13 Today

I’m not sure why 13 seems like such a big number to me. For most it means entering teenage years. And those seem to be significant times in our lives. For us, that number hits a little different today. Hadassah Marie would be 13. Or maybe I should say she is 13 today. And our minds have to wonder…what all would she have achieved had she not passed away. The amount she was able to accomplish in 5 years was staggering. She’d learned to breathe, eat, and move on her own…feats doctors didn’t give her much probability to do. She was learning to communicate. By this time it’s hard to even imagine what our curly-haired girl would have done. I’m sure more challenges would have came her way. And I’m certain we would have watched her tackle each one. I’m guessing she would’ve learned to be quite determined to tell us how she felt about things. 

Yet even though she’s not here, she still is. Yesterday we released butterflies again, a simple way to remember her. Her legacy lives on through the Haddie Fund and through her sisters. Yesterday we watched a dozen kids playing on the playground that bears her name. And it’s unfathomable what all that girl has experienced with the Lord. Since he knows the days we are born, and he’s also the same God who commanded his people to celebrate festivals and special occasions, it stands to reason she may be having a party in heaven today. She has a couple more roommates that just got there in the past few months. And so today, on Mother’s Day, we celebrate too. 13 is just a number. But it’s more than just a number. And we are proud of our little girl. Happy Birthday Haddie. We love you. God is good. 

10 Years Old

 It’s interesting to me how we attach significance to a certain number of years. 1 year. 5 years. 10 years. 9 years is only one less than 10 yet 10 seems to be so much more than 9. It’s a decade. It’s a chapter in our lives. 

Maybe that’s why today seems to be a little bit heavier and more significant than yesterday. 10 years ago, on this day, Hadassah Marie Williams was born. That wasn’t supposed to be her birthday, at least, not in our minds. But God decided it was the right time. We woke up and ate our breakfast trying to have a normal morning and by the time dinner rolled around we had a 2lb 7oz baby girl fighting for life in the NICU. We had no idea that May 10th would be a day we would mark on the calendar for the rest of our lives. 

Those next 4 months moved slower than any months I’ve ever experienced in my life. The following year felt like a CD that keeps skipping (you 90s kids will understand that reference). One shunt malfunction after the next…fighting for normalcy. The next couple years were sweet yet challenging. Seeing Haddie sample various seizure meds, constant therapies in and out of the home, and us wondering what she knew. Yet a bit more normal. And then she turned 4. And it’s like the light switch turned on. We realized she was there. She was learning and growing. And she proved it to us. We began to dream and wonder what she could do in the next 5 years. And we still wonder that. She was learning to speak, she was learning to move, she was learning to live. 

She was. 

Much in the way she came is the way that she left…unexpectedly. And time rolls on. 

1 year turned into 5. And today our Haddie is 10. 

And while we are a little sad that she won’t be at her party in person tonight, we will still celebrate. Family, friends, food, fun. Things she would enjoy. 

And I imagine in my mind that a second party may be going on in the place where time doesn’t seem to matter all that much. When you’re in the presence of the One who created the world, time probably flies by like it does on the days we enjoy the most here. While I can’t fathom what Haddie would have done in her next 5 years on earth, my mind can”t begin to comprehend what she’s been able to do in her 5 years in heaven. 

Happy Birthday to our 10 year old. Haddie we love and miss you. We will try to have a good day knowing that you’re enjoying another best day ever. 

Nine- The Shooting Star

The other day I was scrolling through the channels and came across one of my favorite 90's movies entitled "Jack" starring Robin Williams. It's a fictional story about a boy born with a genetic disease that rapidly ages his body. Robin Williams plays a 10 year old boy who's struggling to realize that his life is quickly passing him by. By the time he's 18 his body will be that of an 80 year old. His tutor and friend Mr. Woodruff asks Jack if he's ever seen a shooting star...

Jack: No...

Mr Woodruff: It's wonderful. It passes quickly, but while it's here it just lights up the whole sky - it's the most beautiful thing you'd ever want to see. So beautiful that the other stars stop and watch. You almost never see one.

Jack: Why?

Mr Woodruff: Because they're very rare - quite rare - but I saw one. I did.

Jack: I just want to be a regular star.

Mr Woodruff: Jack, you'll never be regular. You're spectacular.

On May 10th, 2013, a shooting star was seen. She wasn't supposed to survive or make it past her first few moments on Earth...yet she did. She not only survived, she shined. For 5 years she lit up our world. So often her mother and I had wished she could just be a normal star, but that just wasn't what Haddie was meant to be. Shooting stars take your breath away. They change how you look at the sky. There is a tremendous sadness after they have passed because you enjoyed so much watching them streak across the sky. Yet you were glad that you got to witness one. For that brief moment, that light was all you could see. 

Today we celebrate the 9th birthday of our sweet Hadassah Marie. There is a major difference though between Haddie and a shooting star. Once a shooting star goes by, you'll never see that same light again from that star. I am confident that we will see Haddie again. She's in a place where stars don't burn out. We look forward to that day. Until then, we smile and remember her life and the light she brought to our lives. Happy Birthday Haddie, we love you. 

8

Well I was about to make a post. But my wife said it way better than I ever could over on Facebook so I’m just going to drop her thoughts below: 

Sometimes I forget that being Haddie’s mommy was a lot of hard work. Time makes you forget the hard hospital stays, the heaviness of a body that can’t support its weight, the difficulty of not knowing how your baby girl feels- good or bad. 

Time, however, will never make me forget the joy that Haddie brought. The challenge of making the world accessible to her. The fun of trying to “annoy” her with things like butterflies on her nose.  And the miracle that everyday of her life was- even the hard ones.

