Author: Melissa

Nine Years

The anniversary of Lily’s choking accident, which led to her brain injury, is February 24, but I always dread the entire month of February anyway. The combination of the cold temperatures, gray skies, and lack of sunshine are already enough to do me in. Add to that the impending anniversary and sometimes it’s nearly impossible for me to want to leave my house. It’s just a crappy time in general, so if you see me eating a cupcake or just looking a bit sad, you’ll know why.

I always have so many emotions and thoughts swirling around at this time. I think about my sweet Lily and how full of life, love, joy, and spunk she was. She loved Taylor Swift. She wanted to play piano and take gymnastics lessons (she was quite a daredevil). She was kind and loving and adored her friends. She loved Jesus BIG. I think about how she’s turning 16 in a few months and how we should celebrate that. Should we have a big party? If so, who would even come to it? Should we just do something for us and not make it a big deal?

I think, if we had just made different choices, this would never have happened, and Lily would be doing all of those normal things. I think about the friendships we had that have gone by the wayside and the crushing loneliness we experience at times. Sometimes these thoughts are absolutely overwhelming. It is even difficult for me to write this, but this is what is beneath the surface for me. I struggle with anxiety so little things (in all areas of my life) can be magnified by a thousand. It does not consume me all the time as it used to, but it is always there, and bubbles up while I am doing the most mundane things.

Curt Seaburg, the lead pastor of our church (Victory Church), just preached a series called Choose Joy. I found myself nodding in agreement with so much of what he said during this series. Todd and I know what it is like to have to CHOOSE to have joy in your life. We had to choose to dwell in the most positive place we could as often as we could. We had to do that for Bryce, so he could have as normal of a life as possible (and he is now doing exceptionally well in college and is an incredible young man). We know that real joy in the face of overwhelming grief and exhaustion is only found through relying on Jesus and His peace and hope.

It is NOT always easy to choose joy, however. There are many times when we are tired, angry, and grieving. We do not stay there. We know we have to pull ourselves out of that and choose joy again. We do have so much to be grateful for. We are always reminded of the kindness and generosity that has been shown to us over the years, especially very early in this journey. We would not have made it through those long days and nights of uncertainty and fear without God’s provision of family, friends, and complete strangers helping us out in countless ways. So, if you are one of those people, we want to say “thank you” again for everything!

We still have things to look forward to this month. We took Lily to the Night to Shine and it was so much fun. Lily looked AMAZING. I am also serving on the worship team at Victory Church a lot and that just gives me LIFE. I know it is hard for some people to understand how it’s possible for me to do that, but as our pastor says, “There are two times to worship: when you feel like it and when you don’t.” Leading worship is just one way for me to CHOOSE JOY. God is still good in the middle of all of this. We still have so much to be grateful for every single day. God has shown His faithfulness over these last nine years in ways we can’t even explain. Even on the bad days, even when the healing we were hoping for hasn’t come, HE IS IN IT. He is there walking us through everything. THIS is how and why I worship. I would be lost without the hope and trust that only God can provide.

This is a song I just lead at church yesterday. I wasn’t even thinking of the date when I chose this song, but I think it’s a fitting song that illustrates this journey that we have been on for nine years:

Highlands (Song of Ascent) by Hillsong

O how high would I climb mountains

If the mountains were where you hide

O how far I’d scale the valleys

If you graced the other side

O how long have I chased rivers

From lowly seas to where they rise

Against the rush of grace descending

From the source of its supple

In the highlands and the heartache

You’re neither more or less inclined

I would search and stop at nothing

You’re just not that hard to find

So I will praise you on the mountain

And I will praise you when the mountain’s in my way

You’re the summit where my feet are

So I will praise you in the valleys all the same

No less God within the shadows

No less faithful when the night leads me astray

You’re the heaven where my heart is

In the highlands and the heartache all the same

O how far beneath your glory

Does your kindness extend the path

From where your feet rest on the sunrise

To where you sweep the sinner’s past

O how fast would you come running

If just to shadow my through the night

Trace my steps though all my failure

And walk me out the other side

For who could dare ascend that mountain

That valleyed hill called Calvary

But for the one I call call Good Shepherd

Who like a lamb was slain for me

Whatever I walk through

Wherever I am

Your name can move mountains 

Wherever I stand

If ever I walk through the valley of death

I’ll sing in the shadows

My song of ascent

From the gravest of all valleys

Come the pastures we call grace

A mighty river flowing upwards

From a deep but empty grave

Thank you again to everyone who has supported us and loved and cared for Lily over these past nine years. We love you.

