Tonight, I did my normal nighttime routine. Put the kids to bed and flopped on the couch to scroll through my Facebook feed.
The first post was from a friend, another brain tumor patient's mom. It wasn't just any Facebook post, it was THE post. The post I've seen too many times in my news feed. The post that says hospice has been called in. And just like every other friend who has lost or is losing a child, she requests "hold your babies a little longer and tighter each night".
Immediately as I finished reading the post, my daughter began to cry. I went back to her room and asked "what's wrong?". Her response, like every night when she cries out, "I want you hold me". Most nights, I tell her that I can't hold her but I will sit in her room for a few minutes or I will sing her a song. Tonight was different. Tonight, I snatched her up and hugged her close.
We got in the rocking chair and as tears flooded my face, I tried to sing to her. The song I sang is the same one I sang every night when she was a baby - Hush Little Baby. When my son was first born, I started singing it to him and realized halfway through I didn't know the full song so after "if that looking glass gets broke", I added "mama's gonna buy you a Cherry Coke" and then made up ridiculous lyrics to end the song.
While I sang tonight, I thought of the lyrics - both the real ones and those I made up. It's all about a mama who will stop at nothing to make her child happy. It begins "Hush little baby, don't say a word, mama's gonna buy you a mocking bird..." and continues to offer more and more gifts if the previous doesn't work. As I was singing, I thought about my friend and her daughter. For the past few years, all she's been doing is jumping through hoops to try to save her. Trying different medicines, radiation, chemotherapy. Everything she could to help her baby.
When I finished the song, Tillery looked up at me and asked, "Why you crying?". I said, "Because I love you so much." She just looked back at me and said, "Oh, I love you so much."
I held her longer and hugged her tighter, just as my friend requested and then sang one last song - Turn Your Eyes Upon Jesus. It's the song we sing every night at bedtime and her little voice chimes in with me:
"Turn your eyes upon Jesus
Look full in His wonderful face
And the things of Earth
Will grow strangely dim
In the light of His glory and His grace."
Tonight, I am sad for my friend but I am so thankful for a loving God who has promised us an eternal life with Him. If we turn our eyes to Him, the things of this world will be dimmed and all we will see is His glory and His grace.
Hug your kids and teach them to turn their eyes to the One who can give them everything they need. The mocking bird. The diamond ring. The looking glass. Even the Cherry Coke.
For those who MUST know, here are my lyrics to Hush Little Baby. Enjoy!
Hush little baby, don't say a word, mama's gonna buy you a mocking bird.
If that mocking bird don't sing, mama's gonna buy you a diamond ring.
If that diamond ring turns brass, mama's gonna buy you a looking glass.
If that looking glass gets broke, mama's gonna buy you a Cherry Coke.
If that Cherry Coke goes flat, mama's gonna buy you a ball and bat.
If that ball and bat aren't good, mama's gonna buy one made of wood.
If that wood gets eaten by mites, mama's gonna buy you an airline flight.
If that airline flight gets booked, mama's gonna buy you some food that's cooked.
If that food is not very tasty, mama's gonna take it away very hasty.
And once that food is taken away, Til and Mommy will go and play.
Tuesday, May 17, 2016
Friday, May 6, 2016
Confessions of Super Mom
Once my child was diagnosed, everyone started commenting on how strong I am and what an amazing mother I am. Some days those compliments are encouraging but many others, they just feel like a lie.
I have often said that whatever your hardest mom thing is, it's still valid and it's still really hard. My hardest days might look harder to you but in reality, we all experience things on a relative scale to what we already know.
Before my daughter was diagnosed with a brain tumor, she had only had well child visits at the doctor. However, my son had pneumonia twice when he was about a year and a half old and both times resulted in ER trips. Those ER visits were a terrifying blur for me. Remembering holding him while they tried to start an IV, my heart still aches. It was the absolute hardest thing I had ever experienced. Ever.
Now, with my daughter, when we have to go to the ER, I take a shower before, pack a snack, and come in like I own the place. I walk to the desk and tell them that we need to go straight back to a room because she has a compromised immune system. When the nurse comes in, I give her the specifics on her port, the best supplies to use, and how to hold it and her to get it on the first stick. I ask for toys, drinks, snacks, whatever I want, as though I'm some A list celeb that can make crazy demands. I don't fear the hospital anymore because it's become a comfortable place.
I have taken my daughter to the operating room 12 times. I have slept on the blue vinyl pullout couch/bed more nights than I care to remember. I have held my daughter while someone put stitches in and when someone took them out. I have had to give her medicine and give her injections. I have been trained on how to maintain a PICC line, a port, and a feeding tube. I have been covered in vomit, blood, urine, poop, stomach contents, and cerebral spinal fluid.
