I Didn't Know What I Didn't Know

Tomorrow my precious daughter, A, turns 4.

While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.

The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).

The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.

The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.

The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).

The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.

The day before my daughter was born, I thought that NICUs were for other kids.

The day before my daughter was born, I didn't fully know and appreciate the power of prayer.

The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.

The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.

The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.

The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.

Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.

The "Stuff" of Childhood

Six years ago, when D was a newborn, our house was over-run with baby gear. You know, all the usual suspects: a swing, a bouncy seat, an Exersaucer, a high chair, a second swing for upstairs, etc. There is so much STUFF that a newborn seems to require. We didn't have that many toys, save for a few rattles, but the equipment over took the house.

Within a few months, the baby gear started phasing out (the bouncy seat and swing only holds up to a certain weight) and the toys started to come. Soon, it seemed that our little house was overrun by crap toys. Our house was filled to the brim with big, brightly colored plastic toys, mostly from Fisher-Price. We had the zoo, Noah's ark, the farm....so many sets, and so many pieces! Add to that the various balls, toddler tool sets, stuffed animals, train sets...heck, our house looked like Toys R Us!

Every day D would play with the toys and make chaos; every night I would put the toys away. I was very obsessive-compulsive back then, and would have to make sure that each set had all of it's components. If one animal was missing from Noah's ark, for example, I couldn't rest until I found it. I sometimes grew resentful of having so many baby items take over my house, but I told myself that this wasn't forever. That one day, sooner than I thought, there would be no more big, brightly colored plastic toys around the house. One day, the only toys that D would play with would be board games and electronics, all of which would be stored in his own bedroom. I told myself to cherish this time, that the chaos of all the toys was a phase I would one day miss.

A was born two years later. The baby equipment came out of storage, the toys that D had outgrown once again was moved to the living room. Clutter ruled.

Now, another two years later, D is 6 and A turns 4 in a few days. We have long since sold or donated the baby gear; we have no need for Exersaucers, bouncy seats, or high chairs in this house. And I just realized that we no longer have big, brightly colored plastic toys laying around the house. The days of the Fisher-Price Little People are long behind us. My living room, while still filled with toys, is looking less like Toys R Us. What I told myself long ago has come to pass (and continues to be every passing year): the older the kids get, the less big toys there are.

Don't get me wrong; we still have lots of "big" stuff around. A has her play kitchen, dollhouse, and dozens of accoutrements for her beloved baby dolls. And D has a mini drum set, several Lego sets, and enough Star Wars figures and vehicles to launch an all-out war on the Dark Side. But as sure as the sun will rise tomorrow, there will be a day, maybe not tomorrow but certainly in the next few years, when the play kitchen, dollhouse, and Legos will also go. And in their place will be smaller and more compact games and toys for school-age kids, then tweens, then teens.

In a way it makes me sad. J and I are DONE having kids (factory is officially closed there!) and while I don't have any regrets about that---two kids are perfect for me and in no way do I want another baby--it makes me wistful that the baby stage of both my kids is behind me. I've written about this before, how their childhoods are going so fast and that I need to cherish the magic of each and every day. One day, before I know it, both kids will be gone, off to college and beyond, and I will cry over the loss of those freaking big, brightly colored plastic toys that overtook my house, and was the hallmark of a baby/toddler-filled home.

Creating an Athlete

"Life is not about finding yourself. Life is about creating yourself." --George Bernard Shaw

As a newly turned 40-year-old, I have been thinking about how I need to find myself. After reading this quote this past weekend, I realize that instead I need to create myself and the life I want!


I mentioned in a post a few days ago that I am training for two upcoming half marathons. I have been pretty good with my training, although I do need to increase my running during the week (which I have been doing recently). I keep injuring myself, however. Last fall I fractured a toe...more recently I get sudden leg cramps and nerve pain.

A friend suggested to me that instead of always running, I add in some non-impact cardio exercise, like swimming and cycling. This way I am still getting a good workout, but not always putting so much stress on my legs. Last week, I went swimming for the first time. (Well, not the first time, obviously, but one of the first times ever as a workout). I did 12 laps, which just about killed me. It was so hard! Yesterday I again went swimming, and did 20 laps---which is half a mile!

