The End

Heeeeelllllllooooooo….. anyone out there?

My dad, never one to beat around the bush, sent me an email today that said, and I quote, “Last blog entry was Feb 18. Should I take it off my favorites list as an abandoned site?  Love, Dad.”  And while I had no idea that it had been THAT long, I will admit that I have thought about the blog here and there, but have had much less interest in updating it. My kiddo is still equal parts adorable and hysterical (and sometimes obnoxious and frustrating, if I’m honest) – but he’s getting older, and I think a little more about his privacy and how he’ll feel about the things I write than I used to. He’s had some great accomplishments and fun over the last year – learning how to ride a bike (no training wheels!), reading like a champ (misspelled 1 out of 35 sight words in his first 2nd grade evaluation), enjoying fun trips (like celebrating his 8th birthday in New Orleans!), losing more teeth, growing taller and taller and taller and taller… and yet I haven’t been inclined to update the blog since February. So while it makes me a little sad to say, I think this is the end of The Charlie Update.

But before I sign off, I want to say how wonderful it has been to have people sharing in his life over the last 8 years. What started as a way to keep our family and friends updated on the ups and downs of those terrifying early days turned into a better and more detailed “baby book” than I ever could have imagined. To this day, when we see a new doctor or therapist that asks when Charlie first walked, or talked, or whatever, I come here and start paging through the posts until I find the one chronicling the event in question. And throughout the posts (and years), I loved knowing that so many people were rooting for our little guy, and enjoyed reading the comments and well wishes that you sent our way.

For the few of you that have made it to this bitter end, thanks for hanging in there and supporting us all the way!

Before I go, here’s one last photo of Charlie, from this past weekend when we were tile shopping. Charlie manages to find the fun wherever he goes, even in a tile warehouse, where he practiced his shower skills in one of their vignettes!

And one of my handsome boy on his first day of SECOND grade!

Love you all!  Thanks for reading!

Prematurity Strikes Again

About a month ago, Charlie’s school contacted us about re-evaluating him as a part of the Individualized Education Plan (or IEP) process. To get any special education services through the school system (no matter what kind of services), each kid has to have an IEP. It outlines the learning needs that the child has, what services the school will provide, and how they will measure the success of those services. Once you have the IEP documented and signed (by teachers, special ed providers, principal or vice principal, parents, and pretty much anyone else that has anything to do with the process), the school is bound by law to give the services that have been identified in the IEP. So it’s a great and important thing.

The IEP has to be reviewed at minimum once a year. But there also has to be a re-evaluation of needs every three years – basically to determine whether the child still qualifies for services. And since Charlie last had an evaluation when he was in public preschool 3 years ago, we’re just starting his re-evaluation process.

Unbeknownst to me, the beginning of that process (at least in our school district) is a vision and hearing test. Now due to Charlie’s prematurity and the retinopathy he experienced due to the oxygen he got while in the NICU, we are regular visitors to the pediatric ophthalmologist. His last visit was late last year, where the doctor diagnosed some minor color deficiency (new PC terminology for color blindness?) but otherwise, confirmed we were still okay with not patching his weaker eye because he was seeing fine. Fast forward to last month, when we received the results of his vision and hearing tests from the school, to find he failed both. One of his eyes measured fine, but the other was problematic, and he was unable to hear certain sounds. GEEZ.

Today, George took the kiddo to our pediatrician, to get a second opinion (or third, I guess, in the case of his vision).  They said his vision is not 20/20, but probably more like 20/30 (not catastrophic – he certainly sees far better than either of this parents at this point!) and he can’t hear certain high-pitched sounds. The next step is to confirm the vision measurements with the ophthalmologist and to head to the audiologist.

At the end of the day, this kid couldn’t be any more perfect in my eyes. Well, maybe if he could quit biting his nails and talking back, and if he would pick up after himself without constant reminders… but you know what I mean. In the grand scheme of things, Charlie is exactly what I never knew I always wanted. These issues are minor. Glasses aren’t a big deal to me since I wear them every day (and Charlie has actually asked for his own glasses and glasses case for his birthday – which he may end up getting!). If he can’t hear high pitched sounds, I’m not sure what impact that will have on his daily life – until he has an infant who screetches like he used to, in which case it will be a total blessing.