It is hard to believe that Lily’s accident was eight years ago. I can’t believe we’ve been living our lives this way for that long. I wanted to write something new for this year, but I just don’t think I have the energy right now. So, I am reposting the majority of what I wrote last year, with a few updates.

Eight years ago, we were just going about our lives. We were just doing normal things everyone else does–watching TV, snuggling up under blankets, laughing, planning, going to work, the kids were loving school, and everything was just about as good as it could be. We had just gotten a new cat, Chloe, who was still adjusting to her new environment.

Who knew that our lives would soon explode like the Death Star and all of those things we took for granted would be gone.

I remember the night before Lily’s accident very clearly. She and I decided to have snuggle time together that evening and we just covered ourselves up with blankets. We whispered silly things to each other, giggled, and talked about things a six and a half year old would talk about. I remember we had an “I love you” contest: who could describe how much they loved the other person the most. We took turns–Lily said “I love you to the moon.” And I said “I love you to the moon and back.” Lily said, “I love you to the moon and back TWICE.” And it went on like that for a while, until we ran out of heavenly bodies to use. We finally decided on this:

“I love you with ALL the moons, and ALL the stars, and ALL the planets and ALL the suns, and ALL the comets and ALL the asteroids, in ALL the galaxies in ALL the universes.”

This is what I still say to her every night when I tuck her into bed. Every night.

I want people to know that she was the sweetest, funniest, kindest, most loving girl we could have asked for. She could imitate the voices and laughs of every Spongebob character. She was reading way over her grade level and devoured books. She liked to write letters to her friends. She was super creative and did sock puppet shows for us all the time. She loved to snuggle.

I miss her so much. I miss her spark, her joy, her kindness, her love, her potential, her dreams, her future.

She will never have friends. All of the friends she had at the time of the accident moved on and stopped visiting her a long time ago, and I completely understand that. It was probably very hard for them, and they were all so young when this happened. Time also moves on, and they made new friends, and are now all in high school. But it does hurt when I see girls her age out and about, doing things teenage girls do. I wonder what she’d enjoy doing now, what music she’d like, what activities she’d be involved in.

She will never be asked out by a boy. She will never get married. Todd will never walk her down the aisle. She will never have children. I will never get to be the mother of the bride, or the grandmother to her children.

It occurred to me recently that we’ve had Lily for more time post-accident than we did pre-accident. This makes me very sad because it makes me realize how much we’ve been ripped off of having a normal life with our beautiful girl.

This is what we grieve every single day.

Every day, we just try to let her know how much we love her, need her, and adore her.

We are grateful that she is still here with us and we can kiss her sweet face and look into her beautiful eyes. The last year has been pretty good overall for her health. We had a little scare in September when she had a long seizure which required us to take her to the ER. She had started on the Ketogenic diet in January 2018, but was taken off of it in January 2019 because it was not as effective as we had hoped it would be.

Each year at this time, I like to say thank you to those who have helped us and supported us since Lily’s accident. However, every day I think of a kind act, donation, or some other type of support we’ve received. You have all impacted our lives in some way or another and we are truly humbled and grateful for every single thing that has been done to support us.

I would like to also thank our dedicated nurses who are essential to us having somewhat of a normal life. We don’t know what we’d do without them. And my Mom, Dad, best friend Lisa, and other friends and supporters who just show up and help us out with things like laundry, dinner, and cleaning–thank you!! Those little things mean the world to us and are a huge blessing.

I can also see how far God has brought our family since this happened. This event completely devastated us and for a very long time, we didn’t know if we’d ever climb out of the pit of grief and despair. We still have many periods of time where any one of us are in the pit again at any given moment. However, we have been able to put the pieces back together very slowly (and it still ain’t pretty) and move on with things as they are. This has been very difficult to do, but I can only say that it’s been with God’s grace, mercy, strength, and redemption that we’ve been able to do that. HE is greater, HE is the REDEEMER, and I praise HIM for what he has done for us. I truly would not be able to even get out of bed in the morning without the strength of God, which is beyond my comprehension.