But, it's all relative.
To those who think I'm super mom, to those who think I'm doing something you could never do, let me give you my list of limitations.
I cannot volunteer in my kid's class. There are too many kids, they are very loud, someone has a runny nose, and quite frankly, I'm scared.
I cannot do Pinterest. Any of it. Baking, crafting, decorating, none of it. When someone shares a Pinterest idea with me, I just shut down.
I cannot juggle multiple kids' schedules. Last summer my son took swim lessons 2 days a week and my husband had to take him because I could not remember that on top of my daughter's busy schedule. I don't know what I will do if they both decide to become active!
I cannot plan a birthday party. My son turns 5 Monday and his party is tomorrow. I verbally invited a few people this week and today I gathered some generic party stuff. Know what the theme is? Birthday party.
I cannot clean my house. I'm a stay at home mom who's house looks like a bachelor lives here.. I wish it wasn't so messy. I just don't know how to do it. Seriously, to clean, I just move the mess from one room to the other, or sometimes, from one counter to another.
I cannot make plans. I would love to have people over (the kind of people who overlook my messy house) but I just never invite them. I would love to have a girl's night out but I never think to plan one. I would love to do play dates, I just need someone else to plan it.
We all have the things that we just don't think we could ever do. Often, we just hang up on those things and we forget all the awesome things we can do. Come on ladies, we birthed these people! (Or adopted them, in which case you jumped through some crazy hoops and just getting fat for 9 months probably looks easy!) You keep them alive, daily! Some days, you don't think you will survive, and then you do. You survive so that you can do another unsurvivable day the very next day!
So, to the mom who has medically fragile kids, I salute you, Super Mom!
To the mom who is the Room Mom, I salute you, Super Mom!
To the mom who has more kids than hands, I salute you, Super Mom!
To the mom who has lost a child, I salute you, Super Mom!
To the mom who is still in pajamas, I salute you, Super Mom!
To the mom who reads "Hot dog, Hot dog, Hot diggity dog" and sings it, I salute you, Super Mom!
And, to all the moms who are surviving this thing called motherhood, I salute you, Super Moms!
I have often said that whatever your hardest mom thing is, it's still valid and it's still really hard. My hardest days might look harder to you but in reality, we all experience things on a relative scale to what we already know.
Before my daughter was diagnosed with a brain tumor, she had only had well child visits at the doctor. However, my son had pneumonia twice when he was about a year and a half old and both times resulted in ER trips. Those ER visits were a terrifying blur for me. Remembering holding him while they tried to start an IV, my heart still aches. It was the absolute hardest thing I had ever experienced. Ever.
Now, with my daughter, when we have to go to the ER, I take a shower before, pack a snack, and come in like I own the place. I walk to the desk and tell them that we need to go straight back to a room because she has a compromised immune system. When the nurse comes in, I give her the specifics on her port, the best supplies to use, and how to hold it and her to get it on the first stick. I ask for toys, drinks, snacks, whatever I want, as though I'm some A list celeb that can make crazy demands. I don't fear the hospital anymore because it's become a comfortable place.
I have taken my daughter to the operating room 12 times. I have slept on the blue vinyl pullout couch/bed more nights than I care to remember. I have held my daughter while someone put stitches in and when someone took them out. I have had to give her medicine and give her injections. I have been trained on how to maintain a PICC line, a port, and a feeding tube. I have been covered in vomit, blood, urine, poop, stomach contents, and cerebral spinal fluid.
But, it's all relative.
To those who think I'm super mom, to those who think I'm doing something you could never do, let me give you my list of limitations.
I cannot volunteer in my kid's class. There are too many kids, they are very loud, someone has a runny nose, and quite frankly, I'm scared.
I cannot do Pinterest. Any of it. Baking, crafting, decorating, none of it. When someone shares a Pinterest idea with me, I just shut down.
I cannot juggle multiple kids' schedules. Last summer my son took swim lessons 2 days a week and my husband had to take him because I could not remember that on top of my daughter's busy schedule. I don't know what I will do if they both decide to become active!
I cannot plan a birthday party. My son turns 5 Monday and his party is tomorrow. I verbally invited a few people this week and today I gathered some generic party stuff. Know what the theme is? Birthday party.
I cannot clean my house. I'm a stay at home mom who's house looks like a bachelor lives here.. I wish it wasn't so messy. I just don't know how to do it. Seriously, to clean, I just move the mess from one room to the other, or sometimes, from one counter to another.
