Madison Meet-Up

After Dr. Pauli's visit we got to meet up with three other families familiar with hypochondroplasia. Fi is about 2 1/2 months older than Belalu. A is almost three years old, and P is five. The kids all had fun playing together, and the adults had plenty to talk about. It was really nice to meet everyone, and we decided we would coordinate Fi and Belalu's appointments with Dr. Pauli again next year so everyone could meet up again. 

The whole gang: of course we couldn't get a photo where they were all sitting still and/or looking at the camera at the same time ;)

It was interesting to compare experiences. P, A, and Belalu all had neonatal seizures. A is currently weaning off her medication now, so hopefully they are in the past for her. Fi was the only one diagnosed before birth, Belalu was diagnosed at 9 months, A was in the past year, and I think, if I remember correctly, P was diagnosed when he was three. 

The Boys

The Youngest Girls

P and A

I didn't know the other two families before we met in Madison, but was such a treat for me to meet Fiona and her mom after becoming friends via our blogs. Belalu is so lucky to have a friend so close in age with hypo, and we realized that when we're in Vigo, our families aren't too far away, so we're hoping for another meet-up before Madison next year.

Did you notice Belalu's shirt???

I've mentioned before how lucky I've felt to meet so many wonderful people since Belalu's diagnosis, and I definitely felt that way after our visit to Madison. To know there are such loving families just a phone call and/or car ride away makes me feel very grateful and fortunate. 

Happy October!

September went out with a bang. It was quite overwhelming for me- I'm more than happy with just one social event a week, but we have been out and about since Thursday.

Thursday we went to hear Dan Savage speak about his It Gets Better Project. It was a funny, educational, heart breaking talk. I'll write more about it in my next post.

Friday we had dinner with some new and old friends. It was so nice to be at the end of September and still dining outside under the stars. Essie had more than his share of cookies, though, and even though he got sick the next morning, he didn't appear to feel sick at all. We were supposed to go to a bowling birthday party Sat afternoon, but had to cancel because I didn't want to take the chance that it was the flu and get everyone else sick, too.

Saturday, after stocking up on this week's veggies at the farmers' market, we took the boat out to a sandbar on the river. There was already a houseboat there with a bunch of guys hanging out and a couple of other people by a canoe when we arrived, but within five minutes of our pulling up to the beach, a dozen or so canoes and kayaks also pulled up, and suddenly there was a party- bluegrass music and all. They stayed for a couple of hours and then left us with the silence of the water once again. It was an unexpected, but welcome addition to the afternoon with friends.

Today we had a birthday party at a local park for Essie and Belalu's friend who turned 2. Belalu had received this sweet dress for her birthday last month from some friends of ours, and I was so happy the day was warm enough for her to wear it. I think it'll still fit her in the spring, but just in case...

It was such a great weekend. The weather was gorgeous, we were outside a ton, we got a lot of friends and family time, and I somehow still feel caught up with work and ready to start a new week. Hope your weekend was also wonderful!

Encuentros: Vigo Meet-Up

Thursday afternoon we met the family who heads Fundación Magar here in Vigo. Their daughter, N, who is 13 years old, loved meeting Belalu and played with her pretty much the whole time. When Belalu was clearly ready for a nap, N rocked her in the stroller until she fell asleep.

As the kids played, the parents talked. We learned that they started the foundation when their daughter was just a baby, because when they searched the Internet for information about her condition and wanted to contact other families, they had a hard time finding relevant information. She said the primary aim of their foundation is to raise funds for research in achondroplasia, but that their web page also serves as a space for families to connect and keep up to date on conferences, reunions, and news regarding medical advances, etc. Regarding the social aspect, they know of about 15 families in this region of Spain (Galicia) whose children have a skeletal dyplasia, the majority with achon. They also said that almost all the young people with achondroplasia that they knew have chosen to undergo limb-lengthening surgery. N herself spent the past year lengthening her legs and just started on her arms. She told me it didn’t hurt at all, and her parents reiterated that the surgery was completely her idea. Her mom told me that they hadn’t planned to do it, but that N saw the results of one of her friends that did, and she wanted to do it, too.

We asked how it’s been for her socially, and they assured us that so far it has been very positive. They shared an anecdote about how when she was 5 years old, they realized she didn’t know how to button her shirt. Nevertheless, she always had her school shirt on correctly (in Spain all little kids wear a uniform at school - a type of over-shirt). The teacher watched her one morning and realized that she would put the shirt on, walk over to whichever friend was free at the moment, and that friend would button up her shirt for her. “She has a whole court of ladies-in-waiting ready to help her out,” laughed her mom. When we asked about strangers staring, they just dismissed that worry, too. “Oh, she doesn’t even notice anymore.” While I appreciate the positive perspective, I’m hesitant. After all, N was insistent on doing the limb-lengthening surgery. However, I didn't press the issue.

The families in Galicia usually get together for a day in the summer, and we just missed this year’s gathering, but we’ll be in touch for next year and they said they’ll try to match our schedule with theirs so we can meet more families.

N and her family were very open and welcoming, and we spent a nice afternoon with them. They assured us that the most important thing we can do for Belalu is to promote her self-esteem and confidence. N’s personality reminds me a lot of Belalu. I look forward to seeing them again next year and we’ll be in touch via email until then.

Competitive Parenting

Image from here

Since I found out I was pregnant with Essie, I’ve been aware of the ridiculous phenomenon of competitive parenting. I thought it might just be a US thing, but a recent conversation with some moms here in Spain revealed that not to be the case.

As with most areas of life, there are so many options. Breastfeeding or not (and how long); daycare, nannies, stay-at-home parenting; aspirin yay-or-nay, vaccines, ditto; screen time- what and how long; plastic vs wooden toys; what kind of diapers, what kind of food, where your kids sleep and how long…. The list goes on and on and on. And for every choice, there is a team of experts to support why one way is better than the others.

I feel fortunate that for the most part, my actual exposure to competitive parenting has been fairly limited, and I try my best to keep it that way. When I do come across a mom who wants to engage in parenting competitiveness, I remind myself that her judgments reflect on her insecurities, not my parenting.

I am so lucky to have so many amazing friendships with parents who are interested in sharing their experiences, fears, weaknesses, and of course, joys. I have been so lucky to find many friends that haven’t fallen into the competitive parenting trap.  Oftentimes, the only thing we would appear have in common is a shared concern for our children. Given the diversity of our backgrounds and experiences, even what we want for our children isn’t necessarily the same thing. Nevertheless, we listen, and we share- sympathy, advice, hope, experience- whatever we can in the particular circumstances. And that’s enough. I seek friendships that are based on respect. Respect for our differences, respect for our perspectives, respect for our individual experiences.

That’s why I’m so grateful for the LP parents I’m getting to know. I have found no judgment or competition, just support, love, and acceptance for our family. Competitive parenting may be thriving in some circles, but I’ll keep it out of mine.