One thing we want everyone to know is that Lily is still a person with thoughts and feelings, even though she can’t verbally respond to people. When you see her, please say hello, talk to her, acknowledge her. It’s amazing how many people just don’t talk to her or even notice she’s there. I know it’s awkward sometimes, and people are afraid of saying the wrong things. But if you just talk to her like a regular person, it is fine!

So, please remember our Lily. She was a vibrant, kind, joyful, creative, sweet, loving, amazing girl before this happened. I don’t want anyone to forget that. Please pray for her on this hard anniversary and always. Thanks again for all of the love and support we have received and continue to receive from all of you.

Much love,
Melissa, Todd, Bryce and Lily

Today we had a keto checkup at Johns Hopkins with Dr Kossoff. We did not get the news we were hoping for. We have not seen the reduction in seizures we had expected since she began the keto diet in February. Lily is still experiencing several small to medium seizures per day. We were hoping that the diet would have reduced the seizures by now. So, Lily is being taken off the diet and will go back to the formula she had been on previously. We will possibly be trying other anti-seizure medicines in the near future.

I am still processing how disappointed I am that this diet did not help Lily more. I have been feeling a number of emotions since our appointment today–anger, sadness, grief, disappointment. Some kids get on this diet and never have a seizure again, and while we weren’t expecting that for Lily, the fact that it didn’t really help at all is discouraging. I feel like we are running out of alternatives to help Lily and I am just gutted over this.

I try to stay positive and hopeful as much as possible, but sometimes things like this just hit me hard and I need time to just sit with the sadness and have a good cry. Just this weekend at church, we sang, “I know breakthrough is coming/by faith, I see a miracle.” At this moment I am struggling with why this was not a breakthrough for Lily. All we want is for some seizure relief and some improvement so we can maybe have a piece of her back, but it does not seem to be in the plans. I just need to process this for a bit.

One really great part of today was we got to see friends we met while we were admitted for the keto changeover in January. Their precious, beautiful son was also transitioning to the keto diet at that time, so we got to spend time with them and share some of our experiences dealing with our children’s needs. They are a special family and I am so glad our paths crossed and that we got to see them again today.

Anyway, thank you for reading. I am sure I will be in a different place with all of this in a few days. Please keep praying for Lily and that whatever we try next for her would be effective.

Thank you for all the support and love for Lily and our family.

Wow! What a weekend for celebrations! Today is Lily’s 14th birthday, but the festivities started yesterday as we started the day watching the wedding of Prince Harry and Meghan! Such a lovely ceremony! I am a huge Anglophile, so this gave me the inspiration for Lily’s birthday party to be British themed. We had British plates and decor, and the ladies wore tiaras and fancy hats! It was a lot of fun! Then today, we attended the baptism of our niece, Briella, and our nephew, Lucas. I got a little teary eyed because God is so good! Then we attended the Quinceanara party for my cousin’s daughter, Gabby. That was a great party!

Sometimes, it is so hard for us to attend any of these types of functions because of logistics and most of the time one of us ends up going alone so the other one can stay home with Lily, and sometimes it is just hard to want to socialize and a lot of times the experiences are bittersweet. We try to get to as many things as we can because we know it’s important to be there for family and friends, and because you have to take every opportunity to celebrate. We know all too well how plans can change so we know that you have to live in the moment sometimes.

Speaking of events, I am going to put out one last plea for help with caring for Lily on June 17. We are looking for someone (or more than one person) to care for Lily on June 17. I had bought tickets to see U2 in Washington, DC, back in November, and had planned for us to stay there overnight after the concert. However, we will need care for Lily during the day on June 17 (I am not sure exactly how long). We will pay the caregiver for the time. If you or anyone you know may be interested in this, please let me know ASAP.

Thanks to everyone who has wished Lily a happy birthday! We are so grateful Lily is here and every birthday is a gift to US. She is so tough, strong, and resilient and we just want her to know how much we love her and need her, and that her life matters.

Much love to all!

