It snowed today! Which happens once a year, it seems, and I don’t mind. The kids had a blast playing in it, though Ben was furious when I made him stop sitting in the puddles. And we realized in hindsight that of the 109 days Bennett was in the NICU and the weeks and weeks before hand when I was driving downtown for ultrasounds, it not once iced. Never. What a great blessing! It snowed the week of Christmas (the one week I think I didn’t have to make that drive.)

Anyway, posting a few pictures now.

The older two were playing Hide-n-go-seek this evening and Bennett really wanted to play. We heard him doing a great job of mimicking their words as they counted, “One, two, three…” and I looked over to see him holding his hands over his ears, trying to count! Watching them with their hands over their eyes, I’m sure wondering what they were doing. So we let him play along and the kids were hiding in dark rooms. Bennett found them quickly (and I was doing not well trying to find them!) and we caught on - he was hearing them. He would pause at the doorway and listen for them. I guess the kids realized what was happening because they started to “make sound effects” as Christopher put it. They would squeak or coo and Bennett would pause and then go tackle them. It was really fun to watch. They’re already finding ways to build on his strengths and include him.

Realizing we have YEARS worth of blooper photos, I decided to put them all up in an album! Our attempts at Christmas pictures of the kids from 2003 through 2006. Enjoy. OH, lots of new pictures also up in the November 2006 album under 2006.

I love when my friends start blogs! Though it makes me sad when they are started to share scary updates on tough situations rather than for fun family stuff. Good to hear for both reasons, just heart breaking to read the illness ones. Oh, but I guess that’s why we started ours, huh? But now it’s a happy one!

Emiline decided last night was a GREAT time to practice rolling over. All night long. But she can’t get herself to sleep on her back and she can’t get back onto her stomach so I spent the night getting up every hour or two to flip her back over like some beached whale or bug on its back. We’re both tired but SHE gets to nap now and I don’t. She’s 3 months old tomorrow.

This morning is our last warm day (73 degrees right now) since tomorrow a cold front blows through and we’re dropping 30 degrees. So we threw all the kids in the car before 8am and headed up to Denton for our holiday pictures. At any given point in time I make sure my kids’ wardrobes contain at least two coordinating outfits with each other. This year it’s red shirts & jeans, white shirts & khakis. Even the baby has them (khakis in her size are so cute.) When I shop for their clothes I keep this in mind, how funny is that? I think it’s ingrained in our heads as Thaden children - coordinate the outfits for pictures!! Kit made up our card and yes, this year, I’m sending it on e-mail. I decided with four kids I am giving myself a break and next year I’ll mail a Christmas letter but this year - I’m just too tired.

Bennett had OT yesterday and we’re thrilled with his progress in almost every way, he’s catching up in leaps and bounds (quite literally.) But we’re seeing the vision causing more difficulties and that’s hard to see… bad pun. He’s tripping over things on the floor, stumbling a little bit, having to really squint and getting super close to toys and screens and books to try and see clearly. It hurts to see him struggle, but we’re trying our best to treat him like a normal toddler but still have the kids be sensitive to it (not yelling when he gets close to the tv, keeping toys off the floor.) Bennett is going to do amazing things in this life regardless of whatever hurdles he has left to jump.

We have some pretty incredible kids.

New quotes up to the right in “Inspirational Quotes” from the October General Conference. Slowly working my way through the talks.

Emiline outgrew her bassinet. She’s too long for it and kept scooting up to the top and smooshing her head. And this is with the head raised! So we set up the crib and can you believe it?? She slept in the crib last night. A child of ours FINALLY slept in that crib we got way back in 2001 as a shower present for Christopher (who never slept in it.)

I let Emiline sleep on her stomach. I know, I know, SIDS risk and I got the whole lecture from the doctor. But I still let her do it, on a firm mattress, head raised. It helps with the reflux and though I’ve been tempted to hook her up to Ben’s monitor to make sure she’s doing okay, I have resisted the urge. But I do not encourage nor endorse anyone else following in my risky ways, put your babies to sleep on their backs.

SO, that leads into this… She wakes me up during the night now with sucking on her fingers, she’s so loud. She doesn’t cry or fuss to let me know she’s hungry, she just sucks on her fingers. Wakes me up, I stumble across the room to get her, she nurses frantically for about 5 minutes then passes out and I lay her down and fall back into bed. It’s a nice system. The first time she got me up last night I discovered her laying on her back with this wide eyed expression, like a turtle that had been flipped and wasn’t sure how to get back over. I saw her flip this morning when I went to get her up. So we did some tummy time this morning on the floor and yep, she rolled over again. Christopher was so proud of her, he said, “She’s moving like a toddler!”

