Liam the Lion Fund

Liam Love — Sunday June 19th 2016


Every day during the month of May, my father, Liam’s Grampa, made bowls in his pottery.  Like children, these bowls are one of a kind, made with love and in the moment. Rough around the edges these handmade stoneware bowls will be smooth and food safe inside. On June 19th, Father’s Day, My father and I hope that you can join us in the ISB Gallery of Rhode Island School of Design (55 Canal Walk, Providence RI) for Liam Love, a pottery sale to benefit the Liam the Lion Fund.

In addition to dozens of handmade unique stoneware bowls, the event will feature the unveiling of this year’s limited edition Olson & Son Hopyard t-shirt available for purchase in some sizes and orders for others, and also our brand new branded 12oz belgian beer glasses will be for sale.

Attendees will be treated to a retrospective exhibition of the wonderful paintings of Tom Sgouros! There will be light food, non-alcoholic beverages and even a few guitars around if you are so inclined to share a song! It promises to be a fun afternoon.

So come and celebrate Father’s Day with Liam, his father, and his father’s father. We hope to see you there, and if you know anyone who may be interested, feel free to share the link.

Special thanks to Susan Doyle, chair of Illustration at RISD and Michael Kolendowicz of the ISB Gallery for making this event possible.

 

 

The Luckiest.

On friday night Liam was the guest of honor at a pasta dinner fundraiser put on by my staff to benefit the Liam the Lion Fund. It’s the fund we have started in order to buy Liam a wheelchair accessible van. The only way we will be able to get a vehicle to handle Liam safely as he grows is to ask for help.

Asking for help is not something I do very well.

My staff however refused to even let me ask for help and while I was hiding behind stubbornness and pride, they were plotting and scheming behind my back to put on the most amazing pasta dinner. One that grew in scope to almost embarrasingly generous levels. By the time I was told about the event, food had been donated and room reservations made.  All of the sudden flyers and posters with Liam’s picture on them were popping up all over the hospital and complete strangers were stopping me in the hall to ask where they could drop off their gift donations for the raffle.

I have spent the past three weeks being humbled  and touched by the generousity of my co-workers more and more with each passing day.  The outpouring of support for my family in time, effort and money is truly unbelievable in every sense of the word.

I have had two days to compose my thoughts on the dinner/raffle but I am still at a loss. I still don’t have the right words to express my gratitude and thanks.  I’ve tried. I have three different posts started but I can’t quite make it fit.  I just wanted to acknowledge that it happened. I’ll post more composed thoughts later.

Right now I’m still smiling from ear to ear and basking in the knowledge that we really are the luckiest family in the world. I just wish I could express it better.

I’m supposed to be writing a speech

I’m supposed to be writing a speech.  I was recently asked by a commitee in the NICU where Liam was a patient to give a speech and answer some questions in order to help educate new NICU staff so they are able to appreciate the contribution that they make to families. Also to give the father’s perspective which is sometimes a little lost in a hospital named Women & Infants, but in a long term NICU stay the fathers are also effected and need support. In two days I’ll meet with a bunch of staff to give them the parents side of time spent in the hospital.

I’m not sure that I’ve ever mentioned that in real life I’m a food & nutrition manager in said hospital. It’s a situation that can at times be rewarding in that it keeps me close enough to help families effected by complex medical needs yet can also be suffocating in that I can never really escape the role of NICU dad. Running the cafeteria kept me fairly anonymous in the hospital — being the father to Liam did not.

But all of that is another post for another day.  I don’t have time to get into that right now.

I’m supposed to be writing a speech.

So I guess I don’t have time to blog about our trip on Friday to Dream Night at Roger Williams Park Zoo. A wonderful program at zoos around the world, Dream Night brings children with special needs, their families and their caregivers together for a private night at the zoo that is more intimate and interactive than any zoo experience I’ve ever seen.

With the height of Liam’s wheelchair and his compromised vision, the zoo on a normal day can be a difficult place to engage Liam. He’s not really going to notice the zebra or elephant 30 yards off in the distance. But at Dream Night, which is held at a time when the zoo is normally closing and with a limited attendance, Liam can be set up to see feedings of those big animals that are usually difficult to get close to. All of the photos in this post were taken with my cell phone just to give you an idea of how close we were allowed to get to some of these animals.
Last year we attended Dream Night but if I recall Liam slept through most of it and we saw little if any recognition when he was awake that he had any grasp of what was going on. This year though Liam stayed awake and alert and got only slightly fussy when his father kept inadvertantly turning the stroller and lifting its visor to nearly blind him with the light of the setting sun.

