Dwarfism is something that I go back and forth in my head with the this doesn’t define my life/this defines my life argument. It comes down to this: while dwarfism is not my life, my children are. Because my parents always gave me every opportunity to learn more about myself (I went to DC for a week-long leadership summit in high school, multiple summer camps, etc.), I feel like I want to do the same for Addie. But, I am also just a mom. I have a desire to know more, be more, and do more. I want to give my children every ounce of understanding, compassion and care. I look to my community to help me with this. The LPA Conference being one of these amazing tools in my mom bag.
The LPA Conference is a yearly event I hold near and dear. As to be expected, when you get a group together of one interest or commonality or another, you find that the one thing you thought would bring you together, does not. For us, that was dwarfism.
I totally thought, we are all in this together… but looking back 36 months post-diagnosis, there is no this. This isn’t even a thing. So what brings me together with this organization are other parents navigating the proverbial system, friends to help guide me, and lots of amazing advocates. Sure, I love to help a cause, but what I really love is a fight (even a peaceful one). So I am fighting like a champ for my sweet Adelaide- fighting for her to have the best health, education, and opportunities we can afford her!
This year, unlike the past 2 years, we will not be attending the LPA Conference. It is called National, but really it’s international- and that amazes me. There are people who have come from other countries to learn more and be a part of a group that may be shunned or underrepresented in their country. Neither here nor there, we are not going this year. Addie would need an [expensive] plane ticket, I am pumping for a family, and we are house hunting. None of these things is conducive to travel, and so we stay… but that’s given me time to look over a few budgetary things and realize that the LPA Conference means a heck of a lot more than dollar signs. It’s an experience that is unattainable elsewhere for it’s medical knowledge, parental support, workshops, and fair-ground. Addie has been feeling deterred lately- claiming that she gets left behind- often telling me the kids don’t want to play with her… but I know that’s just not true. I know that the kids of similar ages are just faster because they are bigger. It’s not you, baby, I say.We go to the LPA Conference because Addie gets to make friends who are on the same level- no one calls her a baby, or pushes her. No one tells her how big her head is. No one asks me if I think her legs look different, or if I’ve taken her to the doctor, or if I’m sure she’s little, or if she will grow out of it.
And… maybe that’s a vacation for me. It gives me a chance to be on the same level as other parents. A time when I don’t have to smile when the parents yell, “WAIT FOR ADDIE!” At the top of their lungs- do I tell them it’s OK, that’s life? Do I thank them?
It’s hard to discern the needs from the wants, and figure the cost of being at an event verses the savings, but when you’re outside looking in, the picture is 20/20. And the cost is always worth it. The LPA Conference is a need for us, as it is for many- for the interaction as much as the medical aspect. Our travels to Delaware to see the docs are far more costly than the week of LPA Conference- where seeing the doctors is included. The relationships- for us with parents, and for Addie, and next year (in Boston!), for Millie, are invaluable. As a family, we choose to go to LPA Conferences so that we can have a vacation (DC and Cali were both awesome!), meet new friends and learn. Absorb our community and the money we spend to do all of that is worth it right there.
The LPA Conference is an invaluable experience to me… and, it’s true, I cannot wait for Boston because it’s local, which means we may also be able to take an out-of-state vacation- but I also cannot wait for 2018 in Colorado, for which we are planning a family vacation. The conference is so much more than medical, or emotional, or “convention”-like. It’s an opportunity to travel! The conferences are situated all over the country so that everyone can get to one without a flight, hopefully a few times in their membership. They are in cities with so much more to do than stay at the hotel.
A friend of mine with achondroplasia, around my age wrote this on her Facebook… and it made me realize, I would surely keep bringing Addie to regional and national events as much as possible- and am so thankful to have been given a lifetime membership.
We had a few ask today about what an LPA Conference means? What are they worth? And this is purely from the heart – they are worth FAR more than I can explain, but I’ll do my best.
So many of my life memories were made at LPA Conferences. I didn’t go to my first until I was 14, and even as I grew up in a family of LPs, I was overwhelmed as I walked in the door. I was suddenly just another LP in the crowd, unknown, and forced to make my way. That never happened. There were no comments, stares, or secret glances.. which are super obvious. My body image shot through the roof in a positive way – fat thighs got nothing on Achons.. we all had thick thighs, big ol’ heads and yet different looks. I made new friends, mingled with a few folks I knew from CA Regionals and made memories. Then went home and had to deal with the real world. The post conference blues are no joke. I was back to being the different one in the crowd, remembered for my height alone, and was made aware of my height by ignorant peers. Granted I was a happy teen and comfortable in my skin, but the LPA world during a Conference is so different than the everyday world.