Happy 8th Birthday Haddie Bug, my sweet, sweet girl. I love you forever and ever and always. Hope Pap and Jesus made the cake sweet, the party beautiful and the day perfect for you. I’m sure it was🦋❤️🥳 

2 Years Later

 A lot can happen in two years. More than you realize anyways. And the old cliche “time flies” really does seem true at times. It seems like yesterday when I created this blog...and that was over 7 years ago. There are some days and weeks and months and even years that seem to take forever (2020, I’m looking at you) but if we look back on the grand scheme of things, life goes by fast. “What is your life, you are just a vapor that appears for a little while then vanishes away” James4:14 

Two years ago today a sweet and beautiful vapor vanished away from us. We knew it could happen, we just didn’t know it would be that soon. We still sometimes feel the rawness of those moments and we sometimes get stuck in those final moments we had on earth with Haddie. But 2 years has also taught us something that I didn’t think I’d ever be able to say. We are at peace with it. And it doesn’t hurt the same way that it did. Does it still hurt, absolutely. We will never stop thinking about that curly haired girl. But we knew then and we know now where Hadassah is. And so we choose to celebrate this day rather than just mourn it. It’s the day my daughter learned how to not only walk, but fly. It’s the day she not only got to speak, but to sing. It’s the day she got to be held in the arms of Jesus. And I can only smile thinking about that. She’s good. And so are we. 

We continue to try and remember her and use her legacy to make an impact through the Haddie Fund. We have had so many generous donations and we continue to try and spread awareness about the fund. 

Our 4 year old Ansley and 2 year old Selah keep us busy and we often talk about Haddie, where she is, and what she’s doing. Despite Haddie being gone, she is still very much a part of our lives and our daily conversation. 

Two years. The thought just occurred to me. We are two years closer to seeing our Haddie and our awesome savior Jesus. That’s a good thought. 

God is good.  

365,000 Years In Heaven

“But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day.” 1 day to God = 1000 years. I’m no CPA but if my math is correct then 365 days is like 365,000 years to God. 

That’s how long our Haddie has been enjoying heaven and all it has to offer. If she is with Him, and we know she is, it stands to reason she has no concept of time like we do. Every day is paradise. Who knows what she is experiencing each moment?! Pure joy.

As for us, well we are still stuck in this time thing...where a day is a day. And a week is a week and a year is a year. And for some weird reason we keep track of those days, months, and years and events that happen on them.

Tomorrow morning could be a sad day. We could experience all those emotions we felt that day. We might remember how crazy those moments were as we were doing all we could to hang on.  But I think we will do okay. The reality is we’ve either by accident or on purpose relived that moment several times over and over the past year. Kate had the idea of doing some of the fun things Haddie enjoyed doing. So tonight we ate some Olive Garden (she loved spaghetti), we went to the mall and painted (she loved hands on activities), we ate some ice cream (ok admittedly she liked cake way better), we randomly bumped into Haddie’s kindergarten teacher and our good friends who stood by our side that day, Lauren and Jim Keeling (it wasn’t random, God allowed our paths to cross tonight)...and finally...we swam for a couple hours at the Hampton Inn pool where Kate booked a room for us tonight. 

Tomorrow is another day. Will we miss Haddie, no doubt. We miss her every day. We might cry. Humans do that on anniversaries and whatnot. But I think we will also smile. We will smile because death doesn’t win in the end. God does. And those who put their faith in Jesus get to experience looking death square in the eye and saying, “nice try. Better luck next...o wait there is no next time. See ya”. We smile because September 25th, 2018 was Haddie’s first day in heaven. And 365 days later she’s probably not even scratched the surface of all of the wonder it contains and holds. And one day, she will get to show us the place and what’s she’s been up to. Maybe it’ll be in a day, maybe a week, maybe a year or 50 years. One day my time will be up. So will yours.  But mark this down, we will see our Haddie again.. And my dad. And many others. And most importantly we will see the One who made it all possible.  I hope you all will be there too.*  What a day that will be. 

In closing, thank you for your prayers and love you’ve shown us over this past year. We’ve felt your prayers carry us through some challenging times and we love you and thank you. God is good. 


*(If you aren’t 100% sure please send me a message anytime and we can talk. Seriously). 

Six

It's 9:52 AM here on this part of the earth. It's eternity o' clock in heaven where my sweet Haddie is. I can't imagine what it's like but I try to. I think already by this time today Haddie has spent sometime singing to Jesus, swimming in the clearest sea you could ever imagine, and has already ate some of the best cake you could ever taste...6 layers high, covered with sprinkles, and ice cream...and I'm sure pap helped her eat some of it....and some other relatives and friends (It's okay, cake doesnt make you fat in heaven) She's laughed, smiled that big smile, and has the biggest sense of peace you could ever fathom. 

Here on earth it's a little different. We smile. Yet we still cry. We smile because we didn't deserve the 5 years we got with her. It so easily could have been 5 minutes. But God decided to give us longer than that. And what a 5 years it was. That little girl taught us more in those 5 years than I imagine I'll learn the rest of my life. She taught us that God can do whatever He wants through whomever He wants no matter how small they are and no matter what odds are stacked against them. She taught us that what can look like a weakness is actually a strength. She taught us that words do not have to be spoken to communicate and understand love. She taught us more medical terms than we ever cared to know. She taught us to have hope. We got to spend 1,964 days with that girl. I remember the first time I said her name and that little arm shot up to hold my finger. I remember Kate getting to meet her. I remember being absolutely terrified as we made the trip from Philly to Belpre. I remember her milestones of crawling, smiling, eating, and talking. I vividly remember the last day we had too. 