This same friend has suggested that I sign up for an upcoming triathlon (he himself does triathlons). In October there is one that is a "sprint" distance--that is, a 1/2 mile swim in the Bay, a 15k (9.4 mile) bike ride, then a 5k (3.1 miles) run. And you know, what? I think I am going to do it! I can easily do the 5k run. Yesterday, I already swam 1/2 mile in the pool. And I know I need to train for the bike ride, but that shouldn't be too bad.

What I am most nervous about is the swim. Yes, I did 1/2 mile yesterday, but that was in a pool, taking a short (5-30 second) break every length of the pool. In the Bay it will be totally open water. Luckily, the race isn't for 3 1/2 months, so I have plenty of time to work up to continuous swimming. I am taking my bike in for a tune-up today, and when I get it back will start riding outside. I rode an exercise cycle at the gym this morning, and am in so much pain---I must get my quadriceps in shape!

I am very excited about my new goals---half marathons plus a triathalon! I have never been an athletic person; never played a sport as a child, and was always the last to be picked for teams. And to this day, I am very slow. But I am excited about CREATING myself---the self of an athlete---an image I have in my mind. J and I are also starting a program tonight inspired by a website called hundred pushups...which, supposedly if we follow it, will allow us to work up to doing 100 pushup (in one session!) in 6 weeks. Whew!

Here's to creating my new self!

Healthy Updates!

I feel like I should update some issues that I have talked about in previous postings....my caffeine intake and my running. So here goes!

Caffeine

I was consuming way too much caffeine (on average I was drinking a cup of coffee a day, plus 1-2 Diet Cokes at home). I stopped in April, mainly due to a segment I happened to hear on Oprah Radio one morning. I haven't bought Diet Coke for the house since then, limiting it to once in a while if I'm out at a restaurant (even then I try to order lemonade instead). And I rarely brew or buy coffee anymore; I perhaps have 2 cups a week, if that. Days will go buy without ANY caffeine at all. I still need to work on eating less junk food (cookies are my weakness) but nonetheless I am very proud of myself.

Running

I have been running (ok, jogging/walking) on and off for years (even doing a half marathon in 1999 and a full marathon in 2003), but hadn't done much of it since having kids. In January, I recommitted to my running, and have been doing great ever since. I am signed up for 2 half-marathons (a half-marathon is 13.1 miles); one is in San Diego in mid-August, and the other is at Disneyland over Labor Day weekend. My ultimate goal is to sign up for 3-4 half-marathons a year. By doing this, I will always need to keep a base of about 8 miles for my long weekend runs, and can increase accordingly if a race I am training for nears. I don't do well with "just going out for a run"; I do best if I have signed up and paid for an actual race to do. That motivates me to action, since if I don't put the time in to train, I won't be able to finish the race.

Why do I run? Here are the top 5 reason, in order:

1) Weight-bearing exercise, like running, will help control my osteopenia, or low bone density. I do NOT want to slip into osteoperosis range.

2) I have a terrible history of heart disease on both my father's AND mother's sides, and am trying to avoid what genetics may have handed down to me. I have amazingly low cholesterol, very low blood pressure, and regular exercise will help keep me heart-healthy.

3) I want to have a thin and fit body. Oddly, this used to be my #1 reason for running, but now it's #3. Now that I'm 40, my health comes first. But I do want to look good. Several years ago I gained 20 pounds and was suddenly wearing a size 12. I lost that 20 pounds long ago, and now a size 6, and I have vowed to NEVER get to a higher clothing size again. Ever.

4) Being a stay-at-home-mom with two kids, one of which has some special medical needs, I rarely get alone time. Going for a run gets me outside, by myself (or more rarely, meeting with friends to run) and gives me time to think, listen to music, or catch up on my podcasts.

5) It goes without saying that exercise helps with stress relief, and pounding my legs on the pavement can help get out the stress that life gives me. Coming home all sweaty and drained is a great balance to the stress I can feel throughout the day.

