Lost: Two Childhoods

On Sunday, we took the boys to the schoolyard nearby to learn how to ride their bikes. I’ve had the bikes in storage for nearly two years now, and finally pulled them out and decided since I have help now, maybe it’s time they learned how to ride their bikes.

So, the boyfriend and I walked all three kids to the schoolyard, I provided verbal guidance as I watched him tail behind the boys teaching them how to ride. It was all I could do since I had to stay with Sophia.

I watched as they put their feet to the pedal, and would immediately plant it back on the ground because they’ve lost balance, but they never gave up. They kept going.

Pedal. Floor. Pedal. Floor. Pedal. Floor. Pedal. Floor.

I watched Donovan try to ride alone as the boyfriend helped Jordan, and so did a little boy. The little boy must have been about 5 years old. He sat on his bike, and followed Donovan around. I noticed the little boy was saying something to Donovan. I didn’t move from where I was standing, but I tried to focus on hearing what the kid was saying. I couldn’t catch it all, but I heard just enough to catch, “… and I’m so much smaller than you. Look how fast I can go.”

And he sped ahead to show off. I saw a look of defeat in Donovan’s eyes. He was disappointed. He was ashamed. He was embarrassed.

And my heart broke.

I couldn’t get mad at the little boy. He was just a little boy. I know he didn’t say it maliciously, but that stung.

He was right. They are just learning how to ride their bikes when kids half their age already know how to ride bikes…

It’s sad because it really brings to light how much of their childhood has already been lost. While 5-year-olds were out learning how to ride their bikes and do fun kid things, they were watching their sister struggle to learn how to do things babies her age did naturally. While 5-year-olds were excited about holidays and birthdays, they spent theirs wondering if Sophia was going to be home or in the hospital. While 5-year-olds were going on family vacations, they accompanied me and Sophia to medical appointments. Vacations were our trips to medical conferences or specialized doctors in different states. While 5-year-olds were wishing for new toys and fun games, they were just wishing for her health to improve.

They missed out on a couple of years of just being kids. It makes me proud to see how much more mature they are than their peers, but it makes me so sad to know it was at the expense of their childhood.

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This Time Last year…

Today New York City hosted its 4th annual One Small Step Walk for Prader-Willi Syndrome. This is our third year attending. By far, the best walk we’ve had so far. The weather was beautiful compared to the rainy days the past two years. Everything just went a lot smoother than they did previous years.

But the biggest thing for me, personally, was this. This time last year, I was still wondering if Sophia was ever going to start walking. Everyone told me she would, but it was just taking forever for the day to come, I couldn’t see it.

And look at her this year joining in on the Zumba session. That’s my girl!

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Back to School Craze

Change is good. I am happy with where my life is headed right now. Sophia is old enough to start CPSE. She’s going to a great school. The boys are continuing on with their academic career. I got a new job. I love my students and I am excited for the new school year. I am taking on more responsibilities with the PWS organizations. This is all GREAT change. 

But, I have to say, maybe it’s a lot happening all at once. It’s taking me a little longer than I had hoped to adjust to it all. 

Now, you get to read all about the insanity that is my life. I like to do things in advance. So, a couple of weeks ago, as soon as I got hired, I started looking for a babysitter. Because I realized 9/3 (today) I would be working, and I didn’t have anyone to watch the kids. So, I found one and hired her for the full day. Well, turns out  my work schedule was not a full day. So, I texted her to ask her if she still thought it was worth her time, and she never replied. So, of course, in the midst of my parent orientation day when I have 18 students with parents, siblings, grandparents in my classroom, I get a million phone calls and texts (which I did not realize until an hour later after everyone had left). As it turns out, the babysitter wasn’t ignoring my texts, she never got them. 

Awkward. I had the babysitter and my neighbor from upstairs wondering what the other was doing there. Of course, the babysitter is upset with me since she doesn’t exactly live close by. So, instead of paying $50 for the day, I ended up paying $90 because I’m a good person and I reimbursed her $40 for her inconvenience. 

I come home to gather everything for the kids to go to school tomorrow and I realized…….. I forgot to get Sophia’s medical form filled out. She cannot start school without her medical form. Well, her pediatrician was completely booked. So, then I went on a ped hunt to find someone who can see her today and fill out the form today. No worries. I found one. But I will be going back to our regular pediatrician. Very quickly. Very, very quickly. 

I realized I forgot to allocate time for laundry. So, I will be living it up this week and paying someone to do my laundry. 
I am now staying up late labeling school supplies… or procrastinating and blogging instead. 
I am a complete mess because I won’t get to put Sophia on the bus tomorrow. 
I have to figure out how to drop Donovan off in the hectic school yard, and still make it to work on time to greet my work babies. 

I should get back to work. These supplies aren’t going to label themselves!! (But, they should)

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Follow the Schedule

This past week, I have had to find babysitters for the kids while I did my training at work. On Tuesday, my mom stayed home with the kids. On Wednesday, a friend drove out all the way from Queens to watch them. And today and tomorrow, I asked my neighbor upstairs.

