Happy Easter!

There is reason to celebrate today – Westley, after six weeks in the hospital, is home. Westley spent 4 weeks on life support and truly is a miracle. He fought so hard and tonight he is resting in his own bed. When I think about all he has been through, I am reminded at how amazing our God is. We were fortunate enough to visit Westley, Tracee and Willie a few times. I know they received a lot of visitors, and we were so thankful they allowed us to be one of them. Westley is proof that prayers are answered and God is the ultimate physician.

The last several weeks have been hard on several Batten kids. Many have fought illnesses and seizures. Some days it is overwhelming and heartbreaking to scroll Facebook and see all of the sadness, scariness and loneliness this disease causes.

Kate has been dealing with her own issues lately. She has had a lot of congestion in her chest and at times isn’t able to cough it up and out. Her cough is typically strong and productive, but by the end of the night her energy and strength is gone, so her ability to cough productively is diminished. There have been a few nights where her congestion has settled deep into her chest and into her left lung, causing her O2 levels to drop and her pulse to increase. It is hard to know what to do when this happens. We can go to the hospital but am not sure what they would do that we weren’t doing at home. We placed oxygen on her, positioned her so her mucus could drain, and did percussion. Eventually she was able to clear her lung and her levels improved. In an effort to help keep her chest clear we saw her respiratory doctor and requested the coughing vest. The vest does percussion on her chest and loosens the mucus so she can cough it up and out and keep her lungs clear. So far it is working well and she is tolerating it. Lauren tried it on for fun and said it wasn’t too bad – comfortable and didn’t cause any pain, upset stomach, etc.

Kate also has had issues with her seizures. This isn’t new information but the reason for them is unknown. We thought it had to do w/ her monthly cycle, but it has become clear that the two are not related. On March 22 she had several seizures within three minutes so we administered her new emergency drug, Versed, and it caused her to stop breathing and her face to twitch uncontrollably. We immediately called 911. Within 45 seconds she was breathing and her face was fine but she was still seizing. In the ambulance the EMTs gave her an IV of Valium and she stopped having seizures. Based on her response to Versed we were given a higher dose of Distat to use if she had another cluster of seizures. On April 9 she started having seizures at 6 am and at 630 Brock gave her Distat. At 8 she was still having seizures, so I took her to the ER. As soon as they called us back her seizures stopped, therefore they didn’t give her any medicine. We were released shortly after arriving. This past Monday, April 14, we saw her neurologist and she increased one of her daily seizures meds. We are hoping this will stop her from having clusters of seizures, thus keeping us out of the emergency room. We also discussed what drugs we can use if she needs an emergency drug. Once again we were given an increase in distat and told to use it and if it doesn’t work, call 911 and administer Versed. The reason we are to call 911 before giving it to her is in case she has another negative reaction to it. The doctor trained us on how to administer the drug and believes that the changes she recommended will make the drug safe for Kate.

Once again we have a new nurse. The agency we are working with seems to have some internal issues, therefore it has high turnover. It is frustrating because we really want a nurse that will connect with Kate, stay long term, learn what is normal for her, what are seizures vs. tremors, and become a valuable member of her primary care team. The last several nurses have been incredibly nice, so we were sad to see them go. Our new nurse is very nice and I am praying she is with Kate for a long time. We also had to let go of a nurse who has been with us for two years. She worked every other weekend, but over the last year her attendance hasn’t been acceptable and we caught her sleeping. We tried to work it out and be accommodating to her needs, but eventually we had to let her go because we need someone who will be here when scheduled. We rely on our nurses; therefore we need people who are reliable, knowledgeable, and compassionate.

We are in the final weeks of planning for the 5K. May 3rd will be here before we know it. We are excited and hope it is a great time. Its not too late to sign-up! Forms are found on this website. If you cant run the day of or aren’t local, you can be a virtual runner. We will also have a few raffle items, 50/50 drawing and bake sale. If you wish to help at the event, please let me know.

I hope you all have a happy Easter and find time to celebrate our Saviors resurrection.

Good-bye Winter, hurry up spring!