I thought Christopher was on the move and he didn’t roll over until 4 months - Emy isn’t even 3 months yet. She may be quiet, and she may sleep, but she’s feisty under that angelic exterior.

There are moments when I realize I’m not over the preemie thing (which I know, it’s just funny how things come up) - people tease first time parents about being clingy and coddling their kids. I’m worse now than I was before. It doesn’t even occur to me to offer to let other people hold Emiline. At church people will ask to hold her and I cringe, I start frantically thinking of ways to politely say no, I scurry from the room. Even with friends I don’t think to offer to let them hold her - a close friend was over and Kit asked if she wanted to hold Emiline. She said yes, she was eager to. Why had I not offered?? Friends that I love dearly, that I trust with my children, that have cared for my children, that have literally stood by my in the hospital and cried with me. But I am so beyond the point of paranoid on some subconscious level that these people that I KNOW I trust, I don’t think to let them hold my child. I’ll be chasing down another kid, pulling Bennett off the table with Emy in the other hand and my friends will look at me and ask, “Would you like me to take Emy?” Yes, of course. I just don’t think to ask, “Would you hold my baby?” It almost feels like I’m asking, “Would you mind holding my arm for awhile? Here, just let me detach it.” Emy’s always in my arms or Kit’s arms. And the other parent is usually holding Bennett or pulling him off a major appliance. I don’t want to let my babies go, even to someone I love and trust. Why is that? Have I not recovered from having to leave Bennett with someone else for so long?

And beyond someone holding my baby, I have a hard time letting Bennett get far away. He’s in the backyard playing now with the big kids and it’s taking everything in me to not wrap Emy up and go follow him around the yard. Bennett’s fine, he’s having a blast. But I can’t see him every moment and it feels weird. He’s 18 months adjusted age and I could put him in nursery (if it wasn’t RSV season) and I tell people that’s why we don’t put him in - doctor’s orders. It’s true. But the idea of putting him in nursery? Leaving him with someone else to take care of him, someone that doesn’t know him, someone that has no idea what he’s been through and how fragile he still is in my head (because I know he’s not fragile in reality, just in my head…) That idea TERRIFIES me to no end. I need to get over it before spring when he can go into nursery. I do NOT want to chase him through life trying to protect him, I know he’s strong and capable and wants to explore the world and I don’t want to stifle that in him. But WOW, it’s hard to let go of him. Hard to relax and believe he’s going to be okay.

Heard around our place today:

“Dee-dih” (cheestick) from the 1 year old.
“Can I have some pumpkin pie? But I think I should eat some carrots first.” From the 5 year old.
“Gay-suh-dee-uh” (quesadilla) from the 3 year old.
“Sure, but finish your pie first.” From MOM. Huh?? Pie first?

We confused Moira, she thought it was Christmas today. We ate turkey, hung stockings (I’m working on Emy’s, we’ll post pictures when it’s done) and they got toys - this morning I took the older two with me shopping and let Christopher use his birthday gift card. He chose Barrel of Monkeys and Jenga & a spinning lighted top and they’ve been playing with them ALL DAY LONG. So Mo wanted to know why there wasn’t anything in her stocking. Not sure what we’re going to do about the tree - we’ve never had a climber at Christmas time, and we’re guessing it will take Bennett about 90 seconds to tip it. I pulled out just the non-breakable ornaments for this year.

Last year Bennett was just coming off oxygen and starting solids. This year he attacked the turkey with gusto. Moira has grown in leaps and bounds with her speech and dancing talent. Christopher has continued to amuse and amaze us with his many, many questions. And little Miss Emiline arrived. We have been blessed beyond our wildest dreams.

We are especially grateful for our healthy children, our family & our friends that have become our family - you have supported us and encouraged us through the last two years. We would not have survived without you.

Happy Thanksgiving from all our little turkeys!!

By 7:28 am we had rolls rising, pecan pie baking, pumpkin pie (from real pumpkin Becky gave us) ready to go in… by 9 am we had homemade cranberry sauce chilling, lessons done, and Kit on his way to work. I love productive mornings! Because then the rest of the day can fall apart and it’s okay, we’ve already gotten a ton done… I guess this is a benefit of the kids all being up before 6 am.

