I started my first teaching job at Walters State Community College the same week I found out I was pregnant with Tillery. For 2 semesters, Tillery attended every class I taught right along with me. At the end of the year, my students left for fun filled summer adventures and I went home and put my feet up and await the arrival of our sweet Tillery.
This week I'm going back to teaching, but this time it will just be me. After having Tillery with me for every class I've ever taught and then spending the last 23 months dedicated to taking care of her, I'm going out on my own.
For these past few years, I've often thought of what it would be like to go back to working. On some days, I've longed for this day while other days I've feared it. While going back to work gives me some independence and also means that Tillery is doing really well medically, there is still fear. The biggest fear is an emergency arising and me not being able to get to her. It's been so amazing to be able to always be with her and I thank so many faithful supporters who have financially contributed to our family over the past few years so that I could always be with her.
But it's time to step out of the fear. She's been really healthy for about 10 months, she's been eating by mouth for about 8 months, and she's been walking for almost 5 months. She's no longer the sick little girl that kept us on pins and needles. She's now a sassy little chatterbox who is super independent.
As I go back to the classroom tomorrow, I do so as a very different person than I was 4 years ago. I believe my time with Tillery has made me a better person in many aspects of my life as she has made me much more empathetic. I'm excited to begin down this road again and see how our story continues to unfold.
On a related note, I've often spoken about my Ronald McDonald House friends. We lived under the same roof while we were all experiencing some of the hardest days of our lives. We were each other's support and family so that we never went through any of it alone. I want to give a shout out to my old housemates who are also out in the working world again, doing an amazing job of keeping on in this world, even after hardship.
So way to go Leslie, Mary Ann, Sandy, Cassie, and Julia! And an extra high five to RMH dad, Brandon, who left the RMH and went back to school to become a nurse! I thought we'd never see the "real world" again!
Monday, August 22, 2016
Tuesday, July 12, 2016
Circle Me, Lord
Circle me, Lord.
Keep protection near and danger afar.
Circle me, Lord
Keep hope within. Keep doubt without.
Circle me, Lord.
Keep light near and darkness afar.
Circle me, Lord.
Keep peace within. Keep evil out.
Prayer by David Adam.
For the past few weeks, our church services have started with the reading of this prayer. I have not yet been able to say all of the words before tears begin to well up in my eyes and my voice catches.
Three weeks ago, we came to Norwood United Methodist Church to attend for the first time the church that our family would be serving in ministry. My husband would begin preaching the following Sunday so our first Sunday we planned to just worship from the back pew and observe. This was the first impression I had and I knew that God was speaking to me during this opening prayer.
We moved three weeks prior to my daughter's surgery and packing and unpacking boxes was a nice way to take my mind off of the looming date. Whenever I let my mind wander, the fear is always there. The fear I experience isn't about the surgery itself. Instead, I'm taken back to the paralyzing fear from November 15, 2014, the fall that caused it all. The time I laid my daughter down and turned my back just long enough for our lives to be changed dramatically.
I hate to always talk about that day. I really hate to relive it daily. But the truth is, I see that moment in my mind almost every single day. I see her hit her head on the wood floor. I see her face, red and crying, as I picked her up. I see her eyes flutter as Joe and I shouted her name and shook her. I see Joe run out the door with her, heading for the hospital. It's with me, always.
Friday's surgery should resolve all issues that remain from the fall. From brain bleed and bone flap removal to bone replacement followed by the bone recessing, my child's skull has not been round and there has been a visible reminder to me daily of the accident that almost took her away.
Following the night of the fall, I struggled with my faith in a way that I never have since accepting Christ as my Savior. My child had been spared, but I felt so undeserving. I doubted myself and questioned my ability to keep her safe. I was living in fear and while I was so thankful to have her, for the first time, I began to feel like that would not always be the case. After being so positive for so long, I had hit the bottom and did not know how to come back up.
One night was especially awful. I wrote this blog about the nightmares I experienced nightly. After my writing and the prayers of so many faithful prayer warriors, things began to improve. I let go of the fear that was controlling me and began to trust God again to lead my path.
As we prepare for this surgery that will finally leave my daughter with a round head and remove the physical reminder of that dark time, I have felt some of the fear coming back. It's as though I'm being reminded that our time is not promised. Like my nightmares many months ago, Satan is creeping into my life and telling me to be fearful.
This week, when I feel the pull to fear I've been instead saying "Circle me, Lord". What a beautiful mantra to carry with me this week! I encourage you to read it again and join me in asking the Lord to circle us all. He is our protection, our hope, our light, and our peace. May we feel Him circle our lives.
Circle me, Lord.
Keep protection near and danger afar.
Circle me, Lord
Keep hope within. Keep doubt without.
Circle me, Lord.
Keep light near and darkness afar.
Circle me, Lord.
Keep peace within. Keep evil out.
Keep protection near and danger afar.
Circle me, Lord
Keep hope within. Keep doubt without.
Circle me, Lord.
Keep light near and darkness afar.
Circle me, Lord.
Keep peace within. Keep evil out.
Thursday, July 7, 2016
What Kind of World
In recent months, we've been fed a lot of fears. Here is a short list of things we have been told to fear: bathrooms, gorillas, nightclubs, Muslims, transgender people, guns, alligators, foreigners, police officers, radicals, conservatives, liberals, Mother Nature, and everyone running for president.
Over the past few months, so many friends have made social media posts that make mention of the "kind of world" they are living in or their children are growing up in. I understand the fears because so much we see is scary. There are so many people or things that would or could hurt us. I also know that we are not meant to live our lives in fear.