I cannot make plans. I would love to have people over (the kind of people who overlook my messy house) but I just never invite them. I would love to have a girl's night out but I never think to plan one. I would love to do play dates, I just need someone else to plan it.
We all have the things that we just don't think we could ever do. Often, we just hang up on those things and we forget all the awesome things we can do. Come on ladies, we birthed these people! (Or adopted them, in which case you jumped through some crazy hoops and just getting fat for 9 months probably looks easy!) You keep them alive, daily! Some days, you don't think you will survive, and then you do. You survive so that you can do another unsurvivable day the very next day!
So, to the mom who has medically fragile kids, I salute you, Super Mom!
To the mom who is the Room Mom, I salute you, Super Mom!
To the mom who has more kids than hands, I salute you, Super Mom!
To the mom who has lost a child, I salute you, Super Mom!
To the mom who is still in pajamas, I salute you, Super Mom!
To the mom who reads "Hot dog, Hot dog, Hot diggity dog" and sings it, I salute you, Super Mom!
And, to all the moms who are surviving this thing called motherhood, I salute you, Super Moms!
Thursday, April 28, 2016
Making Our Normal Normal
We've tended to keep our physical therapy at home. The leg braces and gait trainer that assist my daughter in standing and walking are usually replaced with cute pink princess shoes for "going out". Recently, as she's started doing more standing and walking, the equipment has left our home and started traveling with her.
This week, something amazing happened.
I made a decision to take her "as she is" to pick up my son from his school. We arrived early to allow time for her to make her way from the parking lot to the classroom. She had her braces on her legs and her bright yellow gait trainer for support. She would take a few steps and then stop to talk about the wind in her hair or the birds she could hear in the trees. Slowly, slowly, she got all the way to the main doors. There were a few others approaching the doors with us and they all smiled and patiently waited while Tillery worked her way through the opening and into the hallway.
As she proceeded down the hall, parents and children encouraged her and cheered her on as she headed for her brother's classroom. It warmed my heart to hear the support and see people genuinely happy to see her getting around. My fears had been that people would gawk at her and kids would make fun but instead, all I saw was love.
Leaving the school, another mother told me that her daughter used to have a gait trainer. She said her daughter had hydrocephalus and a VP shunt (just like Tillery!) and that it took her a long time to get the hang of walking. She encouraged me by sharing that now her daughter is 5 years old and is well adjusted and you wouldn't know the obstacles she has overcome. I really appreciated her sharing her daughter's story and was thinking of how encouraging everyone had been as we made our way out of the school.
Tillery walked all the way to the car and I got the kids buckled into their seats and the gait trainer put back in the back. As I looked back at the school, I saw the mother who told me about her daughter coming out with her child. I was amazed to see her daughter was a child I had recently spent time with on a field trip. She was right, I never would have known the struggles she faced earlier in life. I smiled as I thought of my own daughter and the obstacles she has overcome that people around her would never know.
The day I took my daughter out with her braces and gait trainer, I embraced the life we are living. I accepted that this is what it takes to build strength and make advancements. In a world where we sometimes feel different, I made our normal normal.
This week, something amazing happened.
I made a decision to take her "as she is" to pick up my son from his school. We arrived early to allow time for her to make her way from the parking lot to the classroom. She had her braces on her legs and her bright yellow gait trainer for support. She would take a few steps and then stop to talk about the wind in her hair or the birds she could hear in the trees. Slowly, slowly, she got all the way to the main doors. There were a few others approaching the doors with us and they all smiled and patiently waited while Tillery worked her way through the opening and into the hallway.
As she proceeded down the hall, parents and children encouraged her and cheered her on as she headed for her brother's classroom. It warmed my heart to hear the support and see people genuinely happy to see her getting around. My fears had been that people would gawk at her and kids would make fun but instead, all I saw was love.
Leaving the school, another mother told me that her daughter used to have a gait trainer. She said her daughter had hydrocephalus and a VP shunt (just like Tillery!) and that it took her a long time to get the hang of walking. She encouraged me by sharing that now her daughter is 5 years old and is well adjusted and you wouldn't know the obstacles she has overcome. I really appreciated her sharing her daughter's story and was thinking of how encouraging everyone had been as we made our way out of the school.
Tillery walked all the way to the car and I got the kids buckled into their seats and the gait trainer put back in the back. As I looked back at the school, I saw the mother who told me about her daughter coming out with her child. I was amazed to see her daughter was a child I had recently spent time with on a field trip. She was right, I never would have known the struggles she faced earlier in life. I smiled as I thought of my own daughter and the obstacles she has overcome that people around her would never know.