Then I got a visit from a wonderful friend & her little girl, a surprise call from one of my favorite people in the whole world to tell me she’s on her way to town to visit, and a phone call with another great friend.

The kids have, for the most part, been sweet & cooperative & adorable. We read stories and Bennett was copying the older kids in saying sounds. Yesterday he said balloon several times (not exactly, but he got both ‘b’ sounds in there.)

Kit and I were sitting on the floor kissing and Bennett managed to squeeze in between us and start making kissy sounds! He cracks me up…

We hope your Thanksgiving is wonderful!

We found a mother’s helper! She drives her own car, she’s home schooled (free better hours), she has siblings Christopher & Bennett’s age, an older sibling that was a preemie (born same weight as Bennett) and the kids adore her. AND she was happy to play tag over and over and over again. I think they gave her quite a work out. I was able to clean and cuddle Emy and read and talk with a friend and bake cookies and banana bread and do dishes. It was so unreal, and wonderful. Kit got in hours at the office, I got stuff done around home. Just a couple hours and I feel like a new woman. And best of all, she’s coming back every week! For the next couple months! (Assuming my kids don’t wear her out by then.) Can you tell I’m excited? Just a little bit? I know have a list of all the stuff I can do while she’s here. Clean the garage. Scrapbook. Read. NAP. Bake and cook my meals for the week. I cannot tell you how wonderful this feels, like this totally unnecessary but absolutely thrilling luxury. I am loving this respite program!

I just wrote this long post and Bennett deleted it.

But happy news, after a long talk w/his pediatric ophthamologist’s assistant, we have hope that by putting him in glasses now we’re ensuring his vision will remain correctable to at least 20/40 (legal for license and comfortable reading.) So no no matter how bad his vision may get, so long as the glasses can correct it then he’s okay. I asked why would the glasses NOT get to him that clarity and she said if some other issue develops, or if we didn’t get him into glasses until later in life. The way she explained is that until about age 10 or 11 the brain is developing the visual part, sort of the potential for how clear he can see. His eyesight may deteriorate over time, until about 16 years she said he’ll be having growth spurts and his vision will keep changing (more dramatically than later in life.) So the prescription will keep changing after 11 but potential will be pretty set for how much glasses will help. If he didn’t get glasses until later, his brain would have developed believing fuzzy was normal and even w/glasses, he would not get to 20/20 or 20/40. So that’s why glasses now - we’re trying to train his brain to see the world clearly so that no matter what his eyes may do over time, his brain will be able to see with glasses enough to get a clear message across. Does that make sense?

The Retina Foundation will be able to give us some idea of what he’s seeing w/glasses on, they’ll run additional tests. I’ve been flooded w/emails from other preemie parents after asking about this on-line, getting suggested toys, books, websites, schools, programs, questions to ask, testing to request, etc. An ECI director has been sending me links to local programs, an optometrist has been giving me questions to ask, a blind mother has been sharing what it was like to grow up visually impaired. It’s been WONDERFUL to hear from all of them and feel like we’re forming a game plan and heading in the right direction.

So we know more where we are, and what the distance is between here and facing issues like not being able to read w/out extra devices, or not being legal for a license, or being legally blind. It’s good to know that so long as those glasses work, there is a big distance between here and there. Kit says he still plans to learn braille because it’s intriguing, but the doctor’s office says, “You’re not there yet.” And that’s great.

Different topic, Bennett was up and down all night. Some nights he does great, others it’s a nightmare. But an awake nightmare. So this morning Kit called Children’s Medical Center because we heard they have a sleep disorders clinic (with a several month long waiting list.) We just hoped for info but they gave us an appointment for next week! Until we read up on it, we had not considered that Bennett’s lungs may be contributing to his sleeplessness. The doctor is a sleep disorders specialist and pulmonologist. Oh… whoops. Did we miss something significant?? Now I’m wondering if we’ll find something related to his lungs. Hopefully we’ll get some answers and he’ll start sleeping better.

Telling on myself, but first we have to set the wayback machine to 1988.