But I will admit, it does feel like we are always dealing with something at our house! Small, mostly inconsequential somethings most of the time, thank goodness, but something nonetheless. And the most amazing thing about these forever somethings is that they’re all related to prematurity! We knew about the vision issues right from the start; in fact, in the past, before they knew that giving babies 100% oxygen could have detrimental impacts on vision, a lot of preemies went blind. I had no idea it could impact hearing, though, until I did a little googling. Apparently premature birth is a risk factor for hearing impairment. In fact, for preterm infants, the incidence of high frequency hearing loss is from .8 to 7%, whereas it is from .1 to .3% in full term babies. And being on a ventilator and/or receiving oxygen is a common cause of sensorineural (inner ear) hearing loss. So as usual, the earlier the baby is, the higher the risk. Surprise!

At this point, if Charlie gets diagnosed with an issue that can’t be tied back to his premature birth, I will be shocked. Someday I will try to put together a laundry list of the complications and side effects of his arriving almost 4 months early, so we can again marvel at just how amazing he is to have dealt with everything he’s faced. Until then, we’ll just keep dealing with what prematurity throws at us, and feeling grateful that these minor complications and issues are just that.

Winter Days

It’s been a while (again) – writing in the blog has taken a hit due to how tired I’ve been lately!  I think it’s a combination of how early it gets dark this time of year, how early I get up on my morning gym days, and how busy the routine is from between 6 pm, when I get home, and 8:30/9, when we tuck Charlie into bed. However, yesterday Charlie got sent home from school early (missing his school Valentine party, to his dismay) and George took him right to the pediatrician, where he was diagnosed with strep. I was in NYC Thurs/yesterday, and when I got home around 7:45, he was already asleep in our bed, and hot to the touch. Poor little guy. So long story short, we canceled his swimming lesson this morning, so we’re not rushing around trying to start our day. Instead, we’re curled up under blankets on the couch with the fire going, and I have time to write while he watches morning cartoons. While I’m not happy that he is sick, it is nice to have a lazy, quiet morning at home! He’s already feeling so much better, which is the beauty of strep – those antibiotics kick in so quickly!

We are supposed to have a VERY cold weekend this weekend, but with any luck, no snow. During the 2nd half of January, I think Charlie had a total of 4 days of school in 3 weeks straight, thanks to MLK holiday, a couple of teacher workdays, and at least 7 days straight of weather-related school closings. It was far less stressful to me this year since George isn’t working right now, so my work wasn’t complicated by having to entertain a kid in between conference calls! And the big snow weekend was so fun – we got more snow than I remember having in a while, and being home and not working meant we could just huddle up and enjoy it. We have school friends all around, so Charlie could sled with his buddies some as well. Charlie really loved the snow, building snow mountains, and sledding.

 The snow was fun while it lasted, but we were ALL ready for school to start again!

Charlie is really at a great age right now. He is really reading, which is so fun. The bug hasn’t caught him yet (he’d still rather be read to, and isn’t inclined to pick up a book and read on is own) but we have him read a book to us almost every night, and he’s come such a long way since the beginning of school. He still loves numbers, and in his weekly homework packet, the math page is the one he always wants to do first. Right now, he’s making “math tests” while he watches tv.

He is the sweetest kid – he is still at the age where he thinks we are great most of the time, and tells me regularly that I am “the best mom he ever had” (true, but not much competition there) and we are “the best parents in the world” (not even close, but it’s nice that he thinks so!). The social stuff at school continues to be challenging for him – it’s hard to pinpoint the specifics, but he acts a little younger than your average 7 year old and doesn’t easily pick up on social queues. But kids are still mostly nice to each other at this age, so he’s generally happy about things. I would be lying if I said I didn’t stay awake some nights worrying about when kids start to be meaner to each other – my kid is a tender heart, and I don’t like to think about him getting picked on or bullied. But I have to remind myself to take it one day at a time, and make sure I’m listening to him and talking to him, and not overly worrying about things that aren’t happening now. I can’t predict the future, and with any luck, I’m worrying about nothing.

Otherwise, life is good here – especially at the start of a long weekend!  Happy Valentines Day, and stay warm!