I know I am a white woman. I know I am a straight woman. I don't go to nightclubs or Disney, either. So in many ways, I'm on the outside. I don't know what it is like to be judged by my skin color or my spouse. I have a master's degree and while I'm not rich, I've never experienced true poverty. I can sympathize but never empathize on many accounts of struggles.
What I can offer is love. It may sound silly and like that's not enough. "Oh, love, like that's gonna save us!" Maybe it won't keep me from harm or you from harm. But, we are called to love our neighbors. It's the biggest Bible takeaway after "love the Lord your God." (Matthew 22:37)
I've been doing a Bible study on 1 John and there is a verse I read recently that sums it up. There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 1 John 4:18
No fear in love. If we focus on God's love towards us, what have we to fear? I don't want to die but if I did, I know I will be with Jesus and free from the worries of this world. And if we show love to others, we show them God and give them the power over fear.
I know this seems very simplified and doesn't sound like it will solve anything. But honestly, is your Facebook post of fear solving anything? Do you think rules, government, signage, language, or elections will solve it? We can't wait on some major shift to happen without making minor changes ourselves. How about starting with love?
Instead of asking "What kind of world are we living in?" we could exclaim "What kind world we are living in!"
Over the past few months, so many friends have made social media posts that make mention of the "kind of world" they are living in or their children are growing up in. I understand the fears because so much we see is scary. There are so many people or things that would or could hurt us. I also know that we are not meant to live our lives in fear.
I know I am a white woman. I know I am a straight woman. I don't go to nightclubs or Disney, either. So in many ways, I'm on the outside. I don't know what it is like to be judged by my skin color or my spouse. I have a master's degree and while I'm not rich, I've never experienced true poverty. I can sympathize but never empathize on many accounts of struggles.
What I can offer is love. It may sound silly and like that's not enough. "Oh, love, like that's gonna save us!" Maybe it won't keep me from harm or you from harm. But, we are called to love our neighbors. It's the biggest Bible takeaway after "love the Lord your God." (Matthew 22:37)
I've been doing a Bible study on 1 John and there is a verse I read recently that sums it up. There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 1 John 4:18
No fear in love. If we focus on God's love towards us, what have we to fear? I don't want to die but if I did, I know I will be with Jesus and free from the worries of this world. And if we show love to others, we show them God and give them the power over fear.
I know this seems very simplified and doesn't sound like it will solve anything. But honestly, is your Facebook post of fear solving anything? Do you think rules, government, signage, language, or elections will solve it? We can't wait on some major shift to happen without making minor changes ourselves. How about starting with love?
Instead of asking "What kind of world are we living in?" we could exclaim "What kind world we are living in!"
Tuesday, July 5, 2016
God Helps Us Handle What We Are Given
People often try to offer comforting and encouraging words to me as I care for my daughter with childhood cancer. One of the things that people say is "God only gives us what we can handle."
I want to discuss this phrase.
To start, let's look at the first part, "God gives us". This tells me that God has given me this situation. So when you say this to me, you are saying that God has placed that tumor in my child's head. God gave me a sick child. God is the reason that my child has cancer.
If I were not a believer in God, I'm not sure that would make me very interested in learning more about Him.
Then, let's look at the second part, "what we can handle". I assure you, I cannot handle this. This mass in my daughter's head wasn't placed there because God knew that I could handle it. I'm not any more equipped to handle it than you or anyone else.
Again, if I were not a believer, I would think that God obviously does not know me very well if He thinks this is something that I can handle.
Now, let's look at what the Scriptures say about troubles.
The Lord is a refuge for the oppressed,
a stronghold in times of trouble. Psalm 9:9
Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me. Psalm 138:7
In this world, you will have trouble. But take heart! I have overcome the world. John 16:33
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 2 Corinthians 1:3-4
These verses tell us that we will face troubles. Hard times will come. Not that He will send them, but that they are there. The verses also say that God is our stronghold, He saves us, He has overcome the world, and He will comfort us. It isn't about what we can handle but what He can handle alongside us.
Perhaps, instead of "God only gives us what we can handle." what should be said is, "God helps us handle what we are given."
I want to discuss this phrase.
To start, let's look at the first part, "God gives us". This tells me that God has given me this situation. So when you say this to me, you are saying that God has placed that tumor in my child's head. God gave me a sick child. God is the reason that my child has cancer.
If I were not a believer in God, I'm not sure that would make me very interested in learning more about Him.
Then, let's look at the second part, "what we can handle". I assure you, I cannot handle this. This mass in my daughter's head wasn't placed there because God knew that I could handle it. I'm not any more equipped to handle it than you or anyone else.
Again, if I were not a believer, I would think that God obviously does not know me very well if He thinks this is something that I can handle.
Now, let's look at what the Scriptures say about troubles.
The Lord is a refuge for the oppressed,
a stronghold in times of trouble. Psalm 9:9
Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me. Psalm 138:7
In this world, you will have trouble. But take heart! I have overcome the world. John 16:33
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 2 Corinthians 1:3-4
These verses tell us that we will face troubles. Hard times will come. Not that He will send them, but that they are there. The verses also say that God is our stronghold, He saves us, He has overcome the world, and He will comfort us. It isn't about what we can handle but what He can handle alongside us.
Perhaps, instead of "God only gives us what we can handle." what should be said is, "God helps us handle what we are given."
Tuesday, May 17, 2016
Hush Little Baby
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.
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.
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.
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