The day I took my daughter out with her braces and gait trainer, I embraced the life we are living. I accepted that this is what it takes to build strength and make advancements. In a world where we sometimes feel different, I made our normal normal.
Saturday, April 23, 2016
4 Things in 4 Years til 40 Years
Today marks 4 years until 40 years for me. Forty seems to be such a milestone and often people make goals or a bucket list of things to accomplish. I decided to go simple:
4 Things in 4 Years til 40 Years
1. Make The TIL Foundation a reality. A busy life with two kids makes getting the momentum behind this foundation much harder than I thought. In the Fall, Luke starts Kindergarten and we hope to start Tillery into some sort of day program that will allow me some uninterrupted time to focus on making this launch really happen.
2. Raise $100,000 for pediatric brain tumor research. This seems lofty but I figure if I set an easily attainable goal, I'll allow myself to underperform. Reality is, I've always been an overachiever so if I set a high goal, I'll work as hard as I can to get there. (Note, this goal can only be accomplished with the assistance of my super awesome family and the support of everyone reading this and everyone you know. I'll be calling on YOU for your time, your money, your resources, whatever. Get ready!)
3. Write a book. I've said many times over the years that I may write a book one day and now seems like a good time. For friends who have been with me through the years, you know I have plenty of material to pull from so perhaps a series is in order!
4. See our family be on the healthy side of this diagnosis. Having a sick kid is hard. Having a sick kid who looks healthy can be even harder. The day to day challenges aren't always visible to outsiders and even sometimes we forget how different our situation is from the norm. We have made it through some really hard times and some kinda hard times and now I'm ready to coast. We know there are a few more surgeries and chemotherapy in the near future but by this time next year, we may be through all of that. We have a very good chance of spending less time in medical offices and more time on playgrounds, ball fields, school hallways, etc.
I feel every single bit of my age. I have earned these years. I'm ready to make the next ones really meaningful. Who knows where this may lead? I'm ready to jump out there and try some things.
Thank you to my awesome and supportive husband who believes in me. Thank you to two crazy kids who inspire me to make this world better. Thank you to all of you who encourage me and our family as we go through life.
(If you are interested in getting the ball rolling on #2, you may make a donation to The Cure Starts Now online here or you may send a check to The TIL Foundation; 9508 Dayton Pike; Soddy Daisy, TN 37379.)
4 Things in 4 Years til 40 Years
1. Make The TIL Foundation a reality. A busy life with two kids makes getting the momentum behind this foundation much harder than I thought. In the Fall, Luke starts Kindergarten and we hope to start Tillery into some sort of day program that will allow me some uninterrupted time to focus on making this launch really happen.
2. Raise $100,000 for pediatric brain tumor research. This seems lofty but I figure if I set an easily attainable goal, I'll allow myself to underperform. Reality is, I've always been an overachiever so if I set a high goal, I'll work as hard as I can to get there. (Note, this goal can only be accomplished with the assistance of my super awesome family and the support of everyone reading this and everyone you know. I'll be calling on YOU for your time, your money, your resources, whatever. Get ready!)
3. Write a book. I've said many times over the years that I may write a book one day and now seems like a good time. For friends who have been with me through the years, you know I have plenty of material to pull from so perhaps a series is in order!
4. See our family be on the healthy side of this diagnosis. Having a sick kid is hard. Having a sick kid who looks healthy can be even harder. The day to day challenges aren't always visible to outsiders and even sometimes we forget how different our situation is from the norm. We have made it through some really hard times and some kinda hard times and now I'm ready to coast. We know there are a few more surgeries and chemotherapy in the near future but by this time next year, we may be through all of that. We have a very good chance of spending less time in medical offices and more time on playgrounds, ball fields, school hallways, etc.
I feel every single bit of my age. I have earned these years. I'm ready to make the next ones really meaningful. Who knows where this may lead? I'm ready to jump out there and try some things.
Thank you to my awesome and supportive husband who believes in me. Thank you to two crazy kids who inspire me to make this world better. Thank you to all of you who encourage me and our family as we go through life.
(If you are interested in getting the ball rolling on #2, you may make a donation to The Cure Starts Now online here or you may send a check to The TIL Foundation; 9508 Dayton Pike; Soddy Daisy, TN 37379.)
Wednesday, April 13, 2016
Sometimes You Gotta Feel It
You know the feeling when you went through your first breakup and you felt like everything in your life was falling apart? You were sad and hurt and you couldn't imagine ever moving past those emotions, but people kept telling you that things would get better.
