Born 13 weeks early, Allie has had complications since the womb. Now 7, she has been diagnosed with 37 conditions, including cerebral palsy and several diagnoses related to her gastrointestinal system. In just four years, she has had 13 surgeries, 3 central lines, 13 attempts at PICC lines, more than 32 non-surgical procedures that required sedation, and countless ER visits and admissions. In her young life, Allie has spent as much time in the hospital as out of the hospital. And as her mother shared with us in a letter, below, Team IMPACT has done for Allie what no doctor could.
"Allie is currently experiencing what is arguably the best health she has ever been in. Ever. Not without bumps, including admissions, the past 8 months have been an uphill ride for Allie. She is tolerating tube feeds directly into her small intestine via her jejunostomy tube. She is able to accept just over 50% of her entire diet this way. In addition, her stomach is allowing for 3 blended diet bolus feeds via her gastrostomy tube. And if that wasn't something to sing about, Allie is also allowing several hundred calories by MOUTH! Something she hasn't done in years, something that in the past was always accompanied by vomiting and pain so fierce that she would lay in the bed for days following small snacks.
Days, weeks, months and then years. Year after year passed and Allie made no improvement. She was put on to TPN (total parental nutrition). Her body was shutting down. She couldn't gain weight. She was making no progress. The doctors gave us no hope, a multi organ transplant was recommended. Allie was in hospice and palliative care, that was no different, she was admitted when she was 2, but now the paper work that we were seeing stated things like "not expected to live to adulthood" or "nothing more medically, quality of life care recommended." The doctors had given up on "saving" her, they just wanted to enjoy the life that she had and limit her pain. The doctors couldn't save her, they could only make her comfortable.
Still, there was a change happening. Something the doctors couldn't order or do for us. Something deeper than medicine. Hope was there in the most amazing way.
October 2015, Allie and I were introduced, to what I know now as the "cure". It wasn't a magic pill or an infusion. It wasn't a new medication, or a new specialist. We were not going in for another procedure, scan, or surgery. We were going to practice.
Practice. Yes, you read that right. Allie and I were headed to lacrosse practice with the most amazing group of young women I have ever had the privilege of meeting. The team members and coaches at Randolph-Macon College's Women's Lacrosse Team, with the help of Team IMPACT, had drafted Allie shortly after celebrating her 6th birthday and that's when our world began to change.
I saw Allie change.
Now before I go any further, I want to make it clear that I know lacrosse isn't a magic cure. Being a part of this team isn't going to change Allie's prognosis. Even with the remarkable change in Allie's health, she still isn't expected to grow up and grow old. She is an amazing warrior who is fighting a battle within her own body like few others know. I know and I believe that if God wanted to change it He could. I also believe that no matter how many days Allie is here, it is He that laid the path for her and it is He that is doing work in her life, no matter how long or how short.
I am watching a change occur in my child that I never thought would or even could happen. I had accepted what I "knew" to be God's will for not only my child's life, but as His will for my life as her mother. We would take what we had, no matter how good or how bad, all the highs and all the lows and give glory and thanks for what He allowed us to share with this amazing person I called my daughter.
There is a special connection amongst teammates. A bond that a parent cannot share with a child. An understanding that a sibling cannot share. When you are a teammate you are more than players on a team, more than sisters, more than family. You become one with 20-30+ people you share a love of a sport with. You know what they think, you know where they are on the field without looking and you know that off the field those same teammates have your back and will lift you out of the darkest pit.
Death. Pain. Darkness. Alone. That was our pit.
Don't get me wrong. Allie was and is a happy child. She laughed daily. She gave big hugs. She played. She enjoyed her life. Had we never meet her team, she still would have been a happy child. I was her team. I was all she needed. Right? Wasn't I? There wasn't something out there that I couldn't give her that would make her quality of life better, was there?
There was. They were the thing I couldn't give her. They were the ones that could connect to her on a level that I as a parent could never reach, medical child or typical child. They were the ones that could reach that part of Allie that I didn't even know was there.
I have sat back and watched (its own reward if I do say so myself) as Allie blossomed. As her energy grew. Her stamina grew. Her smile grew. It wasn't an overnight difference, here we are almost 2 years later and I am looking back seeing the change.
Never once has Allie's team pushed her to do something she was uncomfortable with, but without saying a word they are the driving force behind Allie pushing herself. Through therapies and surgeries I have watched Allie push herself harder that she ever has before.
"I do it for my team. You tell my team I do it." These are words Allie speaks daily now.
Despite pain so great it would bring an adult to tears. Allie pushed through, for her team. Learning to re walk after surgery so she could get back on the field, with her team. Physical therapy and falling a dozen times an hour trying to learn to squat with her lacrosse stick, for her team. Trying to sit up after 16 hours in an operating room undergoing major abdominal surgery just to be up, with her team. Occupational Therapy, Speech Therapy, Feeding Therapy, doctors visit after doctors visit. They all came right back to something she could do or have to be with her team.
So there it is. A group of young women saved my daughter just by letting her be part of the team. I watch these girls interact with my 7 year old and I can only imagine they have no true understand of what they are doing. How could they? They know Allie is sick. They know her prognosis. They don't know how they truly inspire her to give her all even when she physically has no more to give. They can't know that one hour of practice with Allie playing Red Light, Green Light or Duck, Duck, Goose exhaust her to the point of her passing out on the way home and sleeping for 24 hours straight. They don't see the preparation with medications and feeds and fluids that go into coming out to a game. They see Allie. Just Allie. Just their tiny teammate. Number 32 who loves to go out on the field for the starting line up and scream "Go Macon" the 2 hours they are running up and down the field for the game. They see the little girl who sits or stands and calls out to the goalie when she is all alone on her end of the field. They see Allie who squeals when it’s time to give High 5s at the end of the game.
I see it. I see how they saved her. I see how they gave a 7 year old a reason to fight, not just live and love but fight. They have taught her how to fight for the things she wants, even when she doesn't know that she is fighting. Allie changed after getting drafted to her team. The change that happened within her was deeper than any doctor could ever reach. Deeper than I could go. Deeper than she could ever get to herself. Her team took her to a place that saved her life.
One day will be her last. I don't know when. No one can. One day I will kiss her for the last time, hug her for the last time, tell her I love her for the last time. One day will be the last time I hear the most infectious laugh there ever was or could ever be.
But today I know. Today I see. Today I wrap my heart around the knowledge that a lacrosse team was the medicine that she needed to live again. To really live. To live like children should. To forget about the medicine and the therapies, the iv's and the doctors. Today I know what saved Allie when the doctors couldn't.
Thank you, Team! And please know and take with you the understanding that no matter where you go in life, or what happens to Allie in the life to come, know that YOU made the difference. You saved her. You do matter. You do make a difference. You have changed our family’s life and created a memory that we will carry with us long after you all graduate and move on to have your own families. Memories that we will carry long after Allie has completed her life and purpose here on Earth. You. You are the reason she lives now. You are what saved my baby girl."
Amanda Jones, mother of Allie, matched with Randolph-Macon Women’s Lacrosse