The Christmas Spirit

We are in full-on Christmas excitement mode at our house, as anyone would expect.  The tree has been up for a little over a week, our Elf Hal has been making his way around the house, surprising Charlie with his choice of spots (and luckily only forgetting to move once!), and the advent calendars are getting lots of attention.  We’ve been to see Santa, and Charlie was all smiles about sitting on his lap and rattling off his (luckily short) list of things he is hoping to receive.  And he donned his elf hat this weekend to scooter around the neighborhood, leaving goodies on the doorsteps of our friends and neighbors.

This morning, as I was getting ready for work, Charlie popped out of bed, and the first thing he said was, Tomorrow is Christmas Eve!  I love seeing him so excited – Christmas is truly magical when seen through a child’s eyes. But I have also been struggling with trying to inject some of the spirit of giving into his understanding of the season. It is difficult to impress upon him how fortunate we are, and that part of Christmas is the joy of taking care of others. He loved delivering treats to the neighbors so I guess that’s something, but considering I’m the one making them AND they’re partially chocolate, which he doesn’t even like… there’s not much sacrifice in it for him.

So we’ve been talking about giving things to people who don’t have much at all – and it was a hard concept for him to embrace. He’s frugal. He has a little money in his wallet, and he doesn’t want to give it away. I understand that feeling! We did a toy clean-out, and really encouraged him not to hang onto the gently worn things that he doesn’t even use – and that was pretty successful. But yesterday, he pulled his only $20 bill out of his wallet and gave it to me.  We went to the Samaritan’s Purse website and he picked out a couple of things – 7 days worth of meals for a child in another country (for only $7!), as well as some chicks – to buy with his own money, for someone else. It’s hard because he wants to see the child we’re helping.  But even though parting with his money was very hard, he was able to talk himself into it. Maybe Santa will be impressed enough to leave a couple of bucks in his stocking! And maybe next year, we’ll take it a step further and do some in-person work/giving, so he can appreciate it even more.

I love this boy and his sweet heart (here, on the metro coming back from our Santa visit)!

 

Crazy Luck

November is prematurity awareness month – and I know, you’ve heard it before from me. You know our story, you know our boy, and I probably should give the focus on prematurity a rest now that this kid is big and healthy. But here’s what I know: stupid spellcheck doesn’t even recognize “prematurity” as a word, when it defines the beginning of my boy’s life. Lots of people don’t even know about what it means to have a premature baby. I didn’t know either, before I had Charlie.

If you had told me that I, a healthy person with not a single complication in my first 25 weeks of pregnancy, would have a baby before I even reached my third trimester – I’m not sure I would have believed it. And yet, it happens, WAY more than it should. Yes, it sometimes happens to moms who don’t have access to good prenatal care, and/or don’t take care of themselves the way they should. But it also happens to moms who do take care of themselves, who get prenatal care, who don’t smoke or do drugs or engage in dangerous activity… moms like me.

In this day and age, where doctors can predict, know, and treat so much, the miracles of fertility, pregnancy and prematurity are still mysteries in a lot of ways. In our case, we still don’t know for sure why Charlie came early – and why there were no advance signs that gave the doctors any chance to prepare him for an untimely arrival. My “incompetent cervix” (worst medical term ever, by the way) was part of the problem, but the fact that my body was contracting and ready to birth a baby at just 25 weeks was another, totally unexplained, part of the problem. And between the time I walked to the hospital that morning and he was born that afternoon, there just wasn’t enough time for them to do anything to keep him inside a few more precious days. Those days really are precious, too. That early in gestation, every week increases the chances of survival a lot, and likely reduces the number of complications the baby is going to face. Unfortunately for us, by the time they knew I was in labor, there was no stopping it or even slowing it down.

Our story has a happy ending – at least at this point!  Our boy is happy, a total handful, and most importantly, healthy – for the most part, although the hacking cough he has right now might indicate otherwise. Today I picked him up from school, and he and his best buddy (another Charlie) wanted to run wild on the playground a bit before heading home – all that time sitting in a classroom is hard on a first grade wild man!  So they ran – and then they both planted themselves on a bench and coughed and coughed, like little old men. The common thread? Both are preemies. Coincidence that they’re the ones hacking when the other kids are running non-stop?  I think not. I think these former preemie lungs seem to be more impacted by this unusually warm, moist fall we’re having – and by pollen-heavy springs, and pollution, etc. Though our boy grows and grows, his premature past still rears its ugly face here and there.