In school, the GT kids had to take volunteer hours helping other kids. In school peer tutoring, classroom helpers, and that sort of thing. It’s a good idea. Helps to give kids perspective. My job was to help out in the special ed classes. These kids were great. Lots of personality, full of life, and in retrospect, they freaked the heck out of me: I was not emotionally prepared to deal with kids who had severe physical and mental limitations as a kid myself. We’re talking about kids who ran the gamut from severe Downs to wheelchair-bound MS sufferers to everything in between. This wasn’t an immediate issue for me. In fact, at the time, I enjoyed this time at school as an in-class helper for these kids more than anything else I was doing at the time. It turns out my issues were quite a slow burn.

Dealing with these kids wasn’t easy. By the time I was an adult, the fear of having a child with severe disabilities was so powerful that, before I met Heidi, I was pretty sure I didn’t even want to have children for fear of the risk of disability. Heidi came along and all that went out the window. Mostly.

So, Christopher and Moira required therapy services to get their speech rolling. Mo still needs help, but she’s improving by leaps every week. Most likely she’ll develop her coping strategies and start really speaking before too long. A few more years, likely, but she’s developing out of her apraxia and sensory integration issues. Notice I didn’t use the word, “growing”. This is not going away on its own. Mo is struggling every day to work these things out, and her parents are helping her as much as we can.

The elephant in our room is 20 lbs.¹

I never worried about Bennett being born with massive disabilities. Some of his caregivers didn’t worry much about him being born at all. He was expected to not survive and it was very much a surprise when he did. Not for me, really. I had a great deal of reason to have faith in his eventual birth and homecoming. Even when they announced his brain bleed to us. The brain is ridiculously complex, and his had more to grow. Most, if not all, of the damage of that brain bleed was mitigated in the NICU by our little elephant.

Even through all that I had the whatif gremlin dancing on my shoulder, telling me that I didn’t have enough energy or fortitude to deal with a severe disability, so it’s a lucky thing that Bennett is pulling through everything. Not denial. Denial is the refusal to accept reality. I could accept the reality that nothing was really wrong with Bennett. This as Bennett is climbing on top of the table to get something. “Help, Nana!” he says as he pulls me away from typing this.

Now we find out that the reality has shifted a little bit. Bennett’s eyesight is pretty terrible. He needs his glasses more than I do, and that’s saying quite a bit. He can’t focus clearly on anything beyond a few inches in front of his face, and the situation is so fragile that with any growth spurt, his eyesight can get dramatically worse. There’s a strong chance that he’ll be legally blind by the time he hits puberty. That is, he won’t be able to see more than a few feet in front of him at best even with corrective lenses. This is the reality his ophthalmologist is preparing us for.

And you know what? It isn’t that terrible to anticipate. I guess the NICU helped to smother my gremlin. Heidi and I are preparing ourselves to learn Braille, for instance. We’re lining up sources for enlarged type books. Well, honestly, Heidi, bless her, is doing most of the foot work here, but we’re preparing for this as a family in any case.

Not that we don’t hope for more miracles, though a strong part of me says that we’ve had our fair share of miracles, and this is simply a trial Bennett was meant to face. So, what we hope for is that his eyes won’t get any worse. That they stay stable even through puberty, or, if not stable, at least his vision will remain correctable. Coke-bottle lenses are just peachy. The added mass will make them harder to break.

And I know that this isn’t the worst thing in the world. That Bennett faced the risk of so much more. That one of the other families that we became relatively close to in the NICU has a boy who’ll need his diapers changed for the rest of his natural life — and they’re grateful for it. There’s a real example of resolve for you. One that I could emulate, but I’m extremely grateful that I won’t have to. Bad eyes aren’t so rough.

As a friend mentioned: More music, less archery.

Bennett’s a strong kid. He’ll be better for anything he overcomes. And so will his family.

Later, perhaps, we’ll share some lightbulb moments we discovered while learning more about Braille.

1. For instance, Bennett took far more sedative to calm him in the hospital than a boy his size should. We attribute that to the strength of his constitution. That and he’s part elephant. back

Kit and I are having dinner, trying to ignore the four children running around us, fantasizing it’s just the two of us and our Chipotle burrito,attempting to carry on some conversation as if we were on a date…

I notice Christopher is standing next to me with his hand awkwardly placed on the table. I look at him and he heaves a deep sigh, “I guess you should know… I marked on the table,” and lifts his hand to reveal a few black lines. I had to laugh at how he announced it, “I guess you should know.”

