Special Needs

If I could write a letter to the ‘me’ I was just one year ago…

A year ago (well, give or take), I was just a very pregnant mom to a toddler. I was working full-time, up to my due date, and too guilty to take the extra time to take a break, put my feet up and get a pedicure. I was mad at myself for gaining too much weight during my pregnancy (Shamrock shake and medium fry after every appt – um, I think so!), I was worried about money and making it all work while being on maternity leave. I felt sad I didn’t have a really nice home and a new bedroom/nursery for my baby boy (even if my toddler was stoked to share his room). I was stressed because the weather was so cold and I’d feel cooped up in my house on leave. I was overwhelmed with things I’d now kill to feel overwhelmed with again.

Today, at our 16thappointment since February 16, I was desperately trying to make it to the bathroom before we headed to ENT. I caught a glimpse of the door for ‘Special Needs.’ My heart broke thinking about the people who may regularly have to visit that office. And then, right before my eyes, I read ‘Neurofibromatosis.’ My son’s diagnosis, so blatantly in front of my eyes – ‘special needs.’ Man, what a difference a year makes. What a different path my son’s life may take. These are worries. These are concerns. These are things worth stressing about…

Neurofibromatosis
ENDNF

So, in that spirit of realizing just how much I’ve grown in a year…. I thought about what I’d write to the me I was just a year ago. I’d have so many things to say, starting with:

1)       Stop beating yourself up. Life is messy. Working and parenting, and trying to be a wife – and eat healthy and workout, and clean a house, keep a marriage happy, and sell a house, and move, and manage finances – this shit is hard. It’s exhausting at times and you are doing no one any favors by not giving yourself a god damn break. Stop doing 6 loads of laundry on Friday nights. Sit down. Watch Shark Tank. Have a glass of wine. Or three. Don’t constantly compare or think you are failing because you aren’t in a size 27 jeans. You are good. You’ll get there.

2)      Stop giving a fuck. Who cares if you live in an affluent area and people dress more for grocery shopping at Sendiks than you do for a night out on Friday. WHO THE FUCK CARES. Wear your Titleist Hat with two-day old showered hair and caked on makeup, and get your shit done. Life is so much more than how we look, how others think we look, what cars people drive, what home they drive home to, and so much more. STOP caring. You are a better person than most of them will ever be – and you can own everything you have (and don’t have). Trust me, fast forward a year and you’ll know damn well what I mean.

3)      Appreciate your dumb worries. So your son or daughter had a bad day at school. They cried because someone didn’t want to be their friend. You are worried about how mean kids will be in grade school and what to buy the teachers for an end of year teacher gift. You worried about whether or not your kid has a nice neighborhood to trick or treat at for Halloween. These things stressed you out in previous years. These are LOVELY worries. Seriously, lovely. If these were still your worries Megan, you’d be laughing, loving and enjoying them. If you are blessed enough to have this type of concern in life – appreciate it.

4)      Do more for others. That person that is running a marathon to benefit children’s cancer? Donate. I know you don’t have any money – but trust me, you never will. $20 to their efforts means a lot to them, and means more to the families of kids suffering. When you have healthy children, you are not facing a lifetime of medical bills, therapy session bills (not covered by insurance), meals on the go, travel to healthcare centers, days off of work. So find $20 somewhere and give it back. Do more for others. When you read a caringbridge or gofundme and the subject is someone’s child who is suffering – and they are connected in some way shape or form to someone you know – DO SOMETHING (besides sob at their story – which you are good at). Send a gift card for a meal, a simple birthday card to their child in the hospital, you get my drift. You may not know how much it means to someone.

5)      Remember, you are resilient. There are days that you don’t think you can possibly keep going. At the office. As a wife. As a mom. As a friend. But guess what, you will. And you’ll probably kill it. Know that so many things in life are out of your control, but somehow, you will adapt and move forward. Same goes for the worries you have about your kids – they, too will surprise you. From the worst tantrums can come the most amazing revelations and attitude adjustments.

6)      Let others in. You suck at this. You still suck at this. You might always suck at this. But do something to let others in. If you can’t ask for help, at least accept it when it’s offered. If people want to do something, give them ideas. If people want to be your friend, be open and honest about the time you have right now, but how much it means that you will have their friendship when your shitstorm settles down. It’s okay to let people in. Even if it’s strangers and through writing on a blog.

So, a year ago, I thought my life was falling apart because my dog died the week I went into labor, my husband lost weight while I was gaining, I went into labor with the worst norovirus/flu, I lost my wallet at Target two days after delivery… what I didn’t know was that these issues were character building annoyances. In a very blessed. Easy. Luxurious and oh so under appreciated life.

 

It will be okay.

-Megan

 

 

 

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Stop hearing me. Start listening.

Sometimes, I don’t want a response. When you are at your 13th appt in two weeks, sometimes you literally just want to be listened to. Today, I walked into our pediatrician appt (a normal one year check up – pretty fun/low anxiety) and our pediatrician looked at me and said – how are you doing, seriously, how are you doing? He called and made sure he had all the reports from every single appointment. He shook our hands and said – it’s been a long three months and incredibly busy two weeks – you guys have been through a lot. 

It was a 4:15pm appointment. I walked out at 5:45pm. He asked questions. Listened. Told me that he’s learning so much from our family. Applauded us for being Patrick’s advocates, questioning what we are told, and knowing our child well enough to suggest something was off from the very beginning. He told me that doctors know a lot, but not everything. They are specialists for a reason, but the one thing they need to get better at is listening. Because it’s in hearing the families story that you start to get an idea of the whole picture. It’s in listening that he knows how pushy the Dr has to be. It’s in listening that he knows how much the parents are already doing. And listening allows him to learn about their older children.  And it’s when you let parents (the child’s expert) start talking and explaining that he can understand the parents ability to cope. There is no such thing as a Dr that takes an hour and fifteen minutes for a one year checkup anymore. But today, what we experienced was exactly what we needed. To be listened to. And reassured.

This can be applied at the office. In your marriage. In family situations… just once, when you normally want to respond and offer all your thoughts and expertise, just shut up. Take a deep breath and listen. And listen some more. And let someone work through all of their frustrations and talk in circles.

When people need support the most, listening is one of the most kind and understanding things you can do.

It will be okay.

-Megan

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