I recognize that we are CRAZY lucky to have such a vibrant, busy, healthy boy. I think most moms probably reflect all the time on their kids’ successes and strengths and feel pride and joy. But for me, there’s the added reminder of what could have been. I can guarantee you, I take none of these skills and accomplishments for granted. I think ALL THE TIME about the tears I shed over that tiny, struggling baby in the isolette, and how the life I’m living now was the stuff of daydreams back then. And I will never forget where we started, and just how far he’s come.

So that’s it, that’s why this month is important to me. Prematurity awareness is important because it helps people realize that it really matters to support the March of Dimes, which works constantly to reduce the numbers of premature babies born every day. And it’s important because it reminds me to be oh so grateful for how far we’ve come, and how many doctors and nurses and therapists and scientists and family and friends have helped us get here.

Thanks, as always, for reading!

  

Halloween

It’s Halloween season, and my flight-loving boy picked out a pilot costume. On Friday, he got to dress up for his school’s Halloween Fun Night, and I couldn’t believe how adorable and grown-up he looked.

Halloween Fun Night turned out to be hot, crowded, NOISY, crazy, and not something he wanted to do for very long (to my delight), but we did find his teacher, which made him very happy. He LOVES her. One morning last week, he made a construction paper card for her before school, with “I love Ms. Massey” and a picture he drew of the two of them. Considering how little he enjoys drawing that kind of thing (maps and numbers are his specialty, not people), it meant a lot that he decided to do that all on his own.

Today, we had a friend come take some professional photos, and Charlie was, well, kind of a pain. My kid who adores attention felt too much pressure to smile and pose, and his reaction was to act pretty bratty. We used to see that kind of behavior a lot when he was uncomfortable in situations, but it’s been a while since it has come out. I was not happy with the way he was acting, but it did make me appreciate that we don’t see that kind of behavior very often anymore!

“We” carved our pumpkin this afternoon. Charlie kept saying he wanted to help – that is, until he saw the pumpkin guts that I was scooping out, and decided he wanted nothing to do with it. Oh well!

School is still going well. Charlie is reading like a champ, and while he complains about doing homework, he’s really good at school work. His handwriting is improving so much with all the practice too. We have a parent-teacher conference on Wed, so I’m interested to hear what the teacher has to say, but I’m guessing it will be mostly good!

Our Fairy Tale Life

Once upon a time, not so long ago, there was a mother who was very concerned about the changes her favorite little boy was about to endure. He was preparing to start a new school and new schedule (long days, bigger class, loud cafeteria, more independence), as well as parting ways with his physical and occupational therapists he loved, not to mention his nanny that had been with him since he was 9 months old. He was nervous – and his mama was NERVOUS (to the point of tears if she thought too much about it). She envisioned tears every night and lots of, “but I don’t want to go to school!” She wasn’t sure at all that the neighborhood school was going to be the right place for him, or that he was ready for this big next step.

Well, it turns out that story in my head was just that, a story. Other than in anticipation of his first day, Charlie hasn’t cried once about school. He is excited to go to school every day, he’s reading so much better already, he handles the lunch room (including going through the lunch line and buying lunch now and then!) like a champ, he’s making new friends and bringing home gold stars from his teacher. While he doesn’t get to ride the bus (huge disappointment that we live too close – he asked if we could move farther away so he could ride the bus to school), he gets to scooter to and from school almost every day, with his dad or me on the days here and there that I work from home. On Monday, his grandparents even walked him to school! He adores his teacher, and the assistant, and the social worker who is working with him, and the principal. I couldn’t be more relieved that it is going so well. I’m sure he will have low points sometimes and it won’t all be as easy as the first month has been, but boy, am I happy that the first month has been so great! And I am excited to see what’s to come.

On a funny note, I did get my first call from the school health office today, reporting that Charlie had “bumped his head in the bathroom” and had to sit in the nurse’s office with ice on his head for 20 minutes. When George went to pick Charlie up at school today, he asked for a dramatic re-enactment of the head bump, since neither of us was quite sure how that could happen. Apparently, he managed to walk into the door frame when entering the bathroom, which probably just means he was not paying attention to where he was going (not a new problem).