Spring is coming soon, right? Kate is so ready to sit in the sun and feel the soft, spring breeze. But who isn’t, right? Kate has done amazingly well over winter. She has avoided the flu and other viruses. Praise God! Over the last few weeks she has had a lot of chest congestion, and that has caused her to cough a lot. We tried to suction her and get everything out so it wouldn’t settle into her lungs but didn’t have any luck. Her cough is strong and productive and she is still able to swallow, so her doctor doesn’t think it is time to use a cough vest or cough assist machine. However, he was concerned with amount of congestion in her chest and length of time she had it, so he asked us to do breathing treatments 4 times a day so we could avoid pneumonia. Within the first few treatments we could hear the improvement.

Over the last week Kate has had issues with her feet swelling, her breathing being rapid and shallow and her heart rate being fast. We think the swelling has more to do with her sitting too long in her chair, so we aren’t too concerned. We are hoping that her breathing issues and heart rate are related to her congestion but only time will tell. We will see her neurologist in a few weeks and I will be asking for a pulse ox monitor like they use in the hospital, so when we have concerns we can monitor it with something other than the finger pulse ox we bought at Meijers.

Overall, Kate is doing well. She seems happy. She doesn’t smile as often as she use to, but I think that’s because she is losing her ability to smile, not because she doesn’t want to. You can see in her eyes she wants to smile, but her mouth isn’t able to do it. Sad!! She has an amazing smile. We are so blessed by her current status. She is fairly healthy, happy and fighting! We continue to pray and believe in her healing. But I am praising God for where we are at in this moment. Her current health status is nothing short of a miracle. I know that may seem like an odd thing to say considering she has a terminal illness and has lost so many of her abilities, but things could be worse! She hasn’t been hospitalized, is awake most of the day, tries to interact with us, enjoys music, school, her family and her favorite tv shows/movies. We are able to take her out with us when we want to go out to eat or run other errands. I don’t take any of this for granted! Especially after the last three weeks!

A few weeks ago I thought to myself, “for as horrible as this winter has been (weather), the Batten kids have done amazing!” Normally winter is very hard on the kids – lots of illnesses, hospitalizations and deaths. I dread the winter months! However, this year, the kids seem to do better UNTIL the end of February – beginning of March. Over the last few weeks several kids have required medical attention and we have said good-bye to too many children. Some of the kids we have met, others we haven’t. With each death we mourn and pray for this disease to go way. One might think that we get use to it, for lack of a better term, but we don’t. Every time we hear of a kid passing away, we are dumbfounded at how it could happen again, and try to make sense of it. Our hearts break and tears drip from our eyes as we think of the parents, grandparents, sibling, etc. who will forever feel a hole in their heart.

Westley is currently in the hospital. I try to not bother his mom too much for an update, but it is all I can do to not check Facebook or text her for one. We love Westley and his family and are praying and believing that he will overcome this situation. He is a fighter and has proven that time and time again. I am going to see him Friday. I wish I was going to their home or meeting them someplace other than the hospital, but it will be nice to see Westley, and visit with his parents. There are several other kids that are struggling. I am going to add a prayer tab to Kate’s website. Please visit it and pray for those kids as well, like Olivia, Jake, Seth, Rex and Casen.

We started putting arm splints on Kate at night. I have been against these things for several months but I have seen how they have helped her. Her hands muscles are more relaxed, allowing her hands to be open more often (not in a fist). They don’t seem to bother her. She wears them while she is a sleep.

We had to change Kate’s emergency medicine. She had three episodes where she had status seizures. Her seizures would last 30 seconds and they would come every two minutes for 2 hours. We administered distate each time but it didn’t help. The doctor changed her to versed, which is not commonly used for seizures in the US. Apparently it is used in other countries, like Canada, as a rescue med. I had to go to Columbus (2 hrs from our home) to be trained on the drug and so far I haven’t found a local pharmacy that fill it if we need a refill. Hopefully it will work. I take that back, hopefully we don’t need it!