Bennett said two sentences today!! “Hi, you!” to Kit and “Help, Mama!” and signed help while he said it. HOORAY!

Now that we know the extent of the vision issues, we’re noticing things more - how he puts his face inches from the computer screen to watch a movie of himself, or gets really close to book pages. It hurts to watch. We talked with the older kids about it today. How all of us have strengths, but we also have areas we need help. They told us some of theirs, and said they think Bennett’s strength is climbing (Because he’s a monkey! says Critter) but how Ben needs help with seeing. We talked about ways they can help him - keeping toys off the floor so he doesn’t trip, describing things they see, not getting upset when he stands between them and the television. We hope by describing it as this - something Bennett needs help with, just like they need help with things - that they’ll grow up wanting to help and not seeing it as a disability for him. Just a different challenge from theirs.

Today I packed up all the kids and met up with Kit at his office. They have an enormous staircase and Mo got about halfway up crawling, then turned to look back. I was walking up with Bennett (holding one hand and he was taking the steps like a pro, hooray!) and when Mo looked back, she panicked. I passed Bennett off to Kit and tried to calm Moira down but her reaction would best be described as a 3 year old panic attack. She was shaking with fear, I could feel her heart thumping in her tiny chest, she was clutching me like her life dependent on it. We sat on the steps for about five minutes while I talked her through it and she worked up the courage to finish going up the steps. I was so proud of her, and so sad at the same time. Coming back down she walked them just holding my hand and then started cheering and yelling, “Daddy, I did it!” It’s hard to see her struggling. I’m grateful for all we’re learning about SPD because in the past when she was scared of stairs I just scooped her up and carried her. Now I know that to me it may just be stairs but her little mind perceives it as the Eiffel Tower. And how her confidence grows when she conquers her challenge is exciting.

I’m grateful for the kind, wise, patient friends that have been talking with me over the last two days as I process Bennett’s eye news. One pointed out that his vision is going but his other senses will compensate, and I forgot about that. Another reminded me that we get to define his perspective on this, at least for now, and we can help him look at this not as a handicap but simply as a different way of interacting with the world. And I’m encouraged by the preemie parents from my on-line groups that are in the same boat, many with more severe cases, and are offering resources and suggestions and support. I have to say, this internet preemie group is a pretty cool resource. I’ve got an optometrist and an early childhood intervention program director both emailing me with tips. What a blessing! They’re giving me questions to go ask his doctors, too. And they’re giving the gentle reminder that it’s okay to grieve, so long as we don’t let the grief stop us from doing everything in our power to face this newest challenge and help Bennett…

Bennett is loved, and he loves, and he’s happy. And I’m trying to remember that everything else is frosting.

First, good. Mo had an adaptive PE assessment today to see if she needs gross motor work (she showed delays in February) and the preliminary report is that she doesn’t! Woo-hoo! They said she did great, not only was she on target but showed skills not expected until 5 or 6 years of age. (Her receptive speech also showed her at about a 5.5 year old level so I’m beyond thrilled.) I think having a big brother has helped her enormously, and the horseback riding has been a huge perk. The only sticky point being her receptive is so high but her expressive is so low that she’s getting frustrated. Sometimes she’ll say a word over and over while we try to guess what she’s saying, asking for her to point or show us or sign, and she gets louder and louder. It reminds me of some poor tourist starting to yell at the locals in an attempt to get her point across. Or maybe we’re the clueless tourist and she’s the local?

I mostly ignored the kids today while researching and freaking out about Bennett’s news and the kids were being cute, playing “tortoise & hare” and racing around the house. Then Mo came out of the room yelling and said she was scared, Christopher came out to explain Mo was the “ockeologist” and was digging up bones and he was the bones and he scared her. No idea where he learned about archeologists, probably from some show on PBS he watched while I was ignoring him some other day…

Bennett had an eye exam today and his bad vision has gotten really bad, and pretty fast. In the last six months. Not content to get one opinion on what this meant, I went ahead and gathered three professional opinions and the consensus is he can see clearly less than a foot in front of his face. And it’s only going to get worse. I’ve got a call in to the Retina Foundation of the Southwest and a follow up w/his specialist in six months and new glasses have been ordered. We knew this was coming but I guess we’ve dodged so many bullets that I hoped, assumed, something - that we would dodge this one as well. I feel like I can’t complain, all things considered, but right now this is too painful and fresh and frightening and unknown to really put into words.