And that's where the crying comes in. We are obviously glad that we know she is at peace now. Her body has no limitations. But we miss that crazy curly hair. We miss the sounds she made. We miss the look in her eye when she was happy and full of joy. She's there and we are still here. 227 days we have spent without her. No I don't know that number by heart...I googled it. But I imagine to Haddie, she's not aware of that span of time. She doesnt have to worry about time. I think she'll be seeing us any minute now (in her mind and the way she experiences it). Because there is no sadness in heaven, I don't think she has to feel the ache of missing us like we miss her. One day, either when Jesus comes back, or when we leave this earth, we will get to spend eternity with her. That will far outweigh any of the days we spent without her here on earth. 

Until then, we smile, cry, and remember the gift we were given. She was a beautiful fighter. Our myrtle tree. Frogger. Our sweet and precious Haddie. Happy 6th Birthday...I know it'll be a great one where you are. 

Good Grief-Tips to Help You Help Others

(This is a little lengthy but I hope you can take some time to read it when you get the chance)

First off, thank you. Thanks to all of you who have continued to ask and care for us. Last Friday made 4 months. And we appreciate you all remembering us and Haddie.

Having lost my dad in March and my daughter in September, I've had some time to really experience grief like I never had before. I'm not sure I believe in the stages of grief. I'd call them cycles. There are good days and bad days, good moments and bad moments. Until this year I dont think I could grasp what it would be like to be on this side of things. You always wonder "how in the world do they get through it". Or "what would I do in that situation" You also wonder how you can help. I want to tell you what has helped us. This may not be the same for every person. But prior to March and then September, I had no clue what to say or do when someone experienced a huge loss. Here's just a few of my observations.

1. It's not about what you say...well sort of. Standing in visitation lines at a funeral isn't a fun experience. You wonder what should I say or is there something I shouldn't say. I honestly couldnt tell you what 95% of what people said to me while I was at the receiving end of that line. "I'm sorry for your loss", "Im praying for you", "love you"...etc.  What I do remember is people being there. Hugs, tears, laughter. It's a reminder to me that we arent the only ones grieving. You just being there was enough.

What we enjoyed the most was people sharing memories with us. At my dad's funeral folks told stories about him that I had never heard before. Those stories add to my memories of him. Even if it was a story I'd heard before, I loved hearing it again. At Haddie's we found out just how she impacted so many people. Hearing those stories helped us tremendously.

As time has gone on what we've noticed is people are sometimes afraid to bring up Haddie or my dad. I think they are afraid it will upset us. The reality is...there's not a day that goes by that we don't think about them. So you bringing them up doesn't upset us. What's harder is feeling like they arent here anymore. At Christmas I knew Kate was worried that we'd go through the many gatherings and not talk about Haddie. So as a gift for her (and to myself) I asked 1 person at each gathering to pass out some sheets to everyone there saying "Haddie is Here Because I Remember..." and they'd write down their memories. We loved reading what people wrote down. It meant so much to us. We know you havent forgotten. But hearing you say or write down those memories makes us feel that. The last thing a person wants is to feel like people have forgotten or moved on. There's no moving on for us. Yes, the raw grief and extreme mourning has lightened up (some days)...but as long as I live I'm going to deal with this. So don't be afraid to talk about the person that passed. It actually helps.

The sort of...

I'd recommend not saying "I know how you feel" or "Ive been there". I know you are trying to make the person feel like they arent alone. But in reality, you don't know how they feel. Yes, you may have lost a father or a daughter or a similar relationship. You may know what tremendous loss feels like. But that doesnt mean you know exactly how that person feels. Grief is different for every person. There are so many circumstances that affect how you feel. Instead of saying "I know how you feel"...just tell them what helped you when you experienced a loss. Kate and I were unaware of how many folks we knew that had lost children. Them sharing how they dealt with it was good for us.

There's another phrase that is tricky. "If there's anything you need, anything at all, dont be afraid to ask or call". Hear me, I've said that one. If you said that to us...I appreciate it. I know you want to help. But here's the reality...when you are going through the raw stages of grief...you don't know what you need. And even if I did know what I needed...I'm probably too prideful to ask. So that brings me to my next suggestion:

2. It's about what you do.  So many folks helped us in so many ways. They didnt ask us what we needed...they just did it. Here's the list:

- The day Haddie died some close friends came and cleaned our house because they knew relatives would be coming in
- Other friends just came and sat with us so we wouldn't be alone. (Note...sometimes it's good to ask how long you should stay. Sometimes we wanted to be alone)
- Some folks actually paid to have a cleaning lady come in the following weeks and do a deep clean of our house. (They asked first. I know some people may be too prideful to accept but we were ecstatic)
- Food. SOOOO much food! People brought us a variety of dishes to help us feed the relatives.
- Entertainment- Some close friends bought us some tickets to go see an Ohio State game a few weeks after. That was a much needed day out for Kate and I.
- Some folks offered to pay for some grief counseling sessions. Kate and I both did that and it was very helpful I believe.
- Cards. (I especially like cards where you shared a memory or a story. I don't usually read what the author from Hallmark wrote because I don't know him or her)
- Babysitting
- Financial help
- Texts or calls in the weeks or months after letting us know of something that reminded you of them

And the list goes on. There's so many unique ways we can help folks who've experienced loss if we are willing to look and see. Just know this...there's nothing you can do to remove that grief or help them get over it. But those moments where people have helped does give us joy and hope for the future.