I am also trying to integrate other exercise into my routine (weights at the gym, swimming and bicycling) but running is what I really like to do. I swam (for exercise) for the first time ever this week, and tomorrow plan on going for a bike ride...both are non-impact on my legs, and should help me not injure myself.

And those are my two big updates about myself! I am proud of myself for taking positive steps to keep myself healthy. My husband needs me, my kids need me, and I need to do whatever it takes to be around for a long time to come.

My Son, My Buddy

Suddenly, hanging out with my son has become fun.

Not that I didn't always enjoy it. From the moment I saw him when he was born, I was addicted to him. I craved being with him---a physical ache that would only abate when I was holding him, kissing him, nursing him, smelling his sweet scent. We did everything together when he was a baby....I never had a nanny or full-time babysitter, and in fact, only left him with a babysitter for a "date-night" with J a handful of times.

When A was born (when D was 26 months old) our time together changed drastically. First of all, with A in the hospital for 4 of her first 5 months of life, a lot of my time was spent away from D, bedside at Children's Hospital. We had family come in weekly, on a rotating basis, from out-of-state to help care for him while we were at the hospital with A. Also, that same summer, D started summer camp at our synagogue, and transitioned into the 2-year-old preschool program in September. So in both natural (school) and unnatural (A's medical issues) ways, my time with D became less than it was when it was just the two of us. However, even when A was in the NICU, I always made it a point to be home all afternoon with D, and there for bedtime. I would visit A in the hospital in the mornings, when he was at camp/school or a relative was watching him, then come home and spend all day afternoon with him, do dinner/bath/bedtime with him, and go back to the hospital after he went to sleep. So even then, I tried as hard as possible to spend good, quality time with my precious son.

But I digress.

Our time together has morphed into more fun for me. Not that playing Candyland wasn't fun (well, really it wasn't, but it was fun being with D) but it really wasn't my scene. Now that he is 6, and is going into first grade (!) in the fall, he is really getting grown up, and in turn more fun to hang out with. He asks intelligent questions, understands my explanations, and really "gets" things now. His sense of humor is developing (ok, he is really into making up nonsensical knock-knock jokes, but HE thinks he is funny) and he has evolved past Candyland to Monopoly and Jenga.

As much as I hate losing the baby in him I know that every stage is fun (and challenging!). He is becoming a real little person, with his own opinions and personality, and it's really fun to see. I love discovering how much of me he has in him (for example, he is an adrenaline junkie and loves roller coasters; he loves reading series of books and has to read each book in the intended order; he loves collections of things and wants complete sets). It is easier letting go of the baby, knowing that this older first-grader is here and is just as fun, if not more so.

The best part is that he still wants to marry me, still thinks am beautiful, and to this day will tell me "Mama, you're the best mom a boy could ever have". How could I NOT want to hang out with a child like that?

Dreams Coming True: Dance Class!

When I found out that I was pregnant with a girl, I immediately thought of the girly things we could do together. One thing I desperately wanted to do was take a Mommy-and-Me ballet class. Many of my friends with daughters had taken such a class, and it looked like fun. I had a son, D, and although we did lots of wonderful Mommy-and-Me activities together (like music, soccer and gymnastics) ballet was not one of them. Don't get me wrong; I am not a ballerina, and in fact, don't even LIKE ballet that much. It's just that the idea of taking such a class with my daughter seemed like fun.

After A was born, it was obvious that such a class wouldn't be happening for a long time, if ever. She had so many health issues, not the least of which was that she was born without semicircular canals, which are the parts of the inner ear that control balance. She didn't really start walking independently until this past January, at the ripe old age of 3 1/2! Since then, she has really taken off, even doing her first race. It was time to start looking into a class to fulfill my dream. I also decided to look into a gymnastics class, since she wouldn't be getting her school-based physical therapy and adapted p.e. over the summer. This girl has really proven to me that she is ready for some physically active challenges!