There is a family that lives within 20 miles of us and they had a son with Batten disease. Their son passed away and they were kind enough to give us their sons bathroom lift. Brock installed it last weekend. This should make giving Kate a bath a lot safer. It wasn’t too hard getting her into the bathtub, but getting her out when is wet is difficult. We are so thankful for this gift!
We also got a new stander for Kate. It is so important for the kids to get out of their wheelchairs and stand. This keeps their bones strong, the digestive system working, etc. She seems to enjoy standing. It seems comfortable and she seems to like being upright. The stander is approximately the size of a space shuttle. Okay, not really, but it is huge. I wish we had a room where we could store all of Kate’s equipment, supplies, etc. Right now we have stuff here, there and everywhere! This is something we bought with the funds that were raised at last year’s benefit, so THANK YOU to everyone who came out and supported us.

We have a new nurse that works every other weekend. She is from an agency and the agency seems to have some management and communication issues, so we have had a hard time keeping a nurse on staff. We are praying that she stays! There were a few we were glad to see go, but others we really liked and trusted. Rhonda, the new nurse, is great. She is a Christian and is very kind to Kate.
Lauren turned 11 last week. I am still amazed that she is 11. While I love seeing her grow and developing her own ideas and opinions, etc. I am sad that she is already 11. How did this happen? How can I slow this down? In 7 years she will be 18 and that will be here before we know it. I am so blessed to be Lauren’s mom. She is amazing! She is funny! She is compassionate! She has a million great qualities! I am looking forward to seeing who she becomes and the things she accomplishes, but I wish time would slow down a little!
We are in the process of planning the 2nd annual Team Kate 5K. The date has been set (May 3) and the team is working hard to ensure all the details are tended to. We have some amazing sponsors! We decided to not do the traditional benefit this year, so at the 5K we are doing some raffle items, 50/50 drawing and a bake sale. We are excited and hoping the turnout will as amazing as last years 5K. If you wish to run in the 5K or want to be a virtual runner, you can find the forms on this website. There is a tab/page titled 5K forms. We would like to thank, in advance, everyone who supports our efforts to raise money for research and for Kate’s medical costs/needs.

The annual BDSRA conference is in Columbus this year. Since it is in Ohio, the Ohio chapter of the BDSRA is helping plan it. I think it is going to be great. I am looking forward to seeing everyone again, especially the kids.

I had a few speaking engagements this month. I spoke at church, on the radio and at a women’s conference. I had a few other scheduled, but due to the weather they were canceled. Hopefully they will get rescheduled. Each time I speak I realize how much I enjoy sharing how amazing God is! Hopefully one day this will be something I do on a regular basis. Right now I am considering going back to school and have a few colleges in mind that I would like to attend. I really want to go back and get a degree in Biblical Studies, Biblical Ministries or a dual degree. I have a desire to learn everything I can about the God, the Bible, etc. I believe these degrees will help me with my ministry. The only concern I have with going back to school is the cost. I will need to find some grants and scholarships otherwise this dream will be put on hold. Praying God makes a way if this is His desire for me.

I hope you are all doing well and had a great winter! Happy Spring!

(Please remember to visit the prayer request page on Kate’s website)

Thank you again for your support and prayers! We are so blessed by all of you!

5K information and registration form (including virtual runner entry form)

We just started planning the 2nd annual Team Kate 5K. Provided is a link to the entry form. We will also have a 1 mile fun walk. Dog and bikes are welcomed on the fun walk. We will also have a bake sale, 50/50 drawing and raffle items. Hope to see you there!

We are looking for a few businesses to sponsor the event. Sponsors will be listed on the t-shirts and throughout the event. We are also looking for a few raffle items. Let us know if you have want to sponsor the event or donate new items to the raffle. Thanks, Team Kate – Kaye Otto Heilman, Crystal Dawn Dunlap, Brock Benroth, Ellie Benroth.

5k registration form 2014

Virtual 5k registration form 2014

Happiness vs. Batten disease – which wins?

