To Lifespan Partner, operators of Rhode Island and Hasbro Children’s hospitals.
Thank you.
When we came in for a pediatric MRI with the anesthesiology team, I expected more. So. Much. More. And beyond my expectations, I needed that something more to happen because I’m entrusting you with my child. My child who, for all intents and purposes, is special needs, with narrow airways and spinal compression and a bit of extra fluid in her brain, needs that. Just that.
I wish I could tell you what it is that I am looking for when I come in, but I cannot. Rest assured, my desires don’t extend too far past the correct paperwork or knowing which waiting room to frequent. But when those needs were not met, I let loose. I had to, because part of my job as a parent, as a writer, as someone with reach in social media, is to make change where change is due.
Often, for rare cases, change is not made. Research is not given much thought because there is not the reach and therefore not the money, and that translates in to not the care to do more, learn more or make that change. Often one-time procedures are just one bad experience and over. But I am confident this is not the case. When something (like MRIs for children with rare differences) isn’t a one-time procedure, it loses it’s rare definition in that family- such as ours. We as a community need to help bring light to what needs are not being met, and I am confident that change is on the horizon.
While Lifespan was in my sight-line a few weeks ago (HERE), I want to remind people that we can all help make a difference, and often the medical community to which we entrust our loved ones wants to be herald as the best… being the worst certainly does not keep a hospital open for patients.
So, thank you. Thank you for having our missing team member call us and assure us that you heard me. As a mother, a patient, a patron of your service… which needs to be the best care my daughter can receive.
She may be rare, but it’s not for her diagnosis… it’s for her personality, her drive, her spark. It’s for all the things we trust you to care for and protect.
Thank you for listening,
Keep up the advocacy!! It is essential! You rock Mama and DaDa! ❤️❤️❤️
Yes, please keep it up. Every voice counts!
Thank you!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Addie is lucky to have you. You are such an amazing advocate for her <3
I hope so- thank you!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
What a beautiful and touching letter!
Thank you for putting your voice out there.
You are such a fighter! You fight for your daughter. You fight for change. You fight to make the world a better place. Thank you so much for that!
Melissa Pezza recently posted…Why you should buy Tinkerbell and the Legend of the Neverbeast?! My Movie Review…
Yes, she is already making the world a better place! thanks again!
Amy Desrosiers recently posted…Enjoying a Few Rounds of Risk for PS3 Thanks to the Hasbro Game Channel
Thank you for your support!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I think it’s so cool that they listened to you! So many places just ignore what we have to say.
Courtney recently posted…St. Patrick’s Day Centerpiece
So true!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Unless people speak up, things don’t improve. It’s fantastic that you not only did that but that it made a difference.
Liz Mays recently posted…What Is March Madness?
Being an advocate for your child especially when it comes to their health and welfare is crucial. My oldest daughter has hydrocephalus (water on the brain) and we’ve been through numerous surgeries, MRIs, hospital stays, etc. I’m eternally grateful to the staff at Barbara Bush Children’s Hospital in Portland, Maine. Keep up the good work with your refusal to accept status quo. P.S. Your daughter is beautiful!
Jessica Harlow recently posted…Get all your bath accessories in one spot from The Bath Outlet! #thebathoutletgladyline
Thank you so much! I wish you and your daughter well!!! Addie is hydrocephalic as well, but it comes with her diagnosis- scary as hell, for sure!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
What a great letter to Lifespan Partner, keep up the good work!
heather meads recently posted…the break from blogging post
I’m so glad that you experience was better! And I’m glad you are fighting for your child!
Jeannette recently posted…Discovering Fun Easter Essentials & a Personalized Easter Pail Tutorial
I really admire you. When you see something wrong, you do something about it. You don’t just shrug and say, “Well, that’s just the way it is.”
Dawn recently posted…Unique High School Class Rings that Kids will Treasure for Years
Thank you, Dawn!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
What a great letter! Way to speak up!
lisa recently posted…Tinkerbell And The Legend Of The Neverbeast Review #NeverbeastBloggers
I’m so glad you didn’t put up with their antics. You are the mom and your child is important. I can’t believe we as parents still have to fit back so much. What is wrong with these people?
Sharon recently posted…Looking For Love In All The Wrong Places
Don’t stop talking about it; even a small group of people can make a huge change… all you need is this one person who will be willing to listed and pull all the correct strings for everything else to follow
agatapokutycka recently posted…What’s Cooking – Fresh Mushroom Soup
So true!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Good on you for creating change where it is needed! Keep up the great work!
Jennifer Corter recently posted…Positivity In Pain: Finding Joy And Happiness Despite Chronic Pain
This is beautiful! You truly make a difference through your voice and teaching. Every bit counts!
Jenn recently posted…10 St Patricks Day Cupcakes
You are an amazing advocate! Keep on doing what you are doing for your entire family!
You are so inspiring. A true advocate and a champion for your sweet daughter.
Good for you got advocating for your child- it’s so important.
Wendy recently posted…Getting Rid Of Stuff
This touched my heart. I love that you chose to acknowledge that you were listened to. Most people just complain and forget to say “thank you”……what a great mommy Addie has!!
Laurie – Steals and Deals for Kids recently posted…NUK Mash and Serve Bowl $7.79 {reg. $16.95}
I know that is true… I didn’t want to be someone who makes a fuss then forgets to say thank you!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I love this. You are doing great things!
Melissa recently posted…Hang with Robert Downey Jr. at the Premiere of Marvel’s Avengers: Age of Ultron
we HAVE to be the voice for our children! So glad you were heard and were respected as a mother!