 

 

 

Hey everyone! I wanted to give all of you an update on Lily and how she’s been doing on the Keto diet. So far, it has been working very well for her. We have noticed a reduction in seizures and that she’s a lot more alert and aware of things than she used to be! She had a follow up appointment with our Keto doctor, Dr. Kosoff, yesterday at Johns Hopkins. He was pleased with how she’s responding to the diet so he decided that we can start to eliminate (very slowly) one of her seizure meds!! WOOT! The protocol will be to drop the dose very slowly over the course of two months, with the goal of completely eliminating it. She will still remain on her other seizure medicine for the time being. We are hoping that by getting her off this medicine, we will see more alertness and awareness emerging! So, please be praying for that!!

With the keto formula, however, comes some tummy issues. We have had to find a new pediatric gastro doctor because the one we have been seeing here in Lancaster switched to a different hospital system and for some reason we can only see him in Delaware now because of our primary insurance. It makes no sense to me whatsoever, but this is an example of how the insurance system is just broken. So, we have been able to find a new pediatric gastro doctor in Hershey and Lily will be seeing that doctor in May.

In other news, we are getting ready for Bryce’s high school graduation and eventually starting college at University of the Arts in August! It is so hard to believe this is all happening!! But, we are so proud of him for how he’s been able to come through everything we’ve had to deal with over these past seven years and is ready to move on to the next natural chapter of his life. We are so happy for him because we know he is pursuing something he is passionate about (he will be majoring in Music Business and Technology, and eventually wants to be a sound engineer/producer) and he’s really looking forward to life in Philadelphia. I am happy that it’s only a train ride away! 🙂

Of course, we are always so grateful for the love and support we receive from all of you! We love you!

 

 

 

Seven years ago, we were just going about our lives. We were just doing normal things everyone else does–watching TV, snuggling up under blankets, laughing, planning, going to work, the kids were loving school, and everything was just about as good as it could be. We had just gotten a new cat, Chloe, who was still adjusting to her new environment.

Who knew that our lives would soon explode like the Death Star and all of those things we took for granted would be gone.

I remember the night before Lily’s accident very clearly. She and I decided to have snuggle time together that evening and we just covered ourselves up with blankets. We whispered silly things to each other, giggled, and talked about things a six and a half year old would talk about. I remember we had an “I love you” contest: who could describe how much they loved the other person the most. We took turns–Lily said “I love you to the moon.” And I said “I love you to the moon and back.” Lily “I love you to the moon and back TWICE.” And it went on like that for a while, until we ran out of heavenly bodies to use. We finally decided on this:

“I love you with ALL the moons, and ALL the stars, and ALL the planets and ALL the suns, and ALL the comets and ALL the asteroids, in ALL the galaxies in ALL the universes.”

This is what I still say to her every night when I tuck her into bed. Every night.

I miss her so much. I miss her spark, her joy, her kindness, her love, her potential, her dreams, her future.

She will never have friends. I see girls her age out and about, doing things teenage girls do. I wonder what she’d enjoy doing now, what music she’d like, what activities she’d be involved in.

She will never be asked out by a boy. She will never get married. Todd will never walk her down the aisle. She will never have children. I will never get to be the mother of the bride, or the grandmother to her children.

It occurred to me recently that we’ve had Lily for more time post-accident than we did pre-accident. This makes me very sad because it makes me realize how much we’ve been ripped off of having a normal life with our beautiful girl.

This is what we grieve every single day.

Every day, we just try to let her know how much we love her, need her, and adore her.

We are grateful that she is still here with us and we can kiss her sweet face and look into her beautiful eyes. The last year has been really good for us and for Lily’s health. She started using a CPAP machine a few months ago and this has made a huge difference in her breathing and pulse ox, not only at night while she’s sleeping, but also during the day when she’s at school or going about other activities. She also started on the Ketogenic diet in January. So far, it’s been going very well and we’ve noticed a slight decrease in seizure frequency and an increase in alertness. These are all wonderful things and we hope to continue to see these improvements continue! We also were able to move into our new home and it is just so perfect for us! We all love the house so much and I am thankful every day that we were able to move here.

Each year at this time, I like to say thank you to those who have helped us and supported us since Lily’s accident. However, every day I think of a kind act, donation, or some other type of support we’ve received. You have all impacted our lives in some way or another and we are truly humbled and grateful for every single thing that has been done to support us.