Happiness… What does it mean? How does one obtain happiness? The definition of happy is “feeling or showing pleasure or contentment.” Happiness is the state of being happy. Why do so many people fight happiness? Why do so many people allow anger, jealousy, and bitterness take over their life? Why are some people only “happy” if they have something to be unhappy about?

In the last four years I have been asked why we as a family are happy. How do we maintain happiness in the midst our struggles?

Happiness vs. Batten disease – which wins?

I remember the day we got the diagnosis for our daughter Kate. Happiness was nowhere to be found. Happiness fled our home and darkness set in for a few weeks. Living, breathing, and merely existing became a chore. Tears were more common than smiles. All around us was darkness, fear, and hopelessness. We could have stayed in this state of mind but we CHOSE otherwise. Am I saying happiness is a choice? Yes, that is what I am saying.

(BUT before we go any further, let me say loud and clear that I am not saying depression is a choice. In fact, I believe just the opposite. Depression is a medical condition that requires medical attention, whether that be through counseling, medication or both. Our country needs to remove the shame from mental illness and allow those with it to be open and unashamed. This blog is about those who are healthy mentally yet they elect to be filled with anger, sadness and other dark emotions.)

We chose to find happiness and a way to live again. Kate had been given a death sentence but the truth is she was and is a live. We can hold her, kiss her, and see her. How many years will she live? I wish I knew. However, I what knew once the darkness started to move, and continue to focus on, is that she is alive today. We can chose to be miserable and see only death or we can chose to live, be happy and be thankful for today. Batten disease may claim her life, but it wont claim the hours and days while she is living. It wont claim our happiness. We chose happiness because anger, sadness and bitterness doesn’t bring quality of life but happiness, love and a positive attitude do.

More than happiness, I want joy. If happiness is a choice, isn’t joy. No! Joy is a gift from God. Happiness is like a fair weather friend; happiness comes and goes as life throws junk your way. What do I mean? You may be happy and at peace with life, but then the phone rings and you learn that someone you love has died. Happiness is now replaced with sorrow and you grieve. BUT joy is still there. Joy is deep within your soul and lights the way when darkness surrounds you. Joy is a gift that God wants us to claim. Joy allows you to smile when your world has fallen apart. Joy makes it possible for happiness to find you once again. If you aren’t able to find joy or happiness, seek God first. He is the joy, the peace, the light. Once you have Him, joy will fill you.

Romans 15:13 – May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

Galatians 5:22 – But the fruit of the Spirit is love, JOY, peace, forbearance, kindness, goodness, faithfulness, gentleness, and self-control.

John 16:24 – Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be completed.

So who wins, batten disease or happiness? Neither. Joy wins. Joy has filled our hearts, our home and our lives. Batten disease may win some of the battles and there may be days of fear and darkness, but my God is bigger than Batten disease and He has overcome this world. So today we smile, laugh and trust that Gods plan is right on track. We praise Him for the joy that allows us to get up each day and make memories with our family.

A quick update.