Also, he came home today saying that some kids in his class were in trouble for saying “inappropriate things” in the bathroom. Luckily he wasn’t in the bathroom then, because he seems to have no idea what they actually said, but he said his teacher was going to be calling some parents tonight. I’m glad not to be on that list!

We are so proud of our brave, smart boy.

1 Week In

We are a little more than a week into Charlie’s new school, and he’s having a great time!  On Monday, when I got home from work and asked him how his day was, he said, “Great! Great! Great! Great! I love staying until 4!”  That part was especially surprising, since he was saying leading up to school that the part that bothered him most was that he would be there until 4 p.m. He’s got a good buddy in his class, which helps, but I also think he’s really excited about all the new things they’re learning and doing. Tomorrow they actually have computer lab!

George and I met with his teacher, assistant, and school psychologist this morning, and they were very positive about his start, and looking forward to working with him. His teacher has him sitting right at the front of the room, which I think helps a lot. She said he asks for hugs now and then, which I love – if that helps him with any anxiety, good for him for asking for what he needs! I love that he can walk to and from school with his dad (or me, if I’m working from home or off for the day) and that a lot of days, he and his dad head to the playground before coming home. He’s tired after a day of school, but not too tired to play a little more! I thought he’d miss afternoon naps more than he does – although he said the first day that he wished they had nap time, every day since he’s been wide awake until his 8:30 bedtime. He does fall asleep REALLY quickly after that, though.

Today, I worked from home, so I got to walk and pick Charlie up from school. When he came out, he told me that one of the girls in his class had been hugging him a lot today!  He wasn’t complaining about it, just commenting with a smile on his face. His friend Charlie said, “At first she wanted to marry me, but now she says she wants to marry him because I’m pretty but he’s prettier!  She really should make up her mind!”  Hysterical. Apparently the first grade girls (or at least this one) are fast movers!

I’m really proud of Charlie for how well he has adjusted to his new school, and how much he’s growing up. Yesterday, we also went for a haircut, and for the first time, he let the lady wash his hair in the sink and blow it dry when she was done cutting, and Charlie smiled the whole time. He’s suddenly handling lots of things he struggled with before, and it is a very pleasant surprise!

Day 1 of First Grade in the Books

Last night, I was sitting out on our deck with this almost first grader, when George brought out the phone. Charlie was so surprised to get to talk to his new teacher! She was just calling to tell him how happy she was to have him in her class this year, and how excited she was for the first day.

It was so sweet of her to call, and I think it made him feel good – but it didn’t lower his anxiety level much.  This morning, we had some snuggle time, thanks to the fact that I took the day off for his first day, and I made him pancakes (his favorite) for breakfast. But when it was time to get dressed and on our way, he decided he did not want to go, he didn’t want any first day photos taken, he didn’t want to wear his new backpack, he didn’t want to say hello to our sweet neighbor, his prior teacher, who came over to wish him a happy first day. He was definitely in a funk!

I finally talked him into a couple of first day photos, and we were on our way.

You can see how much he wanted to be photographed in this one: 

But I really love this one!

We live about a half mile from his school, so there’s no bus (to Charlie’s dismay) – but when the weather is nice, he can walk and/or ride his scooter. George and I both walked him to school this morning, and as we got closer, the streets were crawling with families. I’m usually at work by the time the kids head to school, so it was fun to see everyone lining up to drop their kids off. We were able to walk Charlie into his classroom and help him unpack his supplies a little, but none of the parents stuck around very long. I had a lump in my throat as we said good-bye to Charlie, who looked on the verge of tears. I was too, though I tried to hide it from him! And looking around his class, it was very apparent that he was not the only one feeling a bit upset.

I was thinking about him all day – but I have to admit, it was really nice to have a free day! George and I took a long walk, I went to the grocery store, cleaned Charlie’s room, and emptied, sorted, and re-folded all the clothes in Charlie’s dresser. But by 3:30, I was ready to walk over to school so we could await the 4 p.m. dismissal.

I thought Charlie might be tired when he came out, but when he came out, he ran right to us with a big smile on his face. When I realized he’d left his lunch box in the classroom and offered to go get it with him, he said, “No, I’ll go back and get it by myself.” He grew up already just in this first day!

