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.