January was busy for Kate. She had several doctor appointments and her equestrian therapy started back up. Overall Kate is doing well. Some days she has a lot of smiles, and other days she is very somber. There are times she wants to smile but she isn’t able to. Her eyes light up but her mouth isn’t able to form a smile. This is something we expected, but again, something we dread. Kate has always had a radiant smile and with all that she has gone through/goes through, she smiles. Don’t get me wrong, we are still seeing smiles and think she still has the ability, however, the smiles are not as frequent.
We saw Kate’s neurologist in January and she was pleased with how Kate looked. We did adjust two of her meds to help with tremors and seizures. So far the changes have been good. The doctor also recommended that Kate sleep with hand braces on (similar to the braces she wears on her feet/legs every day). She showed us how Kate’s hands/wrist are turning in and how it would affect her if we didn’t put them on her. We have had the braces for a year or so but it felt cruel to make her sleep with them on. I just want her to be comfortable and sleep well. If she has a rough night of sleep, her seizures and tremors are worse. She endures so much when awake; I didn’t want to put her through anything else, especially in her sleep. Kate, once again, proved that she is tougher than me and can handle anything you throw at her. She is sleeping fine with the braces on and I have noticed that her hands are open more and not as tight.
We made an appointment in August to see the wheelchair specialists. Our appointment was in January, however, on our way to the appointment we were in a car accident. No one was hurt, but we missed our appointment. I was disappointed because I had some questions for them. Luckily after I made the appointment I found guy in Toledo that specializes in pediatric wheelchairs and fittings. He adjusted Kates chair in September and she seems to be comfortable and well positioned. We will see him again in a few weeks when we pick up Kate’s new stander!!!
In January we also meet with a local funeral home and planned Kate’s funeral. It was hard and tears were shed, but it was a relief as well. My prayer is that we wasted our time and money and Kate will outlive us. I haven’t given up on a miracle, but after watching Heath and Teresa plan Dylans funeral, we knew we needed to plan Kates now, rather than later.
Kate has started equestrian therapy again. I think she missed riding while the center was on a shutdown for the holidays. Equestrian therapy is so good for her core strength. Kate also does physical, occupational and speech therapy. I know these therapies have kept Kate strong and have improved her quality of life.
When school resumed in January, Kate was aligned with two aids. One aid works 3 days a week and the other works 2 days a week. The aids are with her while she is at school and tend to her needs like suctioning, oral care, diaper changes, etc. Due to the increase in Kate’s needs I asked the school to provide Kate with an aid that would be responsible for her and her alone. The other aids in the class room work with all of the kids and they are great. However, I worried that Kate’s needs were getting too demanding for the aids when they had six other students to care for. I was surprised by the schools willingness to provide an aid and how quickly they found them. Most parents have to fight for services but our school has been amazing. They listen to our needs and concerns and have Kate’s interest at the heart of what they do. So thankful and blessed!
There are a lot of events coming up and lots of opportunities to spread awareness about batten disease. February 28 is Rare Disease day. In honor of Kate, please share her story, her website and/or her Facebook page. Help us celebrate Rare Disease day by sharing Kate’s story. We are just starting the process of planning a 5K. We did one last year and we are looking forward to hosting another one in April. I will post details once a date has been confirmed, etc. If you are interested in helping plan, volunteer at the run, etc. please let Brock or myself know. Every year the BDSRA has a conference and each year we look forward to seeing our batten family. This year the conference is in Columbus!! We are so excited to have it close to home and to help with the conference. Because the conference is so close to home we wont have to take a lot of time off work. Typically we take a day or two travel to the conference. Since we don’t have to travel, we are planning a family vacation to Washington D.C. I cant wait to make some memories with the girls!
Thank you for reading Kate’s blog, for your prayers and support! We are blessed to be surrounded by so many caring people. Happy Valentines Day!

Hey what do you know, finally a new update!

Happy Holidays!!! I am not one who usually says that but I haven’t written an update since before Halloween. Hopefully your Halloween was fun and filled with lots of yummy candy. I hope your Thanksgiving was filled with family, friends, love and too much food, and your Christmas was just as wonderful. I pray this New Year is met with health, happiness and joy and will continue throughout the year. As far as Kate is concerned, 2013 was a good year and the lack of an update was a sign of good news. However, the lack of news was also due to a painful, sad and unimaginable event our family is trying to heal from. I will share more about that in a little bit.

I am thinking about the last year and all Kate faced and I am beyond thankful for the year she had. She remained pretty stable and didn’t progress too far into the disease. She has been healthy and happy. Thank you Jesus for this blessing and we pray that 2014 will be just as wonderful. She had some minor issues but compared to other batten kids we are so blessed. In the last two months 12 children have gained their wings (passed away). That means 12 families have empty arms at night when they should be hugging and kissing their kids. The heartache they are feeling is unimaginable and with each passing our hearts break and we are reminded what the future holds for us. HOWEVER, WE ARE BELIEVING IN MIRACELS IN 2014!!

Last week Kate struggled with tremors and seizures. We were praying that it would pass quickly and it did!! Another blessing. We aren’t sure why the change but we are trying to track monthly patterns and schedules to see if anything correlates so we can determine if behaviors, schedules, etc. need adjusted to avoid increases in seizures and tremors.