I went to my second when I was 17, and we all remember when Sandy bashed her head against the spa bricks and really made use of those MAB professionals – their advice, ER for staples. Good thing I have the big ‘ol Achon head, as I didn’t feel a thing. Thanks to Joanna for overseeing my care that week – those guardianship forms came in handy and you’re always the best nurturer! Was back in action later that evening and had to reassure friends that I was fine, and danced my heart out that night. Then my third, I was 18, Boston… need I say more? Oh and I met Gabe on the very last day.
Each Conference was a vacation, a privilege, a luxury.. I saved as a young adult to be able to attend each one. They were worth that much to me. I skipped a few, and was upset when I wasn’t able to go, but I got over it and tried to make special visits to see other LPs and attended more activities locally.
Now, I see the other side of Conferences and know that I am helping to plan another happy moment for a young teen, another body image win for a young adult, another overwhelming happy moment for a new parent, and another family reunion for the veterans. I have met the best people through each Conference and heard so many stories. Becky, pulling you away from your parents in Boston (or was it SF?) was the best.. and I still can’t reach the straws at Starbucks. Drew, your laugh is contagious and you and April are still needed at the banquet tables.. can you pass the salt? Great post Conference memories too, BUSTing up just thinking about them. And I loved our discussions about LPA’s positive social community rather than the medical curing stance in other communities. THIS is what we strive for. Steve, we can’t forget you in the bunch – thankful you put up with us. Lauren, we met at a Regional but I still love when we join up for the National Conferences – we get each other, when we need breaks from the crowds, just want to people watch, and you’re the best at Banquet night beautifying! Mikey, the Chex Mix was still my favorite memory with you.. and Kacie, you have done wonders with the Rainbow Social! Proud Supporter of everything you do and rights for everyone.
Each year, I am able to meet so many new parents too. All children are adorable, but there’s something extra cute about LP kids. It’s great to see the parents thrive and their passion for the community. That’s how we move forward.
Thanks to everyone who makes each Conference happen (Sheryl, Marge, Juliann, Vicky, Ron, Gary) and thanks to all the veterans who made it possible for me to attend my first few, you paved the way. Colleen – you’re wonder woman, plain and simple. Joanna, you have made it possible for us to build upon each year and learn from the best.. your foundation is pretty tough and holding us all together. And Michael – you rock our world, literally, and you are a great father.
Each person, each volunteer, each and every attendee brings so much to the table. Each Conference doesn’t have a financial worth that anyone can afford, the Conferences are a community. This community is one I am thankful to be a part of. Thanks Mom (Mimi) and Dad for bringing another difference into this world and allowing me to be a part of something kind of spectacular.
So, there is it, and the truth of it is that vacations are expensive. And LPA Conferences are vacations that we choose to take for educational purposes! I wanted to share a few ways that we save for the conferences, and if you check out our past experiences (just search for LPASD2014 and LPADC2013) there are other tips of how to save some money on your trip (like do some local grocery shopping instead of eating out)!
1. Kitchens Fund: (From the LPA website) –> The Kitchens Fund for First Time National Conference Attendees is available to all current LPA members who are first time National Conference Attendees. Each year LPA is pleased to provide $8,000 – $10,000 in Kitchens Fund Grants. Funds are limited, and LPA tries to help as many people as possible. Each year, LPA is pleased to provide grants which typically range from $150 – $300 per recipient to help defray costs. The amounts can vary from year-to-year based on funds available.Since funds for travel are limited and LPA tries to help as many applicants as possible, total expenses are not covered. Partial travel expenses OR a complimentary hotel room for a few nights, OR meal expenses are examples of a typical award. No monies will be awarded until the applicant is actually at the conference, therefore, conference reservations and travel arrangements should be made in advance. This award is a reimbursement.
2. GoFundMe: These pages seem so plentiful these days, but they are great ways to ask for the gift of membership, conferences, or regional events. It’s hard to ask for help, but asking for the gift of experience instead of physical things for birthdays, anniversaries, etc. is a great idea! I love giving friends gifts of experience!
3. Penny pinching: So this is how we do most stuff around here, but it really pays off when we do this on a quarterly basis. Because I work from home, my savings is like that of a child- spend, save, rainy day– except it’s save, spend, mental health. That translates to RETIREMENT, CLASSES FOR THE KIDS, and VACATION/DATE NIGHT/MASSAGE/WINE. Every single dollar I spend comes from my checking account, and I always round up in my checkbook. I then balance out my book quarterly, and take the savings and apply it to a savings account (I love CapitalOne360 because I can’t just go to the bank and take it out).
I hope you give yourself the opportunity to experience an LPA Conference, or regional event… get to as many workshops as possible, but enjoy the vacation! And please, share how you afford vacations and conferences you want to attend! I would love to share your tips, too!