Remember being pregnant and feeling like you were as big as a house and how uncomfortable you were? Unsolicited people everywhere would come up and say, "You're going to miss this special time."
And when your kids were babies and you were up and down all night long and all you wanted was sleep and people would tell you "they're only little once"?
Remember the thoughts in your mind about those people? Even if what they said was their way of trying to be helpful, sometimes it just wasn't. Sometimes you wished everyone would leave you alone and let you live in a hole. But, of course, as soon as everyone would leave you alone you would start to wonder where they all went and why no one cares.
Having a sick kid is like the first breakup, 40 weeks pregnant, and the first month home from the hospital every single day.
I want people to read my mind. I want people to know exactly the right thing to say or I want them not to talk at all. I want people to be funny when it doesn't feel right and to cry with me at weird times. I want to speak the running commentary in my head and for people to understand what's going on.
To all of my friends and family who I have stared at blankly, not responded to, or seemed agitated with, this is what I'm dealing with.
People love to remind you to be positive and that things will get better. People love to be a cheerleader and believe in miracles. People love getting in your corner.
What people don't always know is that some days, I need to be down. Some days, I want to feel the sadness, the disappointment, the hurt, or the loss. Some days, I want to do nothing. Some days, I want to eat chocolate peanut butter straight out of the carton. (Ok, every day I do that.)
Recently, my daughter's surgery was postponed. I've been mentally preparing for this surgery for 6 months. I was prepared for a major surgery with some pretty big risks. About 2 weeks ago, we changed the scope of the surgery to be less risky and I was so relieved! I could not explain that relief to anyone because I had not fully explained the fear that I felt for this surgery. I had a very true and very real fear that I may lose my daughter or lose some part of who she is in that operating room. For months, it's been weighing on me and in one short phone conversation, that weight was lifted.
Once the scope changed, my mindset changed. I was so ready to get this surgery done and to move on with recovery and the next phase of treatment. Then, last week, she spiked a fever from a quick bug and it affected her white blood count. For her safety, surgery has been postponed.
I don't have a rescheduled date yet, I can't start planning for it, and everything I had planned has changed. So now, my mind is racing with all the "what ifs" and scheduling concerns. I'm not happy with the new options on rescheduling because now I'm wide open but postponing falls into a busy time on my calendar. I had finally gotten to a place where I was at peace with surgery and now everything is changing and the uneasiness is back.
So, of course, the comforting words have come. Let me throw out a few things.
- I rationally can understand that surgery when she isn't well is a bad idea.
- I know that her health is more important than my calendar.
- I understand that God has perfect timing and He will be just as present with us on the new date as He would have been on the original date.
Let me also throw out something else.
- It still sucks.
Remember that when you are looking at the big picture and trying to provide comforting words, there is still a person living in that situation right then. They can't always pull back and look at the big picture because they are scraping by in the day to day. Yes, it's awesome to find the positives in a yuck situation but sometimes that person needs to feel the yuck before they are ready to zoom out and move past it.
So, let them cry into their pillow over lost love.
Let the mom-to-be gripe about how she's outgrowing maternity clothes. (Seriously, it's a thing.)
Let the new mom recount the last time she slept for 'x' amount of hours straight.
And for me, just let me whine about my calendar!
Remember being pregnant and feeling like you were as big as a house and how uncomfortable you were? Unsolicited people everywhere would come up and say, "You're going to miss this special time."
And when your kids were babies and you were up and down all night long and all you wanted was sleep and people would tell you "they're only little once"?
Remember the thoughts in your mind about those people? Even if what they said was their way of trying to be helpful, sometimes it just wasn't. Sometimes you wished everyone would leave you alone and let you live in a hole. But, of course, as soon as everyone would leave you alone you would start to wonder where they all went and why no one cares.
Having a sick kid is like the first breakup, 40 weeks pregnant, and the first month home from the hospital every single day.
I want people to read my mind. I want people to know exactly the right thing to say or I want them not to talk at all. I want people to be funny when it doesn't feel right and to cry with me at weird times. I want to speak the running commentary in my head and for people to understand what's going on.
To all of my friends and family who I have stared at blankly, not responded to, or seemed agitated with, this is what I'm dealing with.
People love to remind you to be positive and that things will get better. People love to be a cheerleader and believe in miracles. People love getting in your corner.
What people don't always know is that some days, I need to be down. Some days, I want to feel the sadness, the disappointment, the hurt, or the loss. Some days, I want to do nothing. Some days, I want to eat chocolate peanut butter straight out of the carton. (Ok, every day I do that.)