The girls and I have enjoyed the last few weeks together. I was able to spend most of their Christmas break with them. Some days we sat around the house watching movies, and other days we went out and shopped, ate and visited friends. I thought I would be ready to go back to work at the end of the break but I wasn’t. I enjoyed my time with them and know now, more than ever, how precious every minute is. I am blessed to have a great employer, client and manager. They understand, value and encourage work life balance!!

Over the last month Kate has had a few doctor appointments. We saw an orthopedic (bone) doctor and a pulmonologist (lung). Both appointments went great and assured us that Kate is strong and fighting hard. We consulted w/ the ortho doctor because her scoliosis has gotten worse. The doctor felt that we could control the curve of her spine with proper positioning. He looked at her wheelchair and felt that it kept her in proper alignment and gave seating suggestions for when she isn’t in the wheelchair. Much to our relief, he didn’t think a brace was necessary at this time. We will follow-up w/ him in June to see if her scoliosis is the same or worse and if we need to take any action. We consulted with the pulmonologist because Kate has a constant cough. She has fluid that builds up in her throat and she isn’t able to cough it up and out. Her cough is strong but doesn’t clear her throat. We fear that the fluid will settle in her lungs and cause pneumonia. Thankfully the doctor felt that her cough and lungs were strong. I asked whether he would recommend a cough assist machine and/or vest (vest gently “pounds” on the chest to clear the lungs) and he didn’t think either were necessary right now. We are going to do an at home sleep study to determine whether or not her oxygen levels remain at a good level while asleep. We were pleased with how both visits went and pray she remains strong throughout 2014!! Thank you Lorrie for riding with me and helping with Kate!

Next week we have three appointments for Kate. We will see her neurologist, and a wheelchair specialist, as well as meet with a local funeral home to plan Kate’s funeral. I know, I read it and say it and my heart sinks, my stomach does flip flops and a piece of me dies. First, let me say that we aren’t (or at least am not) talking to anyone about this. It has taken me 2.5 years to get the courage up to call the funeral home and am not sure am ready for it, but to be honest, I will never be ready for this. We decided early in November to take this step and after what our family has been through, more so, what Heath and Teresa have been through, we know it is better to do it now, rather than later. My struggle, other than the obviously one, is what message this sends to God. By planning am I sending a message that I doubt His ability to heal Kate? After much thought and prayer I came to the realization that God knows my heart and he knows that I believe in miracles and that I will continue to pray for Kate’s healing every day until her healing is a reality. Praying the healing is on earth and not in heaven, but trusting God’s plan either way. He knows better than us! So, like I said, we are not talking about this with anyone, so please, unless we bring it up, please don’t ask about our decision, ask how the meeting went, etc. If and when we are ready to talk, we will start the conversation. I hope that doesn’t sound harsh, it isn’t meant to be harsh. I just don’t want to cry… Second, please don’t judge our decision to make arrangements for Kate. This was a hard decision, it was a personal decision and we cant deal with others opinions. We are doing what we think is best for our family. Thank you for understanding. Now, on to the other appointments; the neuro appointment should be simple and quick. I have a few questions but like I said, she is doing well, so we shouldn’t have to discuss anything scary or sad. The wheelchair assessment almost seems like a waste since we have found a great company that adjusted her chair a few months ago. However, we are going to see if we can do anything else to keep her safe, comfortable and healthy.

At the end of November Brock, Lauren, Kate and I went to southern Ohio to visit Tracee, Willie and Westley McKinley. Brock, Lauren and Willie went hunting while Tracee, Westley, Kate and I spent time together. We had a great time talking, catching up and just hanging out. I love spending time with Westley and his family. They are very kind and loving. I know I have said this before, but it is true each time I say it, I love spending time with other batten families, especially other Late Infantile families. They know our struggles; don’t shy away from the daily routines like tube feeding, medicine, diapers, suction machines, etc. It is comforting to be around people who have a similar lifestyle and can help if you need an extra hand. Our family and close friends provide us with same kind of support and we are thankful for each one but time spent with the McKinley helps us feel “normal”. Thank you Tracee, Westley and Willie and for allowing us to stay with you and for allowing Lauren to hunt on your property. You were great hosts!!! Hope to see you all soon!