3. Faith is everything

Bottom line...God is really the only one that can bring peace. He has used you all to help. That is certain. Your prayers have helped. I know He hears you when you pray on our behalf. Knowing that my dad and Haddie are in heaven and that this is not the end...that I will see them again one day...that is indescribable. I am excited for that day. And I want others to feel this way that do not have hope.

My plea to you if you are a Christian is this...share your faith. Bless folks so much that they ask you about your faith. Share it. Tell your story. Quit worrying about politics and quit squabbling like children on Facebook. It's not the main thing. Letting people know that there's a Jesus and a solution to their pain is what matters. I ache so bad for the lost people in this world who do not know Jesus and go through something like this. More so I ache because death isn't the worst part for them...what's after death will be the worst part of they do not know and follow Jesus. I have soooooo much to look forward to when I die. So if you are a Christian, don't be afraid to share the only thing that will get people to heaven, help them with grief, and give them a purpose in life.

And if you aren't a Christian or you arent sure if you are...let's grab some lunch or dinner and talk.

God is good.

The Legacy

Legacy. That's a big word with an even bigger meaning. When we leave this earth, we leave behind the memories of us. But bigger than memories is the legacy. The impact. I think all people want to be remembered. But beyond just the memories we hope to have made a difference, a change, an influence on this world.

Haddie has done just that. We know that people will not forget her. Partly because of how awesome she was...and partly because we have no intentions of letting that legacy go. God gave us a miracle in Haddie and it wasnt just at her birth...it was her life. She blessed us in so many ways...and so we in turn hope to continue that blessing. You all have helped with that.

The Haddie fund has reached $5000. Thank you to all who contributed! That fund will be combined with another fund at our church and will be used to bless people in the future. Exactly how, we aren't sure yet. Kate and I have been placed on a committee with some other folks at church and we will meet soon to discuss all of that. I will keep you updated as time goes on.

Last week we went to Lifeline of Ohio in Columbus for an event. When Haddie passed they asked if we'd be willing to let her be an organ donor. We felt that would be a good thing to do. They were able to use her eyes, a heart valve, and her ribs to help other kids in need. Because of that, Lifeline of Ohio has honored Haddie by putting a rose in her name on the Lifeline float in the Rose Bowl Parade on New Year's Day. They will also put her name on a memorial outside of their Columbus headquarters. That means a lot to us.

Kate also had a great idea to bless Haddie's classmates. Haddie love kindergarten and they loved her. She made a huge impact at Belpre Elementary. Kate came across a wonderful children's book called "God Gave Us Heaven" by  Lisa Tawn Bergren. It's a wonderful book that explains what heaven is like to kids. And it's not just a fluffy kids version. It does an awesome job of explaining what we actually know about heaven and how we get there. I highly recommend it! Kate decided each kid in Haddie's class should get one. Her teacher, who goes to our church, was cool with that. We were able to take that a step further. She let us come in and read the book during story-time to the kids. Yesterday was amazing. Kate did a fantastic job reading to these children. They made us feel good by commenting on how they missed Haddie. We put her picture on the inside cover in her memory. The kids thanked us and gave us hugs. We walked away feeling full. We are grateful that God has given us this story. We're so glad God gave us heaven.

Live in such a way to leave a legacy. But not just a legacy that is all about you. Make it be a legacy that points people to the love of God. Haddie's whole life was an up arrow. When you looked at her life, you saw God's hand. You saw how he could take something small and make it big. You saw how he could speak through someone without words. You saw Him take someone who couldn't move on their own to move others. The question for us is this...are we doing the same? Are you an up arrow?

What will your legacy be?

How Are You?

"How are you?" Emphasis on "how". Eye brows raised. Look of concern. I can see people asking us that because we've been asked that question a lot. It's not a passing "how are ya". It's not a cliche greeting. It's a sympathy-filled, heart felt, gut wrenching question that people want to know the answer to. And we are glad that people care enough to ask. We know they care.

The answer, however, is complicated. We are a lot of things right now. It's a mixed bag. We are sad and happy at the same time. We are relieved in many ways and then feel guilty for feeling relieved. We are grateful and also in shock. Sometimes we are emotional and other times we are numb. I think anyone who's dealt with loss or grief can relate in some way.

Some folks expect us to be devastated I think. And in a sense you could say we are. But not fully. We actually have a good amount of peace about this. And that comes from a faith in God.

If you'll hang with me for a minute I want to unpack that. This is gonna be a little preachy but it has a point so hang in there. Many folks believe in God. But James is going to say "You believe that there is one God. Good! Even the demons believe that—and shudder." It's not enough just to recognize that there is a God. That's obvious. Demons believe that. What God is looking for is for people to draw near to Him and follow Him. To live for Him and trust Him..even when it all falls apart.

As I've said, Haddie was innocent. I do not believe she had sin on her as a child. Which is good because the Bible tells us that sin is what separates us from God. Maybe you knew that already. Or maybe you're one of the many folks that thinks everyone gets into heaven (except for Hitler, Bin Laden, and the other really bad people) That is simply NOT what God tells us. He says that all have sinned. Romans 6:23-For the wages of sin is death. . That's not just physical death but spiritual. If you die in that condition, you are separated from God for eternity. Being a nice and generous American doesn't pay the penalty. Just going to church occasionally doesn't pay the penalty. Death does. You have to pay the price.