Recently, my daughter's surgery was postponed. I've been mentally preparing for this surgery for 6 months. I was prepared for a major surgery with some pretty big risks. About 2 weeks ago, we changed the scope of the surgery to be less risky and I was so relieved! I could not explain that relief to anyone because I had not fully explained the fear that I felt for this surgery. I had a very true and very real fear that I may lose my daughter or lose some part of who she is in that operating room. For months, it's been weighing on me and in one short phone conversation, that weight was lifted.
Once the scope changed, my mindset changed. I was so ready to get this surgery done and to move on with recovery and the next phase of treatment. Then, last week, she spiked a fever from a quick bug and it affected her white blood count. For her safety, surgery has been postponed.
I don't have a rescheduled date yet, I can't start planning for it, and everything I had planned has changed. So now, my mind is racing with all the "what ifs" and scheduling concerns. I'm not happy with the new options on rescheduling because now I'm wide open but postponing falls into a busy time on my calendar. I had finally gotten to a place where I was at peace with surgery and now everything is changing and the uneasiness is back.
So, of course, the comforting words have come. Let me throw out a few things.
- I rationally can understand that surgery when she isn't well is a bad idea.
- I know that her health is more important than my calendar.
- I understand that God has perfect timing and He will be just as present with us on the new date as He would have been on the original date.
Let me also throw out something else.
- It still sucks.
Remember that when you are looking at the big picture and trying to provide comforting words, there is still a person living in that situation right then. They can't always pull back and look at the big picture because they are scraping by in the day to day. Yes, it's awesome to find the positives in a yuck situation but sometimes that person needs to feel the yuck before they are ready to zoom out and move past it.
So, let them cry into their pillow over lost love.
Let the mom-to-be gripe about how she's outgrowing maternity clothes. (Seriously, it's a thing.)
Let the new mom recount the last time she slept for 'x' amount of hours straight.
And for me, just let me whine about my calendar!
Friday, January 8, 2016
Choices
I heard a story yesterday that has stayed with me. A family travelled from Alabama to Ohio for treatment for their daughter at Cincinnati Children's Hospital (the same hospital that cares for my daughter). While their daughter was recovering from surgery, hospital staff found the mother dead in the child's room from an apparent drug overdose. The father was passed out in the bathroom but was revived by the team that was supposed to be attending to his sick child. Both parents had guns found on them. The mother was gone and the father was arrested. The child was left alone.
There are many reasons to be bothered by this story...the drugs, the guns, the children who will suffer. The thing that I keep thinking about is what was going on in the minds of these parents. What makes you think you need to have a loaded gun with you when you enter a children's hospital with your baby? What makes you think you should bring needles and heroin with you into your child's hospital room? Those questions I cannot answer.
There is one question that I can address, though...What makes you do something extreme, crazy, or even possibly out-of-character when your child is in the hospital?
I haven't crossed a line to the extent of these parents but as a parent of a child that has spent a lot of time in the hospital, I've done and said things that I later wished I had not. Watching your child endure surgical procedures and medical treatments and miss out on normal childhood development and playtime is very trying on parents. It takes a toll on you and pushes you to near breaking points. Everyone handles the stresses and pressures that go along with this life differently but the thing that gets you through one day and wakes you up to start the next is a choice. A choice to see either the horrible, awful, and hurting that surrounds you or the good, kind, and loving. They are both there.
This choice is not easy. Every day the choice is before you. Sometimes multiple times a day. I'll be honest, I don't always make the right choice. Sometimes the hard is too hard and I feel like I'm drowning. Sometimes it feels like its more than I can handle, more than anyone could handle. There are times that you want to not have to feel that anymore.
Drugs are not the answer. Guns are not the answer. Hurting your child is not the answer. Hurting yourself is not the answer.
The choice is the answer.
I've met people who endure so much pain as they watch their child suffer. In many cases the suffering lasts for weeks, months, or even years. Sometimes the children do not survive and those parents must continue on without their children. These people can still smile, still laugh, and still find joy.
There have been two Ronald McDonald House mamas who were living in the house at the same time as me who were arrested in the hospital for endangering their child. One of those moms I talked with daily. I ate meals with her and she was a friend to me at a time when things were very hard. I would have never guessed that she was doing the things that were videotaped of her doing. Her life was hard, her child was sick, and she made a choice.
I'm not defending the people who have done some very bad things. I'm saying that there is something that happens when you are pushed to the edge. In a split second, you don't always know what choice you will make.
So what helps you make the right choice?