As I said in the beginning of this post, our family has faced the hardest tragedy it has known. And by our family, I don’t mean just Brock, Lauren, Kate and myself. I mean our whole family and more specifically Teresa, Heath and Tori, along with Kathryn. As many of you know my nephew, Dylan, became sick unexpectedly. He went into the hospital on Nov 14 and passed away on December 8. He fought hard and was brave throughout his battle. His prognosis was good but his body didn’t respond to the treatments as the doctors expected. However, we remained optimistic and thanked God for each accomplish, whether minor or large, he was able to make. One night I sat up with Dylan’s mom Teresa and we just watched the monitors in Dylan’s room. We were so excited to see his heart rate increase, to hear his other numbers were moving in the right direction, etc. We really felt that Dylan would win this battle. We even talked about the fact that we would look back on that night in six months and be amazed at how far Dylan had come. Naive, wishful thinking, or blind to the reality of Dylan’s situation? Perhaps, but that hope is what kept the family going and we are a family that believes in and prays for miracles. We honestly felt that Dylan would be a miracle. However, that was not the plan and now we are trying to find a new normal. Nothing about life without Dylan seems normal and I don’t think it ever will. Christmas day was very hard. I missed his voice. I missed him wrestling with his dad and Brock. Mostly I missed his smile. Why Dylan? Why is our family facing another trial? Answers we may never know but we are thankful for Dylan’s life and the blessings that have come and continue to happen since this all started in November. Please pray for Heath, Teresa, Tori and Kathryn. It is daily struggle to face life without Dylan. People ask how they are doing and I am not sure how to answer that. They are moving forward but they need time to heal, time to get established in the new normal, … just time. Time will bring healing but time cant heal them 100%. So please keep them in prayer this year as they will face many 1st – 1st birthday without him, 1st Mother’s day/Father’s day, 1st family cookout, 1st taco night, etc. We love you Dylan and we miss you terribly!!!

Please continue to pray for Kate, our family, the other batten families, and the doctors and scientists who are trying to find a treatment and cure!

Thank you all for support in 2013. Your support via prayers, friendship, encouraging words, etc. helps keep us strong, focused and able to care for our girls. Please know that if we can ever repay you with the same type of support, we are here for you!

Busy but Thankful for so many things!

Life hasn’t slowed down since the benefit. I was hoping to get this blog written three weeks ago but life has a way of happening. Brock and I were once again overwhelmed by the support and turn out for the benefit. It is a humbling experience to be surrounded by people who genuinely care about Kate and want to help with her care and finding a cure. Thank you to everyone who came, helped, donated, etc. I wish we could thank you all personally and convey just how thankful we are for your support, prayers, kind thoughts and word and interest in Kate. I know everyone is just as busy as us and dealing with their own health, finance, etc. issues, so the fact that you think about Kate and our family means the world to us. We are forever thankful and grateful.


Thank you to Kaye, Kyle, Jackie, Dale and Crystal! You all are amazing and selfless!!!

Kate is still doing well for the most part. We have an appointment next week to get her fitted for a stander. We are excited about getting a new one for Kate. PT Services allowed us to use one of their standers for the last few years, but Kate has outgrown it. It is so important for Kate to stand to keep her bones strong and work her muscles.

I took Kate to a new mobility company and asked them to look at her wheelchair. We didn’t like how she sat in her chair and felt like it didn’t provide the support she needed. The way she was sitting was allowing her scoliosis to get worse. I was VERY impressed by the new company. The guy who saw Kate is specialized in pediatric. I explained my concerns and frustrations. He listened and adjusted her chair. She is now sitting straight and looks comfortable. In order to support her the way she needs to be supported the sides of her chair are tight but it doesn’t seem to bother her. Her breathing is better and her head doesn’t flop around anymore when she is in her chair. I cant express how amazing it felt to see her sitting straight, comfortable and stable. Such a blessing!!