Unless...someone pays it for you. And the only person that can do that is Jesus. God sends His own son who never sinned to pay for your sin. He showed us how to live. And then he showed us his love by dying for us. And here's the awesome part, he doesnt stay dead. He takes the keys of death from Satan and rises. And because of that, we can have a place called heaven. Because of that I know that Haddie is with our risen Savior. My dad is there too.

But the question I have is...how are you? Are you certain you are going there one day? If so, based on what? If it's based on anything other than your faith in Jesus, you might need to rethink that. The Bible spells out that if we believe in Jesus, reenact his death and resurrection through the symbolic act of baptism (Acts 2:38) then we are no longer condemned. We can know for sure where we are going. And Kate and I know for sure where we are going. Not because we deserve it (because we don't). Not because we are super parents (because we aren't), but because of our faith in Jesus.

THAT is how we have peace through this. It's not the end. We are in a win, win situation as my dad believed. 36,000 people read the blog last Tuesday. I want all 36,000 to be in heaven. I doubt that many read this post. Unless maybe you share it. But the question I say to you with all of the love and concern in my heart is this...how are you?

***If you'd ever like to talk about this stuff feel free to reach out to us. We don't have all of the answers. But we'd love to talk about the one answer we do have. God is good.

A Thank You Note

There’s no way to adequately describe the amount of love and support you’ve given to us over the past 6 days and the previous 5 years. When we asked for prayers, you did that. And so much more. Thank you for the calls, texts, cards, the fridge full of food, the house cleaning, the gifts, and all the other ways you showed support. We loved hearing the Haddie stories you had. We’d love to hear more if you have them.  We so appreciate you donating to the Haddie fund (which you can still do by sending a check to the Belpre Church of Christ marked Haddie in the memo)

We love our church family at Belpre and all the other churches that showed us love. That’s what the church is all about. It’s supposed to be a family.

We loved spending time with all of Haddie’s therapists, aids, teachers, and staff from Ewing preschool and Belpre Elementary along with the therapist at Marietta Memorial. We call you friends.

And most of all we thank God. We are grateful for the peace He’s given us during this time. We are so glad that Tuesday wasn’t the end. It was the beginning and one day we will see Haddie again. I’m so glad we serve a God who is good. He made a place called heaven. I’m grateful that through Jesus Kate and I can be there one day. But I’m also grateful that the rest of my life doesn’t have to be tragedy and sadness. Despite the pain of this and the challenges ahead, we have peace. That ONLY comes from Jesus. I pray for you today that you may know that peace. And if you don’t, we’d love to share why and how we have it. My next post will be about how to make sure you’ve got it.

Once again, thank you. God is good.

God is Good, Haddie is Home

I don’t have the words. For five years God has let us be the parents of a beautiful little girl named Hadassah Marie Williams. This morning she went to be with Jesus. Somehow she got herself turned over which she has never done before. Due to her limited mobility she couldn’t get back over. We thought we still had a chance. We did all we could as did the Belpre ER team. But today at 7:15, Haddie walked into the gates of heaven.  She is no longer silent but singing with the angels. She’s not an angel. That’s not how it works. She is beside Jesus and I have to believe she is beside my dad as well. For the first time she stood up and ran. She ran into his arms.

Those of you who choose not to believe...how? I have nothing else in this moment to hang on to. There is a God and He is good. While we work through the next through days months and years there will be tremendous pain. But we rejoice today and cry. We know exactly where she is.

We will let you know the arrangements when we find out. Thank you for praying for our little girl and loving our Haddie. God is good.

The Letter “H”

This all started with the letter H. Tonight it came full circle. If you recall we took Haddie out to Oklahoma to try out an Eye Gaze machine designed for ALS patients. We didn’t know much about eye gaze then. A good Christian man named Steve designed it through Oklahoma Christians Engeneering Department. He said he’d be interested in making a kids version down the road and asked us to fly out and try it out.

So we did. And I wasn’t so sure how well it would go when I saw that keyboard. Definitely not a kids version. But I asked Haddie, “can you spell your name, can you find the H”. It took a couple seconds but that little bubble on the screen moved over to the H...and I knew Haddie knew more than I thought she knew. She could spell. 

We came home and found out that the school actually had an Eye Gaze program called PRC. It was a different machine that was designed for kids. Music, games, activities. It certainly was something we were interested in. We love Steve and how he got us started but we know it will take some time to make that kids version. So we got Haddie a trial with PRC during school. Unfortunately Haddie was sick and in the hospital most of the trial. She showed some promise but just didn’t get to use it much. 

We got the trial extended this summer and got to keep the machine at home. She did well some days on it. She proved that she can use it and ask for certain things. She didn’t do that all the time. Probably because she’s 5. I don’t know a 5 year old that will do what you ask them to on command every time. However in order for us to get the machine we would need to have her therapist write the report that she could actually use it. Otherwise insurance won’t cover it and we’d have to foot the $15,000 bill. 

We believe the therapist can write the report. We need to make a trip to an eye center in Cincinnati to have them take a look. We can take a quick peak a couple other machines and make sure the one she’s using is best. 

All that to tel you this. Tomorrow they have to take back the eye gaze machine. Trials over. Haddie was about half asleep and not doing much on the machine tonight. She was tired from a swim party. I took it to the keyboard I created on it that just has plain letters. I leaned in and said “Haddie, I want you to find the H. There’s 26 letters up there. I want you to show me that you can do this again. Where”a the H?”. 5 seconds later............ “H”. She did it. Kate and I may have shed a tear or two. ..... “H”. She did it again. “Okay Haddie you smart aleck.”

