Marvelous Monday

So much to say about what’s been going on, but I keep reflecting on our wonderful experience in California.

If you followed my social media pages, you may have noticed #lpaSD2014 making it’s way around with pictures, quotes, and events… all leading to the LPA National Conference in San Diego. It was amazing.

It is also something that we could not have participated in without the help and support of our parents and my aunt and uncle. Both my parents and Dave’s helped us get there (via flyer miles, rewards, food, and accommodations). I am also extremely grateful for my dearest, who works his tail off at work and then each weekend doing repairs to save up for the cost of eating away from home (yes, a BLT in San Diego is $10!). But it is more than the money. It’s the understanding. My mother-in-law was initially going to come with us (she will be attending workshops with us in Boston in 2017!), but decided that it was just too much for her… however, she still supported us going, which means the world to our family. San Diego is an awesome vacation spot, but the conference, the LPA organization and the knowledge and friendships we gain each year are invaluable to us.

#Aisforadelaide #lpaSD2014 #family #friends #dwarfism

Addie was blessed this year with a gift from a family who lost their child to a rare(r) form of dwarfism with a Lifetime Membership to Little People of America, and we could not be more thankful. Knowing  that Addie will always have access to the best advocacy, community and medical advice, even after Dave and I are not here to guide her, eases my heart. There are so many lesser known facets to the LPA organization that I hope she explores- including scholarships and a deep-rooted community- that having this membership offers her access to all this and so much more- forever! #aisforadelaide #lpaSD2014 #LPANationalConference #SanDiego

With that, the opportunity to go to as many regional (local) and national events as we can gives us all opportunity to learn, play, educate and be educated. Last year, I was a part of a panel that focused on social media and how we present ourselves as a community, and this year I spoke about why I keep pushing (advocating) for more education and awareness. Dave got to learn about different home adaptations and how he can make our house more comfortable for Addie without making it difficult for us. Even the grandparents got to go to some workshops and learn a bit more about what it’s like to grow up as someone with dwarfism, the things they can help Addie with, and just take part in the community.

#aisforadelaide #lpaSD2014 #expo #travel #sandiego

All-in-all… this was an amazing experience. Made that much better by our trip a few hours north to see my Aunt Donna and Uncle Ted. While I am forever grateful to the LPA and being able to experience national events, being able to see my Uncle Ted meant more to me than I can express. My Mom did not find her brother until she was in her 20’s. Adopted at birth, she was able to reconnect years later with a lot of research… and I am so glad she did. My Uncle is amazing- traveling to see us a lot in my youth- and coming to stay with us for much longer than he anticipated, when my Dad passed. We often joke in my family that I was a wild child, but that didn’t really happen until my Dad died. My Uncle saw firsthand how out of control I became and how quickly I down-spiraled. But still, he stayed. Day after day he supported my Mom and did everything he could to help with the daily running of the house, and the big things that my Dad had been too sick to do in his last months of life. Going out to see him, hug him, talk to him and see the spark in his eye was more than I could ask for.

#aisforadelaide #lpasd2014 #family #vacation #travel

He’s sick. I hate that. I hate seeing a man who has rocked the world, serving our country, playing a major role in aerospace development, advancing the programs that offer guide and service dogs to those who need, and most of all being an amazing family man- he’s diminishing in body… but never spirit. I was afraid he would be fragile and was instead surprised to see him, stout as ever, never batting an eye when he needed oxygen or apologizing for needing a break. Quite simply, as Ted has always been, he just is. Maybe that’s where I get my no apologies life-view from… I am who I am, be damned if it upsets you or makes you uncomfortable. And my Aunt Donna, his rock, she’s kind of amazing, too. Her love, support and drive are inspiring. A teacher for years, she set Addie up with all the fun stuff while accepting oxygen deliveries, getting towels for Addie and I to swim, her beaming smile never fading.

#aisforadelaide #family #LPAsd2014 #sandiego #losangeles #travel

There are some days that are really hard. For everyone. I have a family who has taught me, and continues to do so, that there are way more rainbows than rain if we look for them. I am thankful that we got to Cali this summer… for the sun, sand, friendships, education, family.

Have you done a big summer vacation this year? What was your favorite part?

Happy Marvelous Monday, Reader! I hope you have a beautiful week!

Comments

  1. says

    I have been following you like a stalker! Seriously. I love this post, what a great recap and wonderful images of your beautiful family. I’ve actually never been to CA in the summer on a vacation. We took the boys to Disney this year (and girl, but she slept a lot of the time!). It was something we really needed. To escape from the normalcy of life and just be together.
    Love you girl and all that you are and all that you do. You’re a true inspiration.
    Audrey McClelland recently posted…Mission: runDisney #ESPNatDisneyMy Profile

  2. Robin (Masshole Mommy) says

    You are an amazing mom and such an advocate for Addie. She is really lucky to have you for a mom!

  3. Shauna says

    Oh my goodness, what a great experience you had… I am so happy you shared it with us. Our summer has been filled with camps and swim team. Everything comes to an end soon and I am traveling to see my baby sister who is having a baby on Thursday! EEK! So excited…

  4. says

    I read and re-read every word of this post. Your never-faltering love and quest for knowledge empowers everyone around you. You are a light, a beacon, a swirl of love, a rainbow of a zillion hues. I lived in a suburb of San Diego as a child (6- almost 9 years old) when my Dad was in the Navy. My Mom still talks about the light there, the light… like it was always light. Thank you for your advocacy and love… xo
    Sharon – MomGenerations.com recently posted…6 Simple Garden Ideas to get kids to “stop and smell the flowers”!My Profile

  5. says

    What a true inspiration you are. I am so glad you got a lifetime pass to change all your lives. Being an advocate and a mother can wear a Mother out and every time I read you I feel more inspiration in one post then you can possibly imagine. You got this girl and I am proud to follow you. Glad you had such a great trip and got to see your uncle.
    Laura (Another Cent Saved) recently posted…Refreshing Summer Iced Drink with Keurig Brew over IceMy Profile

  6. Pam says

    My daughter has been wanting me to go to an Ehlers Danlos convention with her. After reading about how helpful the LPA convention was to your family, I’m thinking I need to. It’s great that you learned so much about how to help her!

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