Whatever it takes to win the battle
In support of
Sadie Long
View Support Registry
Sadie Long
I get asked a lot "how are you doing?" and I usually have the same 'nod and smile' and say 'We're okay'. Keep it simple. I don't know how to say "I've become a general in this war against heart failure and waiting. My mornings are spent battling the kitchen and trying to present even the smallest crumb as appetizing, my days are spent trying to remind her to slow down while also creating engagement, while my evenings are spent inhaling caffeine in the hopes that one night she might actually go to sleep." I feel like a new parent all over again, sleep is lacking, food is in increments at random times, there's constant fussing and discomfort as she tries to learn her body and understand her feelings and the reactions- but this time I can't swaddle her (yes I've tried), and she's quite opinionated about, well, everything.
Sadie is on multiple heavy medications. I try to break up her morning and evening doses into a three hour span for her so they don't all sit on her stomach and cause her to just crash and feel like ick for hours (Been there, done that, burned the t-shirt), I've also been trying to let Sadie sleep as much as she can in the morning. She likes to wake up around 7:30-8, so I've scheduled her first medications at 8am. The first does is the only mercy she gives me. The next three hours are a delicate battle of me trying to sing goldfish into her mouth or dawn my armor and offer actual eggs and pancakes or try to sneak bites into her mouth while she's distracted and takes them out of routine. I have crafted many tactics in this particular battle. Now I can hear you asking (or saying to yourself but trust me I've thought them too) "Give her the meds without food" or "she'll eat eventually" or "give them to her later" and I can promise you- George Washington would not approve, those are not sound plans for this particular siege. Medications on an empty stomach are- messy, and Sadie without medication is- not ideal. And she has to take these medications multiple times a day- it's all in from the sun up to midnight. She's eight, she's fighting for her life, and she just doesn't feel good- if I have to airplane the jello to her lips to get her meds in her then pin me with my wings and clear the airspace.
Throughout the day is my favorite time with her, I come armed with a cup of coffee and on occasion have been able to consume it. Some days Sadie feels good and she wants to paint and craft and this almost always results with paint on the floor and our clothes and her feet and glitter in corners of rooms I didn't even know she went into. She'll craft like Da Vinci on a mission and then need to snuggle and rest for a bit. As soon as she's recharged she always asks if we can play a board game, and usually by mid afternoon she'll hit me with "Mom I'm hungry" and almost everyday I almost cry when I hear that line. Occasionally she'll eat a good meal, most of the time she just wants to devour a bag of goldfish and a drink and her mid day meds go down the easiest.
Every good solider knows the importance of a battle buddy. By early evening is when my battle buddy always shines. There's mystery goo in the play room, there's glitter in the dogs hair, there's uno reverse cards in the refrigerator, there's half eaten toast and barely sipped cups all over the house- and I'm exhausted. Will always comes to the fight with paper towels, clorox, hugs and snacks. Just when I find my half full cup of coffee he sits me down and takes the girls out for a wheelchair ride around the block, or sets up an indoor movie theatre for them with a projector and popcorn, or sets up mario kart for them so Sadie can snuggle me (one of her favorite comfort pass times) and I can just sit for a moment.
The evenings are long, we have to repeat the food battle with evening medication and half the time just pray that they stay down and she can get some sleep. Some nights Sadie becomes her best at night- asking to eat every ten minutes, wanting to watch movies and snuggle. I try to stay awake for these moments, I don't even care that it's late- any good moment for her is one that we celebrate.
This is just a one battle- and I'll fight it every single day for her- every sip, every bite matters- and I'll celebrate the victories. So if we've got to follow up with popsicles, paint faces to look like doggies, or put on minnie ears and take a walk in order to get some food down- then hot dog friends, lets go.
Sadie is on multiple heavy medications. I try to break up her morning and evening doses into a three hour span for her so they don't all sit on her stomach and cause her to just crash and feel like ick for hours (Been there, done that, burned the t-shirt), I've also been trying to let Sadie sleep as much as she can in the morning. She likes to wake up around 7:30-8, so I've scheduled her first medications at 8am. The first does is the only mercy she gives me. The next three hours are a delicate battle of me trying to sing goldfish into her mouth or dawn my armor and offer actual eggs and pancakes or try to sneak bites into her mouth while she's distracted and takes them out of routine. I have crafted many tactics in this particular battle. Now I can hear you asking (or saying to yourself but trust me I've thought them too) "Give her the meds without food" or "she'll eat eventually" or "give them to her later" and I can promise you- George Washington would not approve, those are not sound plans for this particular siege. Medications on an empty stomach are- messy, and Sadie without medication is- not ideal. And she has to take these medications multiple times a day- it's all in from the sun up to midnight. She's eight, she's fighting for her life, and she just doesn't feel good- if I have to airplane the jello to her lips to get her meds in her then pin me with my wings and clear the airspace.
Throughout the day is my favorite time with her, I come armed with a cup of coffee and on occasion have been able to consume it. Some days Sadie feels good and she wants to paint and craft and this almost always results with paint on the floor and our clothes and her feet and glitter in corners of rooms I didn't even know she went into. She'll craft like Da Vinci on a mission and then need to snuggle and rest for a bit. As soon as she's recharged she always asks if we can play a board game, and usually by mid afternoon she'll hit me with "Mom I'm hungry" and almost everyday I almost cry when I hear that line. Occasionally she'll eat a good meal, most of the time she just wants to devour a bag of goldfish and a drink and her mid day meds go down the easiest.
Every good solider knows the importance of a battle buddy. By early evening is when my battle buddy always shines. There's mystery goo in the play room, there's glitter in the dogs hair, there's uno reverse cards in the refrigerator, there's half eaten toast and barely sipped cups all over the house- and I'm exhausted. Will always comes to the fight with paper towels, clorox, hugs and snacks. Just when I find my half full cup of coffee he sits me down and takes the girls out for a wheelchair ride around the block, or sets up an indoor movie theatre for them with a projector and popcorn, or sets up mario kart for them so Sadie can snuggle me (one of her favorite comfort pass times) and I can just sit for a moment.
The evenings are long, we have to repeat the food battle with evening medication and half the time just pray that they stay down and she can get some sleep. Some nights Sadie becomes her best at night- asking to eat every ten minutes, wanting to watch movies and snuggle. I try to stay awake for these moments, I don't even care that it's late- any good moment for her is one that we celebrate.
This is just a one battle- and I'll fight it every single day for her- every sip, every bite matters- and I'll celebrate the victories. So if we've got to follow up with popsicles, paint faces to look like doggies, or put on minnie ears and take a walk in order to get some food down- then hot dog friends, lets go.
Comments
Trish LeClere
Tom Giddens
Kira Bramlett