I always leave a food schedule indicating what should be eaten and at what time.

Today, when I got home, my neighbor was giving me a detailed recap of the day, especially since I was unexpectedly asked to stay for a full day instead of my half-day training.

She laughed and told me, “it was hilarious. You put on the schedule to have peanut butter and jelly sandwiches at 11:30, so, they started making their sandwiches at 11:15, and then just sat at the table, staring at the clock, watching the minute hand… and eventually, they said, ‘oh! It’s 11:30! We can eat now!’ Then they put Sophia in her chair, and then they ate.”

How awesome are these boys?

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Life of a Working Parent

Today was my first day working again after 3+ years of, I guess, maternity leave. I was supposed to be there at 8:30, but aimed for 8. So, I woke up at 6, got ready for work, fed the kids, and was out the door by 7:15. I parked and got to work by 7:35. Sat in the car for a bit and went inside at 7:45. 

It was an awesome day working with all the little ones in the school. I came home with snot and spit all over my shirt, but it was definitely worth it. 

Then, I came home to a big mess, but warm welcomes–hugs and smiles and kisses, Sophia in a backwards pull-up, you know, the works. I respond to a few emails, do a little bit of reading for work, and then decide to clean the floors. My mop breaks… so I go old school, get on my hands and knees with a towel. Finally clean the entire floor… and Donovan decides it would be an awesome idea to pour out all the shells he collected from the beach… with sand. Floor was covered in sand… and I had to do it again. Fun times! So much for, “No, I promise. They will stay in the bag. Always.” 

At least grandma took care of dinner. 

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Giving up Control

I don’t know how other parents do it. I’m going back to work after many years of being a stay-at-home mom. Now I won’t be able to make it to pick up my boys from school or get Sophia off the bus. Heck, I won’t even be there to put Sophia on the bus in the morning. I am relinquishing that control to my mom. I need to hire a babysitter to be here for the kids after school. I am probably putting Donovan in an after-school program so I can get him after work.

I need to hire a babysitter. I have NEVER hired a babysitter in the entire 9 years I’ve been a parent. Now, I have no choice and it is killing me. I have interviews lined up from tomorrow to Tuesday. I am interviewing 9 people out of the 16 that contacted me. 

What can I possibly know about these women from an interview? I mean, I’m going to have them interact with the kids and see how the kids respond to them as well, but we all know that anything can happen once your back is turned. 

How do you guys do it? Please tell me how! I am a complete nervous wreck ready to have a mental breakdown! I feel so alone. I need a hug. Or the ability to be in more than one place at once. 

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Hyperphagia

“Hyperphagia. The dreaded phase of PWS: when your child’s hunger can no longer be satiated. PWS is a spectrum disorder, but one of the symptoms that affects EVERY person with PWS is the insatiable hunger. No matter how much they eat, they NEVER feel full. They just ALWAYS feel hungry.

As a PWS parent, every little thing involving food worries you. Every time your child asks for more food, you panic. Every time your child picks something off the floor and puts it in his or her mouth, you panic. Every time he or she eats everything on the plate, you panic. Every time they say they’re hungry, you panic. Every time they eat something non-edible, you panic. Every time their eyes light up at the sight of food, you panic.

You’re too scared to let them pretend to eat. You’re too scared to let them work with food items during therapy. You’re too scared to teach them anything about food. You’re too scared to let them see food.

Which is funny, because you go from begging them to come out of their failure to thrive stage to immediately panicking about their hyperphagia stage. You start to to count and limit calories. You start to look into Paleo diets, Atkins diets, vegetarian diets, vegan diets, everything diets.

You begin looking around at your friends and family members and start mentally banning time alone with certain people because certain people, you know, just simply will not understand PWS. Certain people you considered nearest and dearest to your heart will not understand that your child can eat themselves to death. Certain loved ones will not be able to resist the plea from a sweet child, “Just one more plate, please?”

And you want to see the good intention and the kindness in the second, third, and fourth plate they will give your child, but you can’t. Because this is your child’s life. So you can’t get soft and let them give in to your child because it was nice and sweet. You simply can’t because you don’t want your child to die from a ruptured stomach, nor do you want them to suffer from diabetes or obesity.

So, suddenly, you become the mean one, the antisocial one, the one who thinks you’re better than everyone and you’re suddenly the perfectionist that has a stick up your rear end because you don’t know how to relax… because it’s “not a big deal.”

But it is. It is a big deal. It’s your child’s life.”

 

This is something I wrote for awareness month over a year ago. It’s still true, though. And until we find a treatment for the hunger, this will always be true for my family and many others. So, please consider making a donation to the Foundation of Prader-Willi Research.

Click here for my walk page.

Every dollar donated moves us one step closer to finding this treatment.

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