Maggie recently posted…Wordless Wednesday: Giveaway!
As someone who has dealt with the medical community-countless doctors, specialists, treatments, hospitals, etc-I commend you and give you major kudos for being your child’s advocate. Advocacy is one of the most important things one can do for a loved one or a cause they’re passionate about and this letter just goes to show everyone you’re most definitely nailing it!
Kayla @ TheEclecticElement recently posted…5 Benefits of Pole Fitness & Free 30 Days of Yoga Offer
Thank you so much, Kayla,
Chelley @ A is for Adelaide recently posted…Marvelous Monday
So great they heard what you had to say. Glad it all worked out.
Debbie Denny recently posted…March Find The Good in Our World! #FindtheGood
Being upset with change and things of that sort just makes you a better mother! Keep up the great work!
Krista Blackburn recently posted…Jump Start Your Pets’ Healthy Lifestyle: Science Diet 10 Week Turnaround #ad #PerfectWeight
It is so nice to hear about a medical establishment listening to their consumers. Sadly, there are friends who’ve not experience that in their own lives (at different places around the globe.)
LauraOinAK recently posted…Experiencing the Benefits of Manuka Honey and Emu Oil from Koru Naturals
I think it is wonderful that they listened to what you had to say. Way to speak up mama.
Danielle H recently posted…MommyCon Chicago- Incredible Fun, Learning, & Encouragement in Parenthood
I am so glad you got a response!
M from K&M: The Stay-at-Home Life recently posted…A Range of Surprises
Great letter! Thank you for sharing
Cathy @ Our Mini Family recently posted…Gourmet Cookies with your Blog or Business Logo | The Baked Equation
Its so amazing how you keep giving a voice for your daughter. Just like her, your awesome.
Onica [mommyfactor] recently posted…Philadelphia Flower Show 2015 Preview and Events #FlowerShow
Every voice counts and keep keeping on! I am glad you got a response.
truly inspiring…thanks for sharing this sweet letter.
Dhemz Apdian – Dias recently posted…It’s World Read Aloud Day Today! | #ReadAndReflect #Staples #WRAD
What a touching and heartfelt way to let medical professionals know when they are doing something right, and I do believe it encourages them to strive for excellence and compassionate care even more. It’s good to spread the word when hospitals and such are setting a good example for others.
Yona Williams recently posted…Gift Guide: Diamond Alternatives
I hope it does push them- for sure! Thank you!!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I am happy the company reached out to you to let you know they heard you. It is so frustrating when things are not set up properly.
I just read your other post that you linked and wow, just wow! You are such an amazing mom and advocate for Addie. She is such a brave little girl. I’m so glad you got a response!
Trisha recently posted…Comment on Create a Digital Vision Board with your Kids! #StreamTeam by Onica [mommyfactor]
Thank you so much, Trisha!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
People can’t create change if they don’t know what’s going on. Sometimes all it takes is a voice to make them aware. Good for you for reaching out to them, and speaking up.
Rosey recently posted…#DialMiracleOil Product Giveaway from #PurexInsiders
So true! Thank you.
Chelley @ A is for Adelaide recently posted…Marvelous Monday
As a mother to a child that goes to Hasbro, I think it is wonderful that they made things right. We depend on their knowledge and place our children in their hands. It is the least they could do.
Amy Desrosiers recently posted…Enjoying a Few Rounds of Risk for PS3 Thanks to the Hasbro Game Channel
We do, indeed! <3
Chelley @ A is for Adelaide recently posted…Marvelous Monday
YOU are a wonderful advocate for your child…….and it was so nice of you to thank them. Many times we just complain when something is very wrong…..but to thank them when something goes right, that is a class act!
Debra @A Frugal Friend recently posted…Cinderella Movie Costumes and Glass Slipper at Pre Premiere Reception #CinderellaEvent
Awe- thank you. I would be too guilty to complain, get response then not thank them!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
sometimes we have to over advocate for our kids. Glad they called you back and helped you guys. I always love reading your updates.
It’s great that you spoke up. Change doesn’t happen if you keep quiet. You’re such a wonderful mom.
Janel (A Mom’s Take) recently posted…Must Have Books For Spring
I also think it is great that you spoke up. Your daughter is very lucky to have you as her mommy. 🙂
Stefani Tolson recently posted…The Cinderella World Premiere At The El Capitan Theatre #CinderellaEvent
You have to take care of your kids. I have done this before myself. I don’t blame you. I am glad that they tried to make things right. I think you did the best thing!
Coralie recently posted…Weekly Cleaning Checklist Printable
This is beautiful because we often read about negative outcomes and it’s equally important to say thank you when it’s due. TY! 🙂
We have been going through some difficult medical problems for my husband, and feel like our providers have dropped the ball on more than one occasion. From not listening to my husband when he was telling the doctor what he has been experiencing as far as symptoms go, to sending us to the wrong type of doctor for the problems that has been having, to us still waiting for a diagnosis after going to doctors multiple times and a wikipedia of tests since September 3, 2014, we feel much more like a money factory for them than a patient with feelings and needs. I hear you when you say your daughter’s special needs make her medical needs rare. I hope that you are changing that for her and for little ones like her.
Karen Eidson recently posted…Spring Cleaning? Get Organized With WoodTrac Closets #WoodTracSpring15 : The Installation
Oh Karen, that sounds like a terrible ordeal. I hope that you are getting the care your husband deserves. The medical community is wonderful, but there are certainly some WIDE gaps that need to be filled.
Chelley @ A is for Adelaide recently posted…Marvelous Monday