Day 1 Done:

As he scootered home, he told us lots about his day, and while he wouldn’t admit it, it sounded like he really liked it! And the cherry on top was when we turned up the last street before ours, and a boy yelled from his driveway, “Hey, it’s Charlie G! Hi Charlie G!”  Apparently this boy (who lives about a 2 minute walk from our house) is in Charlie’s class, and they sat together at lunch. His mom said he had mentioned Charlie twice already. It made me feel so good to know he’d already made a new friend, and especially someone who lives so close! He also said he made friends with the boy who sits next to him.

I’m really relieved that the first day is over, and that he made new friends and had a good time.

And a quick side note, which is that Charlie has also really started to swim!!  After a fall/winter/spring full of group lessons, we were really hoping he’d be swimming this summer, but it started off pretty slow. We got him into private lessons with a new coach, though, and have spent a lot of time at the pool with him over the past few weeks – and all of a sudden this weekend, he wanted to go into the deep end and swim! I treaded water in the middle of the deep end, and he would swim from the wall to me, grab on for a second, and then swim back. He doesn’t put his face in the water, but he is kicking and paddling enough to get himself from point A to point B without drowning – which is the first step!  I’m really proud of him.

Changes

This week, we said good-bye to Ms. Pamela, who has been in our lives for 7 years! She started working for us in December of 2008, when Charlie was about 8 months old – and finally worked her last day on Tuesday. It’s amazing to think she’s been with us his whole life. And while I know we’ll still see her and her family, it’s weird to imagine it won’t be a daily thing anymore. I don’t think it has sunk in for Charlie yet, since it’s only been a few days, and she didn’t work full time for us this summer anyway. But he mentions her all the time (he always has), so it’ll be weird when that starts to fade a bit. She has cared for him and nurtured him, cleaned up after him and fed him, picked him up from school (she was late to get him from school ONE TIME all of the years she retrieved him, and then only because she got caught behind an accident!), introduced him to new friends, taught him so much, and taken him into her family. She will be missed.

On top of that, on Wednesday he had his last session with Crista, the wonderful occupational therapist who has been caring for him since he was 4. George took him for his last session so I didn’t see their good-byes, but Charlie told me he almost cried giving her a hug. She sent him home with several goodies and a binder with strategies to help him next year. And she sent us the sweetest email about how occasionally, she meets a child who makes a big impression on her, and that Charlie has been that kid since their first session together. She’s been a wonderful influence on him and has really helped his confidence grow, and she’s given us strategies and suggestions to use in parenting also. It was hard to say good-bye to her for me as well, because I don’t know if/when we’ll see her next, but I know we’ll keep in touch.

When you have a baby, you know you’ll do anything you can to give them the best of everything – but you don’t imagine (or at least, I didn’t imagine) how much of that is going to be finding other caregivers to help you mold and teach your child. And when you have a child with any kind of special needs, the importance of those people in his life is that much more crucial.

We have been blessed with so many great resources along the way. From talking to other parents, some of whom have had struggles with baby-sitters and teachers and therapists that weren’t a good fit, I know just how lucky we are to have had so many good people helping Charlie, and loving him along the way. I know at this stage in his life, it’s natural that we let go of some of these resources, but it is really hard for me! And I know it’s hard for him.

Yesterday, we took him to open house at his new school. It was total chaos – the whole elementary school had open house at the same time (doesn’t seem logical to me, but whatever) so the school was filled with teachers, students, parents, siblings, and noise! I was worried Charlie was going to be intimidated by all of the craziness, but he handled it really well. His teacher seems nice and his buddy Charlie is in his class, so that will make the transition easier. But he’s still nervous, and has been right underfoot for the last several days – waking up early so he can say good-bye to me before I leave for work, and sticking right with me as soon as I get home. It reminds me of how dogs get when they see you packing a bag – they want to be right on your heals so you don’t leave them behind. I wish I had some great ideas for easing Charlie’s transition into his new school and first grade (gulp!) but other than talking to him a lot about his feelings and the fact that the other kids are nervous too, there’s not much that I am doing that helps. I know he’s just going to have to give it a go and get used to it. But when I think about it too much, it feels like someone’s wrapped their hand around my heart and just keeps squeezing. I’m going to be on pins and needles Tuesday until I can pick him up from school and hear about his day. I so hope he’s happy there!