Surround yourself with loving and supportive people. If you don't think you know anyone like that, keep looking until you find them. You may also need to let go of the people who are not loving and supportive.
My command is this: Love each other as I have loved you. Greater love has no one than this, that he lay down his life for his friends. John 15:12-13
Constantly be on the lookout for blessings around you and focus on them. Even in some of the hardest and lowest times with my daughter, I could always see blessings. If you start noticing them during your good and neutral times, it will help you find them in the hard times more easily.
The Lord bless you
and keep you;
the Lord make his face shine upon you
and be gracious to you;
the Lord turn his face toward you
and give you peace.
Numbers 6:24-26
Know that even if the worst case scenario happens, you can handle it. We have been told on a few occasions that our daughter might not survive for one reason or another. That is my worst case scenario. The way I handle that is to constantly focus on the fact that this world is a blip on the radar of God's plan for us. We are promised Eternal Life if we believe in Jesus Christ and follow Him. Eternal Life means that an Earthly death is not our end and does not have to be feared.
For my Father's will is that everyone who looks to the Son and believes in Him shall have eternal life, and I will raise him up at the last day. John 6:40
You always have a choice. And the best part is, if you make the wrong choice, it's not the end either.
Repent, then, and turn to God, so that your sins may be wiped out, that times of refreshing may come from the Lord. Acts 3:19
There are many reasons to be bothered by this story...the drugs, the guns, the children who will suffer. The thing that I keep thinking about is what was going on in the minds of these parents. What makes you think you need to have a loaded gun with you when you enter a children's hospital with your baby? What makes you think you should bring needles and heroin with you into your child's hospital room? Those questions I cannot answer.
There is one question that I can address, though...What makes you do something extreme, crazy, or even possibly out-of-character when your child is in the hospital?
I haven't crossed a line to the extent of these parents but as a parent of a child that has spent a lot of time in the hospital, I've done and said things that I later wished I had not. Watching your child endure surgical procedures and medical treatments and miss out on normal childhood development and playtime is very trying on parents. It takes a toll on you and pushes you to near breaking points. Everyone handles the stresses and pressures that go along with this life differently but the thing that gets you through one day and wakes you up to start the next is a choice. A choice to see either the horrible, awful, and hurting that surrounds you or the good, kind, and loving. They are both there.
This choice is not easy. Every day the choice is before you. Sometimes multiple times a day. I'll be honest, I don't always make the right choice. Sometimes the hard is too hard and I feel like I'm drowning. Sometimes it feels like its more than I can handle, more than anyone could handle. There are times that you want to not have to feel that anymore.
Drugs are not the answer. Guns are not the answer. Hurting your child is not the answer. Hurting yourself is not the answer.
The choice is the answer.
I've met people who endure so much pain as they watch their child suffer. In many cases the suffering lasts for weeks, months, or even years. Sometimes the children do not survive and those parents must continue on without their children. These people can still smile, still laugh, and still find joy.
There have been two Ronald McDonald House mamas who were living in the house at the same time as me who were arrested in the hospital for endangering their child. One of those moms I talked with daily. I ate meals with her and she was a friend to me at a time when things were very hard. I would have never guessed that she was doing the things that were videotaped of her doing. Her life was hard, her child was sick, and she made a choice.
I'm not defending the people who have done some very bad things. I'm saying that there is something that happens when you are pushed to the edge. In a split second, you don't always know what choice you will make.
So what helps you make the right choice?
Surround yourself with loving and supportive people. If you don't think you know anyone like that, keep looking until you find them. You may also need to let go of the people who are not loving and supportive.
My command is this: Love each other as I have loved you. Greater love has no one than this, that he lay down his life for his friends. John 15:12-13
Constantly be on the lookout for blessings around you and focus on them. Even in some of the hardest and lowest times with my daughter, I could always see blessings. If you start noticing them during your good and neutral times, it will help you find them in the hard times more easily.
The Lord bless you
and keep you;
the Lord make his face shine upon you
and be gracious to you;
the Lord turn his face toward you
and give you peace.
Numbers 6:24-26
Know that even if the worst case scenario happens, you can handle it. We have been told on a few occasions that our daughter might not survive for one reason or another. That is my worst case scenario. The way I handle that is to constantly focus on the fact that this world is a blip on the radar of God's plan for us. We are promised Eternal Life if we believe in Jesus Christ and follow Him. Eternal Life means that an Earthly death is not our end and does not have to be feared.
For my Father's will is that everyone who looks to the Son and believes in Him shall have eternal life, and I will raise him up at the last day. John 6:40
You always have a choice. And the best part is, if you make the wrong choice, it's not the end either.