Finding an appropriate class has been difficult, however, Her gross motor skills are still delayed. I mean, she just started walking about 5 months ago! I would estimate her gross motor level at about 18 months or so. Plus she has some receptive and expressive language delays that put her behind about a year or so (again, my own estimation). However, cognitively she is right where she is supposed to be. Classes geared for younger kids would be good for her physically, but might bore her; classes geared for her age group might be right for her cognitively, but she'd be way behind physically. Ah, the dilemma!

I was lucky to find a dance school nearby that offers some classes that seem appropriate. One is that elusive Mommy-and-Me ballet; however, they are waiting for more registrants in order to start the class. The other is a Creative Movement class for kids ages 2-4. They started today, and A started with it! It's not the ballet class, with leotard and ballet slippers, that I had envisioned, but a dance class is a dance class!

It was so fun to watch her. I wasn't allowed to be in the class with her, so I watched through the one-way mirror outside. There were four other girls in with her, ranging in age from 2 1/2 to 4. A fit right in with the other girls. There were things that A couldn't do (skip and hop, for example) but some of the other girls couldn't do those things either. She followed directions, sat when she was supposed to sit, move when she was supposed to move. I couldn't have been more proud. Most importantly, she had fun, and was really moving and grooving to the music and having fun with the provided props.

I hope to also take that Mommy-and-Me ballet class, if they get more girls to register. But even if that class never happens, now I know that soon A could take an Intro-to-Ballet class all on her own. She is a miracle rock star ballerina!

The Grass is NOT Always Greener

For the most part, I think I do a pretty darned good job of not letting my life circumstances get me down. If I dwell on it----a husband with Young Onset Parkinson's Disease! A daughter with a gazillion medical needs!--it only gets me down...and really, life is good. I try to remember that everyone has special needs of some sort, and that makes me feel better.

I learned this lesson really well a few years ago. A was about 18 months old, and D was 3 1/2. Once a week we would take a free music class that I had found. It was fun to be able to take a class with both my kids. One day, I was in a rare bad mood. I forget now what had happened, but something had happened to make me throw myself a pity party. Perhaps it was raining that day and I had to lug two kids plus A's trach suction machine. Perhaps D was being particularly whiny. Perhaps I had my period and was extra irritable. Who knows? The point was that I was feeling sorry for myself and what life had thrown at me.

In walked a mom that I had never seen before. She was stunning---model gorgeous--and had with her her beautiful daughter. I watched them interact with growing jealousy. Clearly her daughter, who was younger than A, was typically developing. She was walking and talking just as someone her age should. My own daughter had just started crawling, at age 18 months. For some reason that day, it was hard for me to see typically-developing kids in such sharp contrast to A.

"They are so lucky," I thought to myself. "They are so beautiful, so typical, so NORMAL. They probably don't have a care in the world." I even found myself getting angry at their carefree life I imagined they led.

After class, the mother came over and introduced herself. She was really nice, and in the course of conversation she let me know that her older daughter (who wasn't there that day because she was in school) had autism.

Well.

Color me stunned.

In an instant, my whole view of her changed. Here was a woman who yes, had a typically developing daughter, but was also walking a different yet parallel path to mine. We are not dealing with autism in my family, but we have struggles just the same. Yet just looking at her, so beautiful and at ease you would never know just what struggles she had.

It illustrated perfectly the old adage: you never know what goes on behind closed doors. People have money troubles, marital discord, work problems, and medical issues all the time. Many are easy to hide from the rest of the world, and unless you KNOW the person, you may never know what demons they are wrestling.

From that moment on, I look at people differently. I know that everyone has issues to deal with. It may not be Parkinson's Disease or a tracheostomy, but it's something. And that is a tie that binds us all.

Now EVERYONE can comment on my blog!

I've changed my settings so that anyone can comment (ie you do not need to have a google account to comment). I love comments.... so feel free! If you don't have a google account, please use your name so I know who you are (rather than anonymous). Thanks!

Sibling Love

Is there any way to describe the joy of watching your children interact well together?

