Maddi’s Bag – Year 3

 

Imagine for just one minute that you have a child who has a traumatic brain injury and post traumatic stress disorder. Imagine you have two other young children who need your time and attention. Imagine you are a wife, a sister, a daughter, an aunt and a friend to many people who you love and also need your time and attention. Now imagine taking the time to reach out and help other people, even people you haven’t met, or might never meet. I don’t know that I could do it. I don’t know that I could find it in me to find the time, or the strength, or the emotional reserve. It takes an extraordinary type of individual to give so much to other people, while busy giving so much in their own family. Jenny Raimondo is one of my best friends, and Jenny is EXTRAORDINARY.

 

Just like her mom, Maddi is EXTRAORDINARY. Maddi is the youngest daughter of Scott and Jenny Raimondo, sister to Sammi and Ella Raimondo. This past year Maddi learned to ride her bike without training wheels and she conquered her fear of going under water in a pool. These are all fairly common normal milestones for an average 5-year-old kid. Maddi is not your average 5-year-old kid, in fact she’s not even 5 years old. She is 7, and working very hard on trying to make up the past 2 years of her very young life. Maddi’s summer as a 5-year-old was spent in a series of surgeries. Maddi’s summer as a 6-year-old was spent recovering and remembering. Maddi’s brain had to hit pause and now it has been able to hit play. Only it doesn’t pick up right where it left off, and the story going forward is going to change. but they are so very grateful that her story was not stopped altogether.

On Easter, 2014, on an island off of Mexico, Maddi suffered a tragic fall from a balcony. They were taking this family photo with their cousins just moments before a life-altering misstep. Jenny locked eyes with Maddi as she helplessly watched her fall. She didn’t even know if Maddi was alive when she reached her below. By the grace of God, Maddi survived what could have been a deadly fall, but not without suffering from broken bones, skull fractures, and internal injuries. Getting the outside of Maddi’s body healthy again took many surgeries and lots of hard work, but there was still a long way to go before they could determine and repair what happened inside her body, specifically within her brain.

When the brain suffers a traumatic injury it essentially stops time. It stops because it goes into survival mode, advanced actions can’t be processed and new ones can’t be learned. The brain is too busy using its reserves for everyday basics, like waking up each day and working so very hard on things that were once second nature.  This is not a broken arm that can be reset and healed. There is no “good as new.” This isn’t a concussion that can be relieved with rest. This is chronic and it’s a chameleon. What worked one day may not work the next. Retrieving information, processing information and organizing that information is the equivalent of putting your brain through a marathon, so going to school can mentally feel like trying to run a marathon 5 days of the week.

Maddi’s traumatic brain injury (T.B.I.) is joined by its awkward and unpredictable buddy, Post Traumatic Stress Disorder (P.T.S.D.). When there is a fire drill at school it is common for younger children to feel scared or anxious, even if they know it is a drill. When Maddi hears sirens her heart, her mind and her body take an express train time machine back to the day she suffered from her fall. No parent wants to replay or revisit this moment in their mind and the victim themselves is no different. There are certain triggers, some expected and some not expected that can cause Maddi to feel a pain and anxiety that none of us could possible imagine. We can’t imagine it because we aren’t Maddi. Her fall and her injuries can’t place her into any existing formula. No two brains are alike so no two brain injuries are alike. No two reactions to a traumatic stress event are alike. There are no guidelines and there is no way to predict what the future will look like. Normal is redefined, because whatever existed prior to the injury will never be exactly the same.

School has proven to have its own set of challenges. Getting a baseline starting point for academic progress is like trying to pin down water. It has taken a tremendous amount of time, hard work and countless meetings with Maddi’s school to create an Individualized Education Plan that would fit Maddi’s unique situation. Testing situations have to be modified, contact sports restricted, and an aide is needed to help navigate unfamiliar or possible anxiety producing situations.Jenny is constantly educating herself through research, meetings and phone calls in order to properly advocate for Maddi and her needs. It is a huge challenge to treat something you can’t see, Maddie may look healed on the outside but there is a long way to go on the inside. Jenny’s wish for Maddi is to teach her to advocate for herself, without feeling self-conscious or helpless, so that she can go through school feeling as normal as possible.

