments, recommended therapy exercises and other expanding needs for Lina. But this is my job as her mama (with lots of help from her daddy), and I am determined to do it with all the strength I have. I came away from yesterday’s appointment encouraged. Lina is doing great, and we have such fantastic resources available to us. I love that we have the opportunity to equip her for a happy, successful life. I have big dreams for her, and they start here and now, one appointment at a time.

A Dash of the Unexpected

a story unfolding

Tag Archives: down syndrome