D is such a great big brother to A. Don't get me wrong: sometimes he gets fed up with her...she DOES act like the stereotypical annoying little sister hanging around him all the time. She idolizes him in the way that only a little sister can adore a big brother. And sometimes he annoys her, bothering her when she is doing something or acts a bit too rough. But for the most part, he is just fabulous with her.

Last Sunday was the last day of Sunday School for D at our synagogue. The teacher told me that she had everyone go around the circle and tell what their plans were for the summer. Most people talked about camps and vacation, beach time and Sea World. Daniel, too, will be going on vacation, and to camp, and to the beach, and to Sea World. However, here is what he chose to share with his class: that A was going to get her breathing tube out, and that she will get to go swimming with him for the first time, and how excited he was for that.

Now, of course we know this isn't exactly true. She is getting her FEEDING tube out, not her breathing tube (well...it IS a possibility her trach will be removed, but I doubt it). But the point is, even though he got confused, he was excited about A this summer, and about what she might be able to do for the first time.

He takes pride in her all of the time. When she says a new word, or attempts something physical, he always shouts, "Mama, A said x", or "Mama, A did y". He loves her, and is so proud of her achievements. There were a few times this year when I had to take A to D's kindergarten class (for a few of his class parties, or to bring cupcakes for his birthday, days I had to be there but my nurse wasn't working). He was always so happy to see her in class with him, and had her sit on the rug next to him. If anyone asked about her trach, he would simply explain that it was her breathing tube and that it helped her breathe. Simple.

I'm not sure how "different" he sees his sister. He must know that most kids don't have a trach, a g-tube, or hearing aids. However, he doesn't really question it. She just IS. This is how she came home. It's all he knows.

He loves her, and she loves him. I am 100% convinced that a large part of why A is doing so well is because of him. She wants to be like him, wants to keep up with him, wants to do what he does. Hence, she is a rough-and-tumble kid who likes to wrestle him, and she prefers Star Wars to Princesses (although the latter part is slowly changing). I am thrilled that they have each other---he gets to learn empathy and compassion, and she gets to strive for more.

I love watching them together....wrestling, dancing, playing Wii, singing. My two peas-in-a-pod. Frick and Frack. Brother and Sister...and I hope, friends forever.

Endings, endings everywhere....

Today was D's last day of kindergarten.

Let me say that again.

Today was D's last day of kindergarten. As in I no longer have a kindergartener. As in I now have a first grader. As in my baby is growing up so quickly I just can't stand it.

Those of you who know me in real life know hard I take these milestones. I love watching my kids grow up, yet it makes me incredibly sad at the same time. It goes so fast. I even blogged about it a few months ago when D turned 6. I wish I could stop time and let my kids be forever at this stage.....D at age 6, A almost 4. Of course, I wanted to stop by every year since my kids have been born...this feeling is nothing new for me.

As always, I was very involved in D's school. When he was in preschool, I helped out when I could the first year, and was room mom for the second and third years. This year, I was co-room-mom for the latter half of the year. I volunteered in the school's book room once a week, filing all the reading books that the teachers would drop off. I volunteered in his classroom once a week, usually spending my time making photocopies for D's teacher, but sometimes getting to read with the kids, or paint art projects. I went in to teach his class about Hannukah in December, and just last week I went in to make homemade pasta with all 23 kids.

I encouraged D to really take advantage of all school had to offer as well. Science Fair was coming up? D entered a project (he made rock candy!) Mother/Son Dance? We were the cutest couple on the dance floor. "Walk To School" day? D did it every month. International Festival, Family Game Night, Movie Night? We took D to it all. D has always been a kid who likes to try it all and I love to encourage him to.

With the end of school also came the end of his first year of Sunday School at our synagogue and his first (and only) season of t-ball. So many endings at once. Couple that with A's last day of school the previous week, plus her transitioning to a big-girl bed and you can see why this week is hitting me particularly hard.

Yes, this week I am a very nostaglic, although always grateful, mama. So proud, so sad, so happy, so wistful, all at once.

Now....onto summer!

Bittersweet Updates

Wow, I haven't posted in a week. This past week has been very bittersweet mixed with some good news.

First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.

However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.

Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.

On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.

Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!

All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.