I’m not sure why I’d doubt her. I know she can do it. But sometimes I think I’m dreaming. This non verbal girl is becoming verbal. It’s gonna take time and practice. But it will happen. Even if we have to get $15,000, it’s gonna happen. Every night we ask a God to let Haddie walk, talk, laugh, and smile. Gods allowed her to do those things... in reverse order. She’s smiled. Not long ago it looked like she was even laughing while driving her pink car. And now, she’ll learn to talk. God is amazing. 

She’s enjoying her new sister Selah and has a huge fan in Ansley. If you didn’t see the video of Ansley cheering her on last week you should check that out below. 

As always thanks for the prayers and thinking of Haddie. She continues to show me the power and love of God. H.

Ansley Cheering On Haddie's Eye Gaze

Oklahoma Eye Gaze Update

Hadassah has been doing well since her hip surgery. She was sore for about 3 weeks and is starting to comeback from that. She's hasn't moved her legs much at all yet so we are starting to work on that again. While at PT her therapist was moving her legs and a big smile came on Haddie's face. I think she misses moving and crawling so we are praying that comes back quickly.

The big news is we are headed to Oklahoma tomorrow with Haddie. Jeff Dimick from OVU told us about 2-3 months ago about someone he knew out at Oklahoma Christian University who had developed Eye Gaze technology for ALS patients. As you may know ALS is a terrible disease that will take a fully functional person and reduce them to the point where they cannot move at all...well almost. They can still control their eyes. So technology has been developed where a patient can look at a screen and then make a choice with their eyes. This isn't brand new technology that this guy (Steve Maher) has developed. But his desire is to make it much much more affordable. His unit costs around $3000. The next closest is around $10,000 we've been told. Here's the link to the video on it...it's worth a look!

https://youtu.be/CeJtSLkCD58

So our thought was "this works on people who've lost function, can it work on a kid who is learning how to function?"

We called him and told him about Haddie. He said that he was very interested in trying this out on kids and Haddie would be the first. We truly believe she can make choices using just her eyes. His programming would need some tweaking but he believes it is worth a shot. Yes, there is existing technology out there for kids already but once again the price is rather steep. So the plan is to go out and test the equipment on Friday. Then on Jan 16th Ewing has arranged to bring in some Eye Gaze technology that the school has and test it on her. This will give us a more well rounded idea of what might work best for Haddie.

We ask for your prayers. Mainly that we can get there without any issues. We are flying to save time and driving. We are a little nervous about Haddie's shunt and the pressure changes and also the whole carseat thing. We have a plan and think it will work but you never know how it'll all work until you do it.

Also pray that this can work for her. When we look into Haddie's eyes we see light. We see intelligence. There's a personality there. Yes, she's had a level 4 brain bleed on both sides of the brain. Yes she's had seizures. Yes she has delays. But that hasn't stopped her from doing things and developing. A delay by definition means that things will be slower...but it still can be done. It's an obstacle to move around. We believe that there is something there and that she can think. How frustrating it must be to think but not communicate. That's why we are headed to OKC.

Thanks for your thoughts and prayers.

Post Hip Surgery Update

Haddie went in Monday for double hip surgery and everything went well. They did not have to cast her. They couldnt even put a brace on her because her little hips are so tiny...they didnt have a brace small enough. So they just positioned her using pillows. She was very sleepy on Monday and Tuesday. Plenty of pain meds to keep her comfortable. They originally said we would get out Wednesday. Kate and I know that when they give a day for discharge you might as well add 2-3 days on it. And that's been the case. Haddie tends to scare nurses with some of her Haddie-isms. One of which is her raspy breathing after eating. So they gave her a little oxygen. They didnt like when she coughed on her oral meds so they put them in her IV. So all of that is stuff we have to come back off of. They have to be safe and they don't know Haddie so we arent mad or anything. Haddie just likes to make things complicated!

She ate great yesterday and they took the oxygen off and this morning she should be off her pain pump. So if all goes well we should be discharged today they said...so we are planning on next week being discharged! Just kidding. Hopefully today we'll take our princess home and get her on the road to recovery. We don't have to worry about a brace. We'll just have to use pillows and whatnot to keep her legs from coming too far apart while she heals.

She's a tough little fighter. The hardest part is figuring out how much pain she is in or was in. She can take an awful lot. Thanks for your prayer and your love for my family. God is good.

October Blog Update and Surgery News

Been a good while since I gave an update here on life with Haddie. It's amazing how fast life goes by. I remember our first post here and how that just seemed like yesterday. And here we are with a 4 year old Haddie and a walking and chattery 1 year old named Ansley. Life moves fast.

Haddie has been making a lot of progress recently. She has been doing a lot of what we call planking. She will lay on her stomach and we will hold down her legs and butt. We will give her a little support and she will lift her head and neck all on her own. This is huge progress for her. We are hoping this leads to more and more trunk control.

Haddie has also been given the privilege of getting a Go Baby Go Car. Her therapist at Marietta Memorial selected her to be one of three students to get this car. They basically let us pick a Toys R Us battery operated car and they fit it to Haddie. The cool part is that they will install buttons that Haddie can push so she can control the car. We choose a pink Jeep. This is Haddie getting fitted for it. It will be a good therapeutic tool for her moving forward (pun intended)

We also believe she is able to express what she wants using her eyes. We will ask her yes and no questions and tell her to look one way if the answer is yes. Most of the time she answers the way we think she would. We can also hold up two objects in front of her and ask her to choose which one she wants and she will do it. We have a connection to an engineering professor who has developed an eye gaze system that allows people with ALS to communicate with their eyes. Many of them cannot control anything but their eyes so he made a program that could allow them to communicate using just that. These are people who had full function and lost it. So we wondered if he could create something for a kid who is still developing and figuring out how to function. We have begun to talk to him about developing something for Haddie. We plan to make a trip at some point to meet this guy and let him meet Haddie. We are hopeful that this could be the start of something really good for Haddie's communication in the future.

