I need you all to bear with me. I told you I had a story to tell but was saving it until we got home. Home seems a little ways off and my heart is heavy and my mind is turning to get it out. I am going to meander through this so just roll into the turns and I promise you will enjoy the ride.
Tuesday last week I took Larkin into the ED. First let me explain that ED is the Emergency Department. The name change has caught on among most health care professionals and those of us who frequent it. It’s not an emergency room. It is a department. It is huge, filled with doctors, nurses, paramedics and more often than not police officers.
The ED doctor was so amazing with me. He flat out told me he didn’t know what Lennox-Gaustaut, Infantile Spasms or the Ketogenic diet was. I like that because I don’t have time to deal with ego when her well being is on the line. She was admitted and Wednesday evening she was 50/50 to take home so I did. I told you all that I was wrong and she was lethargic and sick all Thursday so we came back to the ED on Friday.
I walked into the ED with Larkin. She was limp and obviously a very sick little girl. She was dressed in her purple PJ’s with a little bow in her hair. YES I TOOK THE TIME TO PUT A BOW IN. But I did it so she isn’t called a boy when she is naked. It’s the small things. Larkin is cute and she still seems babyish so people give me the look of sympathy, comment on the sweet little one so sick. I sat down at the desk to check her in and she vomits into a bucket while we are working on her papers.
Behind me I hear a loud voice. “I am trying” “It hurts” and I do mean loud. I can tell without turning around that the person who is yelling has cerebral palsy. The voice coming from a mouth and body twisted from nature’s path. I had noticed a family gathered in the triage room but I was balancing Larkin and I have learned to not stare. So I don’t turn around. I see others in the waiting room staring. I see the check-in clerk behind the one checking Larkin in, turning to stare. I watch them watching this family.
I watch them.
In a few short years that will be me in that triage room. It will be me being stared at because I have an adult child who might be hard to control/handle. My sweet girl might yell and be difficult. In fact I know she will.
It made me so sad as Larkin gets the ooo and ahhhs because she is small and cute and sweet. Although she yells and is difficult at this age it is different when it is an adult with a disability. Those parents in the triage room are just like me. They have walked the walk for years. They love their child with all their heart and soul. Yet they are stared at in a very different way than Larkin and I are.
Not fair is it. But as I tell Chase the fair is where we get cotton candy and corn dogs – it aint life. But it fuels my fire to build Larkin’s Place at the Y. Let’s take this family and their sweet loved child and put them into everyday life so that when they are in a medical situation those around them don’t stare and when they are in situations around town, they aren’t stared at.
I never turned around. I gave the family the privacy and respect they deserved. I hope that Larkin’s Place at the Y and the YMCA will teach others to do the same.
As we came up to the Pediatric floor on Tuesday night it was quiet. I simply can’t recall the time but it had to be between midnight and 1 a.m. Lights are turned down low and hallways and rooms are for the most part settled down. Of course nurses take vitals and blood and have to interrupt all night long but they make it the very best they can.
I was standing at the nurses’ station waiting for something for Larkin and I watched a father and his daughter walk the hallways. Dad was in his 50’s and daughter was in her late teens maybe her early 20’s. She had a developmental disability. They walked together as she listened to her CD player and dad was there by her side. It made me smile and although I would never interrupt a moment like that, I really wanted to tell them how they made my heart feel light.
That is Andy and Larkin in a few short years. Here within these walls we are safe and understood. It fueled my fire to build Larkin’s Place at the Y so that this father and daughter could walk the track or on the treadmill in a recreational setting vs hospital setting. To be safe and understood in our community.
This story makes me cry, rage in anger and frustration and fuels my fire as a mother. There are 3 little ones here that are sick. Larkin and two other little girls. One is probably 9 months old and the other is a tiny newborn. Larkin has 2 parents and is never left alone. The other 2 do not and are. Larkin has parents who would literally give ANYTHING to help Larkin’s development and to see her thrive. The other 2 do not. Larkin has a mother who did not drink, do drugs and does everything possible to ensure she is loved, supported and stable. The other 2 do not.
I had to listen to the mother of one of the babies scream and rant about taking her baby from the safety of the hospital. I had to watch as security and police were called. She subjected the entire floor to her stupidity and I know there are only 2 reasons why a mother is not allowed to have her child. Drug abuse during pregnancy or physical abuse to the child.
These other 2 little girls may very well be lost in life and that fuels my fire to ensure that the YMCA and Larkin’s Place are there so that perhaps they will find a refuge in love, support and programs that will help reshape the damage their parents cause.
I thank God that Larkin is mine. I thank God she isn’t in the hands of someone who would harm her or be careless with her needs. The week we have spent up here is a small glimpse into the world of others. It is a small glimpse at parents who think children and babies are trophies and they don’t know or care that it takes a lot of hard work, dedication, love and unselfishness. I pray for my girl daily and now I will add these two wee ones to our list. They are going to need all they can get.
Larkin’s blood work and sugars are still off. We need those to be better and her to keep fluids and food down before we can come home. I love Carle. I love these doctors and nurses. They are amazing people who see it all, hear it all and still have the compassion to want to help and heal.
I have to wonder if I am put in these situations to SEE why LP is so important. To renew my fire and resolve. I suppose it doesn’t matter why as long as I learn a lesson.