I can also see how far God has brought our family since this happened. This event completely devastated us and for a very long time, we didn’t know if we’d ever climb out of the pit of grief and despair. We still have many periods of time where any one of us are in the pit again at any given moment. However, we have been able to put the pieces back together very slowly (and it still ain’t pretty) and move on with things as they are. This has been very difficult to do, but I can only say that it’s been with God’s grace, mercy, strength, and redemption that we’ve been able to do that. HE is greater, HE is the REDEEMER, and I praise HIM for what he has done for us. I truly would not be able to even get out of bed in the morning without the strength of God, which is beyond my comprehension.

One thing we want everyone to know is that Lily is still a person with thoughts and feelings, even though she can’t verbally respond to people. When you see her, please say hello, talk to her, acknowledge her. It’s amazing how many people just don’t talk to her or even notice she’s there. I know it’s awkward sometimes, and people are afraid of saying the wrong things. But if you just talk to her like a regular person, it is fine!

So, please remember our Lily. She was a vibrant, kind, joyful, creative, sweet, loving, amazing girl before this happened. I don’t want anyone to forget that. Please pray for her on this hard anniversary and always. Thanks again for all of the love and support we have received and continue to receive from all of you.

Much love,
Melissa, Todd, Bryce and Lily

Just a quick post to say we’re in need of some help with Lily on the following dates:

Sunday, October 15 from 7:00am-noon

Thursday, October 19 from 5:30 pm-10:30 pm

 

Please message me if you can help or know someone who might be interested.

 

Thank you!

 

Hello Love for Lily fans! I know it’s been ages since our last post. We’ve had a lot going on for the past few months, and I thought it was time for an update on life with Lily.

We recently moved into a beautiful new home in Lancaster and we really love it here. It’s an updated rancher, so all the main living spaces are on one floor. Lily now has her own room and bathroom, so she has privacy but we are close enough in the living room that we can hear what’s going on in her room. I’m busy trying to make it into a functional space but one that a teenager would like also. 🙂 We’ve also had three contractors come out and look at the bathroom so we can do a tub modification. Right now, there is a regular tub and shower in Lily’s bathroom. We want to have it converted into a roll-in shower so we can bathe her in there instead of her always getting a bath in bed. We will be able to do this through a grant through Lancaster County BH/DS. Hopefully, it won’t take too long for the funds to come through so the work can begin (but you know how things always go with the PA state budget).

One of the main reasons we moved is so Lily could have her own bedroom and bathroom and this house was just perfect. We had been looking for several weeks after our other house had a contract on it, and we just could not find anything that met our needs. Finally, this house came on the market during the very last extension our buyers had given us. I knew it was the right house for us as soon as I saw the pictures. We couldn’t wait to go look at it. Once we did, we were very anxious to put in an offer. Our realtor advised us to write a letter to the sellers to tell them about our situation and how perfect this house would be for us. It must have worked, because they had two other offers on the house also but chose ours. 🙂 We were so happy! The house also has two other bedrooms on the main floor, and Bryce’s room is upstairs in the finished part of the attic area, so he has his own space. It also has a finished basement and a large unfinished area. This house had exactly everything we wanted. I still say that God does not overlook any small detail because He led us to a house that is perfect for us in every way. I also feel a sense of peace here and I can’t really explain it. Whatever it is, we are very happy here!

July was a pretty crazy month for us. I went to Chicago for work for a week, then we moved, then I went to Chicago again the very next week. At the same time, Bryce had his wisdom teeth out, and Lily had several appointments. First, she had a follow up appointment with gastroenterology to see how things were going with her feedings, reflux, and other gastro related issues. 😉 Things seemed to be fine so nothing new to report from that appointment. Next, she had an appointment with a pediatric ENT specialist at Johns Hopkins. We wanted her to go there because they provide excellent care, and we needed another opinion on her coughing issue. Our current pulmonologist had basically told us that he thought Lily would need a trache, which we absolutely do not want to do. A trache would require 100% 24/7 care for Lily. Todd and I thought this was an extreme step to take, so this is why we sought another opinion at Hopkins. This ENT recommended a CPAP machine to help Lily with breathing overnight. This is a much less extreme measure, but it required going back to the pulmonologist here in Lancaster for him to order the machine. This also requires another sleep study (which will be happening in September) so they can test the machine’s levels and see how Lily does with it. We hope it will help her breathe easier overnight and give her a chance to sleep more soundly.