The sad news is that we have a surgery on the horizon. Had has been taking Botox shots over the past few months and these have helped loosen her up. It took a couple tries to get the right dose but it has been working good. At our last appointment the doctor asked us to get hip xrays on Haddie because she seemed tighter in the hips. The xray revealed that her right hip is dislocated and her left hip is starting to dislocate. Kids with spastic muscles like Haddie have a hard time putting pressure on the legs which in turn keeps the hips up in the socket. The only option (besides doing nothing) is a surgery where they will cut the bone and push it further into the socket. They will do this on both sides. She will need to be in a brace for 3-6 weeks afterwards...that is if she has good bones. If they have any problems they will have to put her in a cast instead. We are praying for the brace.

We have no way of telling if Haddie will ever walk. But we do know that this will prevent her from having the chance. So we are going to put her through it in order for her to have that chance. She's a tough little girl.

Her little sister continues to grow and be a light in our lives. She's a little ball of joy. She seems to get along with Haddie pretty well. She knows not to pull Haddies hair and she tries to shake Haddie's hands to get her smile. We are blessed to have these two girls in our lives. We appreciate your continued prayers and thoughts. We head in for surgery November 6th, so we'd ask for your prayers again that day. God is good.

Looking Back

It's amazing what can happen in 4 years. It's also amazing how fast 4 years can fly by. In high school I felt like 4 years took forever...but it really didn't. College was a blur that went by so fast. And now when I look back 4 years I'm reminded of one of the scariest and craziest days of my life. It somehow seems like a distant dream and yet at the same time like it was just yesterday.

Today is Haddie's 4th "Butt Birthday". 4 years and 4 days ago we went to Children's Hospital of Philadelphia just to get evaluated. OSU told us we had better go just in case Fetal Surgery was needed. We never imagined that we would actually need it. They ran a full days worth of tests at CHOP and told us the tumor was stable but we'd have to stay in the area and not go home. Then just 4 days later, the test showed that the tumor had grown significantly and we had a super small window of time to undergo the fetal surgery or it would be too late.

That just seems so surreal. That's the stuff you see on TV. That doesn't happen to normal people like us. But it did. And we posted about it on this blog. And you all prayed like crazy. And Haddie lived.

It's been a great 4 years with Haddie. I don't update this as often as I used to because not as much is happening. It's just normal life now with 2 kids. Haddie's development is still very slow coming...but it is coming. When we look back a year or two ago at her alertness and level of cognition...man has she improved. She loves going to Ewing school. She learns so much there and they challenge her. She also still does therapies weekly over in Marietta.

Her recent EEG shows that she still has very irregular brain waves. But for her the waves looked good. No crazy seizures like in the past. Shes still on the meds that help control those. Now many of you have asked "how does she like her sister". Ansley really likes Haddie. We aren't sure how much that is reciprocated. Mainly because ansley is loud and a little "hands-on". She likes to grab Haddies face and her hair. And Haddie likes her personal space!

What excites us the most is seeing Haddies personality. She doesnt talk. She can't move much. Yet we are learning more and more how to read her. She says a lot with her eyes. We believe she can think and has opinions. So we try and give her choices and she has to use her eyes to choose. We do not think she's just "brain dead". Her brain is just different. And it's our job to unlock that and figure her out. And that is a challenge yet at the same time a blessing.

She is here. She is alive. She is growing and progressing. And that is a miracle that we won't ever take for granted. Thank you for remembering her 4 years ago and thank you for remembering her today. We know many of you still pray for us and we cannot thank you enough. God continues to use a little 25 lb girl to change lives and encourage people. God is good.

Two Kids & Two Blogs

I realized that I made a post about Ansley Ray being born on August 1st. However, I didn't post it to Facebook. So I have put that at the bottom of this post if you'd like to read it.

This past month has been a crazy one! Ansley was born on the 1st and came home on the 4th. Shortly thereafter we noticed that Haddie wasn't acting herself. She started to get better then got worse. She was very lethargic and she got very congested. So our doctor had her admitted to Camden Clark. She was in 2 days while they gave her some antibiotics. It was either a form of pneumonia or a virus. She recovered quickly which was good because the next Tuesday Haddie started preschool!

And she loves it. She goes to Ewing School Tuesday through Friday for a half day. She comes home bright eyed and happy. There are ten other students in her class. She really seems to be maturing quickly. It's hard to say how but there's a difference in her demeanor and the look in her eye.

People ask how Haddie likes Ansley. That is hard to say. She's not a big fan of the crying. For the first couple weeks we had to keep them separate since Haddie was sick. Ansley never caught any of what Haddie had thankfully.

It's been a bit of an adjustment getting used to having two kids. Ansley is obviously different than Haddie. She cries when she wants something. She keeps us up at night sometimes. She's a normal acting baby. Which is weird for us. But it is good. We are super blessed and learning how to live with two completely different kids. Kate's mom was here for the first 3 weeks and that was a major help. The hardest part since she has left has been that Kate is not allowed to lift Haddie right now due to her C Section. Once she gets cleared on that next week I think life will be a bit easier.