 

On Dream Night Liam was able to roll right up to zookeepers on hand with hedgehogs, owls, snakes and other creatures out of their cages and calm enough to be touched.

If I had time to blog tonight I would tell you about the south american porcupine that came really close to crawling right onto Liam’s lap before its keeper came in to stop her.

But I don’t have time tonight because I’m supposed to be writing a speech.

 

So since I’m writing a speech tonight I also don’t have time to tell you how amazingly well our Liam the Lion Fund Kickoff Spaghetti Dinner and Silent Auction (just kind of rolls off the tongue doesn’t it?) went yesterday. The turnout was incredible and everyone who attended showed us so much generousity and support that Liam will be riding safely around town in his wheelchair accesible van in no time.

I wish I had more time for blogging amongst all the speech writing that’s going on around here because I would use this space to thank the people who gave so much of their time and effort to make it such a success like my mom and dad and Karin’s mom and dad who were there to help set-up the event room and auction. My Aunt Donna, Aunt Carol, Brian, My Nan, and sister’s friend (and newest member of Team Liam) Beth for all of their help being waiters, waitresses, cooks, and dishwashers during dinner.  To all of the people who donated items to be auctioned off and to each and every person who attended an auction on a beautiful sunday afternoon solely to help my family.

And if I dont have time to blog about thanking them then I certainly don’t have enough time to blog about Liam’s Auntie Sandra (my little sis), without whom this event never would have happened. While Karin and I have thought about and talked about having a kickoff event for months and months we’ve usually got our hands pretty full around here. It was Auntie Sandra who came through with the to-do lists and the spreadsheets. She kept us on track with twice weekly meetings and did most of the legwork procuring items for auctioning and producing the ticketing paperwork. We can’t thank you enough Sandra. Are you any good at writing speeches?

 

So I’ll sign-off here. I’m sorry that there’s no real blog post tonight. There’s only so many hours in the day and as I’ve said….

I’m supposed to be writing a speech right now.

 

Spaghetti Dinners and Seizure Meds

Well, well, well behold the power of facebook.

To all of you who have found this blog because Karin linked it to the Liam the Lion Fund facebook page welcome and thank you for visiting. Hope you enjoy reading our story.

Yes, to anyone who has not received a facebook message from my wife, on June 5th we will be hosting the Liam the Lion Fund Spaghetti Dinner and Silent Auction at Riverside Congregational Church from 3pm-7pm.

Tickets are $8 in advance or $10 at the door.

Contact Karin{dot}Olson{at}gmail.com or search Liam the Lion Fund on facebook.

The fund will initially help us purchase a wheelchair accessible van to make Liam’s transportation needs possible as he grows bigger and bigger. A van will not only help with transportation to Liam’s countless Dr.’s appointments but also help with trips to the zoo, to the park, and to his Grammy & Opa’s house in New Jersey.

When Liam’s transportation needs are met the fund will help with any accessibility issues in our home. Any funds not used for Liam’s care and needs will be donated to charities and causes helping special needs children any where that we can help.

In addition to ticket buyers, donations of prizes for the silent auction would be greatly appreciated.

This event is only the first of many as we already have plans in place to make an announcement during the event for our next event.  It’s gonna be a barrel of fun so keep your fingers crossed that we get our ducks in a row in time for that.

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Followers of my Twitter feed will already know that over the past couple of weeks Liam has been weaned from a particularly complicated seizure medication. It was a wonderful help in Liam’s progress but its harsh side effects give us concern on how long a course of the med we should attempt. Now that Liam is older and bigger and the type of seizures that he experiences has changed we have more choices when it comes to meds. Choices that can give us freedom from the intense decline of motor skills and low muscle-tone that Sabril has given while helping relieve him of his infantile spasms.

Week 1 was a breeze, a drop of 25% of the dose and Liam handled that like a champ. No increase in activity at all. Week 2 however and another 25% drop and all hell broke loose for a few days. Two seizures severe enough to require diastat in three days with a general sense of twitchiness in between. On monday morning Karin spoke to Liam’s neurologist and we started Liam on one of those choices I talked about earlier. By lunchtime the new dose of the new med was on board and Liam was on his way to three seizure free days in a row.  A feat unseen in a fair amount of time. We are holding the wean from Sabril at the week 2 level and will continue at a slower pace until he is off of it completely.

I know better than to think that this new med will make that much of a difference in the long-term picture of Liam’s seizures. Seizure activity will be a lifelong battle and by the time we get the dosing dialed in on the balance between no-seizures and downright sedation, he’ll put on a few pounds and we’ll start the dosing game all over again. But for now, for today, and for this week we’ll take it as a win and say that we are currently fans of his new seizure med.  Ask me again in a week and my answer may change.

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