Also, HOW is it possible that Bryce is getting ready to start his SENIOR year of high school! How did this happen?? I am in denial that we have reached this stage of life. 😉

So, I think that’s it from here for now. I just want to take this time to once again thank EVERYONE who helped us pack, clean, and move. We really could not have done it without each and every one of you! We are so grateful for all of you! And, as always, thank you for your continued prayer and support of Lily and our whole family.

Much love from Todd, Melissa, Bryce and Lily

 

 

 

Dear Love for Lily Fam,

I know new posts have been few and far between recently. Believe me when I say that we’ve been incredibly busy and when we are not busy, all we want to do is shut our brains off and have a bit of downtime. So, sorry for the lack of updates.

As you know, the 6th anniversary of Lily’s accident is February 24. My family and I really dread this time of year, with the cold, damp, gray days and although it is the shortest month, it seems like it will never end. Thank goodness for the warmer than usual weather over these past few days. This year, it has come hurtling toward me even though I’ve been swamped at work and at home. I still have times where I think if we had made different choices back then, maybe Lily’s accident wouldn’t have happened. We do blame ourselves for it and that will never change. However, life goes on and we have to pick up the pieces and keep moving, as inconceivable as that may seem sometimes.

I was going to share a very different post from this one, but I am choosing not to dwell in anger, bitterness, and grief, even though those are emotions I feel welling up at any given moment. But, I do want to share a quote from the mother of a young boy who has a brain injury also:
“In some instances time does not heal. Instead life continues on, acting merely as a distraction. The grief remains, as raw and sorrowful as it once was. Sometimes it bubbles up and hits when you least expect it but it’s also there when you do, like today.”

I am going to choose, in this post, to be grateful and thank everyone who has supported us along the way.
Thank you to our friends and family who were there with us during those darkest hours and days when we didn’t know what was going to happen. You spent many sleepless nights with us in the hospital and sacrificed time at your own jobs and with your own families to support us.

Thank you to those who came and prayed over Lily, brought food, gifts, and monetary donations. Many of you were strangers and yet you took the time and thought to support our family.

Thank you to those who have cleaned our house, made us meals, visited us, helped with home improvement projects and continued to donate to us over these past 6 years.

Thank you to those who still remember Lily and my family in your prayers.

Thank you to all of the nurses we have had over these past six years. You’ve seen the good, the bad, and the ugly of the realities of our daily lives. You know we are not perfect parents or people. We could not live the rest of our lives–going to work, sleeping, running errands, or just doing some fun things (sometimes)–without your presence. And I want to give special recognition to Robin, our main dayshift nurse, who really loves Lily, cares for her well, advocates for her, and knows her inside and out. She is a treasure and we are truly grateful for everything she does.

Thank you to those who are currently helping us with the home projects we need to complete in order to sell our home (and hopefully find a home that’s more suitable for our needs). We are so grateful for the many hours you’ve sacrificed to paint, install flooring, and fix broken things. We literally could not have done these things without all of you. Thank you. We’re praying and trusting that God has the perfect house for us at the exact time we will be ready for it.

I would personally like to thank my husband for being an amazing Dad to Lily and Bryce through all of this. I wish you could all see how much time and energy he puts into taking care of Lily. He is her Daddy and I know his heart is broken, too. I would also like to say that Bryce is an amazing, resilient young man who still struggles with all of this, too. We are so proud of him for all he has had to endure and overcome that most teenagers do not have to deal with every day.

I also thank God for all he has done and provided for us. I could not get up and live this life without His peace and strength which truly is beyond my understanding. I will continue to stand on that and trust Him, for I know he is constant and faithful to us.

Thank you again for continuing to support our family. We love you and are grateful beyond words. Please do not forget our Lily. She is our precious angel and her life matters. We strive every day to let her know how loved, needed, and precious she is. Every second we have with her is a gift. We know she is in there and can understand everything we say and do. I was at a meeting with her teacher recently, and she said she definitely notices Lily responding to things in her own way, and you can see it, too, if you pay attention. That meant the world to me and in fact, I am welling up as I type this because her teacher GETS IT and notices that Lily is trying to tell us things!

Thanks for reading and following our family. God bless all of you.