Need your prayers for tomorrow. We are taking Haddie to Akron to get her first round of Botox shots in her shoulders. The doctor thinks that she is very tight in her shoulders and by shooting botox directly into the shoulder muscle it will free up her arms to have more range of motion. Her therapy will be more productive if he's right. There are some risks involved that make us a bit nervous. He could hit the wrong spot and it may hurt Haddie's neck control. He seems to think it will be fine. The effects of the Botox only last 3 months anyways so if it works we can continue. If it doesn't we can stop. So we are hoping it helps her out. We'd appreciate your prayers on that. Below is the previous blog. Hope you all have a great week! God bless!




ANSLEY RAY BLOG-

 I realized that I left some of you hanging that follow the blog! Ansley Ray was born August 1 at 1:03pm, weighed 6lbs 11oz and was 19.5 inches long. As mentioned before I knew the the date but Kate did not. Once we hit July 28th I started messing with her. Some folks said if they were Kate they would have killed me. But this is what she wanted...to be surprised and for it to be like a natural birth which is unpredictable. I had to make every day in the range (July 28-August 8) seem like it could be the day. So July 28th I drove her by Camden Clark making her think that was the day...until we went to breakfast. I did the same thing the next day. On the 1st I told her we had our weekly doctor's appointment and so I drove by Camden Clark and went around back into the parking lot of building C where her doctor is. As we started walking to the building I handed her a water balloon and a penknife to pop it. She did and I asked her what happened. She said her water broke. (Some of you who saw the video actually thought her water broke...nope...just me being goofy) So off we went to Camden Clark.

Everything went fairly well up until they started the C-section. Due to the previous two surgeries Kate had several adhesions and scar tissue. So when they opened her up they accidentally clipped a small section in her intestine. They called in a general surgeon to help with that and a few moments later Ansley was born. They fixed the issue and we got to spend some time with Ansley.

Kate recovered rather well despite being pretty sore. We came home three days later and have been enjoying time with both of our girls the past two weeks. Kate's mom has been here to help us which has been awesome!

Haddie seems to like Ansley. She looks around kind of confused when she cries. Haddie's had a little cold so we've had to keep them a part for the past couple of days.

Ansley is a pretty easy baby so far. She only cries when she's hungry or needs a change and after you take care of that she's fine.

We are very blessed to have a calm and normal pregnancy. We think Ansley and Haddie will learn from each other and will help each other out in time. Thanks for your prayers. God is good.

Ansley Ray Update

I realized that I left some of you hanging that follow the blog! Ansley Ray was born August 1 at 1:03pm, weighed 6lbs 11oz and was 19.5 inches long. As mentioned before I knew the the date but Kate did not. Once we hit July 28th I started messing with her. Some folks said if they were Kate they would have killed me. But this is what she wanted...to be surprised and for it to be like a natural birth which is unpredictable. I had to make every day in the range (July 28-August 8) seem like it could be the day. So July 28th I drove her by Camden Clark making her think that was the day...until we went to breakfast. I did the same thing the next day. On the 1st I told her we had our weekly doctor's appointment and so I drove by Camden Clark and went around back into the parking lot of building C where her doctor is. As we started walking to the building I handed her a water balloon and a penknife to pop it. She did and I asked her what happened. She said her water broke. (Some of you who saw the video actually thought her water broke...nope...just me being goofy) So off we went to Camden Clark.

Everything went fairly well up until they started the C-section. Due to the previous two surgeries Kate had several adhesions and scar tissue. So when they opened her up they accidentally clipped a small section in her intestine. They called in a general surgeon to help with that and a few moments later Ansley was born. They fixed the issue and we got to spend some time with Ansley.

Kate recovered rather well despite being pretty sore. We came home three days later and have been enjoying time with both of our girls the past two weeks. Kate's mom has been here to help us which has been awesome!

Haddie seems to like Ansley. She looks around kind of confused when she cries. Haddie's had a little cold so we've had to keep them a part for the past couple of days.

Ansley is a pretty easy baby so far. She only cries when she's hungry or needs a change and after you take care of that she's fine.

We are very blessed to have a calm and normal pregnancy. We think Ansley and Haddie will learn from each other and will help each other out in time. Thanks for your prayers. God is good.

Baby Time

Is it time for a new baby? Well not yet. Sorry if I got your hopes up. Well not really, it's kind of fun messing with people!

In case you didn't know, Kate is pregnant. Like, very pregnant. 37 weeks today. That's 10 weeks longer than our previous record with Haddie! And today marks the beginning of the possible dates that "Pacman" might come.

Kate has always hated the idea of having to pick a baby's birth date. I think she's always liked the idea of it being a surprise. Haddie's birth was anything butt normal (pun intended) and this time around I think Kate really wanted to experience this as close to normal as possible. Because of the fetal surgery though, Kate is not allowed to go into labor. So we knew eventually the doctor would ask us to pick the date. And two weeks ago she did just that. She said they would want us to make it to 37 weeks (today) but they wouldn't want Kate to go any further than August 8th. So we had to pick a date in that time frame.I told the doctor we'd get back with her on that. And that's when the wheels started turning in my head.

So I proposed the crazy idea to Kate: what if I knew the date but didn't tell her. I'd find a way to make it that she wouldn't know until the day of. And what's crazier than that idea is that Kate agreed. Kate "I Love To Have My Plans" Williams agreed. I got the doctor and nurses on board and picked the date.

And here we are. Some folks have started taking bets. On the date. On the gender (which neither one of us knows) and the two names we picked out (which we ain't telling).

We are very blessed and excited to get to experience this. If you want some insider information before placing your bets there's one person you can ask...and that's Haddie. I've told her to keep the date a secret. Give her some ice cream or chocolate and she might tell you.

 We'll post again when Pacman arrives. God is good.