Repent, then, and turn to God, so that your sins may be wiped out, that times of refreshing may come from the Lord. Acts 3:19
Saturday, January 2, 2016
Blessings of Sick Kid World
When our daughter was diagnosed with a brain tumor a little over a year ago, we entered a new world - Sick Kid World. Sick Kid World is very different than the world I was living in before. While I would give anything to have never had to enter this world, I am grateful for the lessons I've learned and the bonds I've formed here.
In Sick Kid World, the parents are all supportive of each other. No one cares about bottle feeding vs. breast feeding, cloth diapers vs. disposables, spankings vs. time outs. We live in a world of life vs. death. If your child is making it, keep doing what works. We don't judge and we don't make fun of one another. We are supportive. We uplift. We encourage.
In Sick Kid World, the parents allow themselves to not be perfect. We don't have time or energy to keep up with the Joneses. Instead, we try our hardest to do all we have to do and try not to stress the rest. If someone comes by the house and dishes are piled in the sink, it's ok, it's life. If we never do a Pinterest craft, we're okay with that. Our families eat three meals a day but a few of those might be takeout. And, we may rarely wear make-up, jewelry, or real clothes, but we often wear a smile.
In Sick Kid World, others around us show us love. We get cards from friends and family but also complete strangers. We have a prayer network that is bigger than our friend network. When people learn that we have a child who is sick, they offer to help in any way they can. People are kind. Kinder than they ever have been before.
In Sick Kid World, the kids are kids. Often, as parents we say, "don't play with that", "don't do that", "don't run", "don't talk too much", "don't, don't, don't". In a world where our children spend too much time in hospitals and at doctor appointments, we cut them some slack to be kids. And it's not only the parents but others around them. I often have people from church come and tell me, "we love hearing your children play during church". Normally, noisy children can be seen as a distraction or annoyance but when people know of a sick child's story, they smile when they hear them laughing, playing, or even fighting with their brother.
I've formed the strongest bonds of my life with other members of Sick Kid World. In our previous lives, our paths may never have crossed and we may not have had much to talk about. In Sick Kid World, we strip away everything that matters in the "real world" and we are just our real, raw selves. We talk about more than just our sick children. We talk about the blessings we see around us, the things in our lives we are grateful for, and the hope we all share. We celebrate together and we grieve together. We are the truest form of real.
So yes, I have a sick kid, but I am richly blessed. My world is loving, supportive, kind, and encouraging. I wish that described everyone's world.
In Sick Kid World, the parents are all supportive of each other. No one cares about bottle feeding vs. breast feeding, cloth diapers vs. disposables, spankings vs. time outs. We live in a world of life vs. death. If your child is making it, keep doing what works. We don't judge and we don't make fun of one another. We are supportive. We uplift. We encourage.
In Sick Kid World, the parents allow themselves to not be perfect. We don't have time or energy to keep up with the Joneses. Instead, we try our hardest to do all we have to do and try not to stress the rest. If someone comes by the house and dishes are piled in the sink, it's ok, it's life. If we never do a Pinterest craft, we're okay with that. Our families eat three meals a day but a few of those might be takeout. And, we may rarely wear make-up, jewelry, or real clothes, but we often wear a smile.
In Sick Kid World, others around us show us love. We get cards from friends and family but also complete strangers. We have a prayer network that is bigger than our friend network. When people learn that we have a child who is sick, they offer to help in any way they can. People are kind. Kinder than they ever have been before.
In Sick Kid World, the kids are kids. Often, as parents we say, "don't play with that", "don't do that", "don't run", "don't talk too much", "don't, don't, don't". In a world where our children spend too much time in hospitals and at doctor appointments, we cut them some slack to be kids. And it's not only the parents but others around them. I often have people from church come and tell me, "we love hearing your children play during church". Normally, noisy children can be seen as a distraction or annoyance but when people know of a sick child's story, they smile when they hear them laughing, playing, or even fighting with their brother.
I've formed the strongest bonds of my life with other members of Sick Kid World. In our previous lives, our paths may never have crossed and we may not have had much to talk about. In Sick Kid World, we strip away everything that matters in the "real world" and we are just our real, raw selves. We talk about more than just our sick children. We talk about the blessings we see around us, the things in our lives we are grateful for, and the hope we all share. We celebrate together and we grieve together. We are the truest form of real.
So yes, I have a sick kid, but I am richly blessed. My world is loving, supportive, kind, and encouraging. I wish that described everyone's world.
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