 

It took a full 2 hours to get Maddi from the island where she fell to a hospital in Cancun. It would take another 36 hours to find a way to financially staff a plane to fly Maddi to the Children’s Hospital of Philadelphia. Landing on the roof of that hospital, Scott and Jenny felt hope. Maddi is alive today because of the nurses and doctors at C.H.O.P.  in The Pediatric Trauma Surgical Unit.   Saying thank you over and over again didn’t feel like quite enough, so Jenny and her family have decided to show the doctors, nurses, patients and the patients’ families just how grateful they are. Gratitude, Faith and Hope led Jenny to create Maddi’s Bag.

 

MADDI’S BAG solely supports the Maddi’s Bag Child Life Fund for the Trauma Unit at The Children’s Hospital of Philadelphia. Every child admitted to the unit receives a “comfort bag” loaded with age appropriate activities to ease and minimize stress to new young patients and families.
In addition, we sponsor the Trauma Nurse of the Month award which recognizes a valuable and dedicated clinician that plays such a critical role in recovery.
100% of the money raised will go directly to these incredible programs.

It has been a long road of surgeries, immobility, tests and rehabilitation for Maddi, luckily we are blessed with a wonderfully supportive family and a strong community who in Maddi’s time of healing surrounded her with a plethora of arts & crafts, reading books, paints, puzzles and cards- all things that helped her feel normal and keep busy. Most importantly though, these things provided her with activities she and her sisters and friends could re-connect over. Coloring took over TV watching,painting was more fun than tag,sand art was better than swimming and painting nails opened conversations of feelings and pain. We want to forever pay forward the blessings we received during our time of need so we created MADDI’S BAG.

– Jenny Raimondo, founder and president of Maddi’s Bag.

A traumatic injury to a loved one does not occur in isolation, the entire dynamics of the family are altered. Maddi’s sisters had their own feelings of fear, sadness, and shock. They flew home with other members of the Raimondo family, all the while not knowing what was going to happen to their sister or when they would see her again.They too, have demonstrated just what EXTRAORDINARY girls they both are.

So what can YOU do? How can YOU make a difference? Support the 3rd Annual Maddi’s Bag Multi- Vendor Shop 4 C.H.O.P, held at the home of Jenny and Scott Raimondo. Admission is just $10 and gives you access to an amazing group of shops, vendors and services.

 

This Thursday, November 3rd, Jenny will host the 3rd annual Maddi’s Bag Shop 4 Chop.

Where?

The Raimondo Family Home

62 L’Enfant Court, Glen Mills

When?

Thursday, November 3rd

 9am – 2pm and 5pm – 10pm

How?

Tickets can be purchased for $10 at the door. 

Please use this opportunity to do some early holiday shopping, with products for everyone on your list and nearly every age, you do not want to miss out. You don’t have to worry about knowing anyone, as everyone there is all there for the same reason. They want to help. The first year Maddi’s Bag earned $5,000 in donations. Last year it went up to $10,000. Jenni’s goal this year? She’s going for $20,000. One person can make a difference. Your contribution goes directly into purchasing the items that go into Maddi’s Bag, making an immediate impact on a child’s life. Simple activities like coloring, games, and books help a child to pass the time and feel “normal” as they spend hours in the hospital going through tests and surgeries.

 

Can’t make the event but would like to make a donation? Please use this link HERE to donate directly.

 

*Insider Tip – It Takes A Village

Jenny is not exactly what you would call a shy person. When she walks into a room she makes everything a little lighter and brighter. Jenny was one of my roommates in college and like most college kids we didn’t really know what we wanted to do when we “grew up.” Through tragedy Jenny has found her purpose and I know that nothing will stop her. Maddi’s sisters Ella and Sammi are equally as driven, raising awareness and donations through events at their school, dance studio and gymnastics teams. Jenny keeps a huge supply of pens with her at all times. She had the pens printed with the Maddi’s bag logo and it’s become her goal to accidentally “leave” a pen wherever she goes. She wants to go beyond the walls of the hospital and become a resource for families everywhere who have a loved one with Traumatic Brain Injury.  When Maddi fell,  Jenny and Scott didn’t know where to turn and who to talk to. Having learned so much through this experience Jenny wants to be able to reach out to comfort other families affected by a Traumatic Brain Injury, especially those who may be feeling lost, confused, and overwhelmed. A small amount of effort can lead to an enormous impact, there is no doubt that the Maddi’s Bag organization is changing lives.

 

Want more information on T.B.I.?

Lost & Found: What Brain Injury Survivors Want You to Know

Life With A Traumatic Brain Injury — Acknowledging The Truth And Moving On

 

Follow Maddi’s Bag on Facebook HERE.

 

Thank you so much for reading this very special post.