Kate has a cold, which has caused congestion and achiness. Luckily nasal spray, Vicks vapor rub, Advil and a humidifier have been keeping her comfortable. Since she cant use decongestions like Sudafed it is hard to treat her symptoms but she is dealing with it like a champ! Today she seems better, which we are so thankful for! I am becoming a believer in putting Vicks on her feet at night; it seems to open up her nasal passages and help her breath.

Today was a rough day for me. I have been going through pictures of Kate for an event I am speaking at in a few weeks. The pictures will be part of slide show that plays before I talk. I have been putting this off for a month or two. I never look at pictures of Kate; it’s just too painful. When I look at the pictures I see the life in her eyes and the dreams we had for her future; dreams that may never come true. I see a life that was simple, easy, and carefree. I remember her laugh, her voice, her silly personality and wonder what could have been. Life is easier when I don’t look back. Looking back reminds me of what we have lost. The day-to-day routine is easier to deal with when I don’t think of what we have lost, but rather, what we have been able to hold onto, like her smile, her sense of humor, her loving spirit. We have so much to be thankful for so I hate to waste a minute crying about what could have been, what was, etc. I allowed myself a few moments to mourn the losses. After a few minutes I asked God to take the pain and bring me peace. Just as quickly as I asked I received the peace. So thankful for His peace and mercies, they keep us strong, focused and full of peace and happiness.

Lauren has been busy with volleyball the last few months. She has practice twice a week and games on Saturday. It has been a lot of fun watching Lauren play volleyball and seeing her improve. You can see in her eyes how much she loves the sport. We love what it has done for her self-confidence. She seems happier. This weekend she has a tournament in Bluffton and that will wrap up the season. While I will enjoy sitting in my PJs on Saturday mornings I will miss watching her play. I think Kate enjoys the games as well – the yelling and clapping!

There are several children who are fighting hard right now and need your prayers, please. They are Sophia (breathing issues), Jake (pneumonia), William (pain, seizures), Tatyana (breathing issues, seizures), Olivia (hives), and Mackenzie (pneumonia). Also, Olivias grandmother has shingles and could use all the prayers she can get to help w/ healing and pain. Our Pastor, Nathan, lost his father this weekend unexpectedly. Please keep him and his family in prayer (wife, 3 kids, siblings, etc). Thank you all for your prayers!!!!

Happy Birthday Kate!

Wow, so much has happened since my last update. The most important update is that Kate is doing well and is very happy. I think she is happy to be back in school. Kate’s face lit up when she heard her teacher’s voice at the schools open house. When we returned home from the open house she continued to smile. Over the last few weeks we have had several days of smiles and giggles. I know as parents we sometimes get tired of the noise in our homes and wish for a few moments of silence. I have been there but now that I have a child that can’t talk and rarely giggles I cherish each sound we get from Kate and Lauren.

The weekend before school started the four of us went camping for the first time. It was a great time! We were able to spend time as a family swimming, fishing, and sitting by the camp fire. It is rare that we are together without others joining us so it was nice to have this time together. I think Lauren enjoyed it the most but Kate seemed to enjoy the slower pace, nice weather and simple busyness of the weekend. I think we are going to try and do it again. Thank you to Britt and Jeff for allowing us to use your camper and thank you Mike and Crystal for letting us use your truck to haul the camper!

We recently met Westley, his mom and cousin for dinner in Columbus. Westley had a rough year but has been doing well for the last few months. He looked great. He is such a sweet boy! After we had dinner we went outside to talk and get some pictures. I placed Kate’s hand on Westley’s so she would know he was right by her and her face lit up. I know I have said it several times, but it still amazes me, the connection they have. From the first time they met it was obvious that they loved each other. It was as if they recognized their similarities and didn’t feel so alone in this journey.

Kate turned 7 on September 9. I really can’t believe she is 7! My nephew Dylan’s birthday is two days before Kate’s and my sister-in-law’s birthday is a few weeks before that so we do one big birthday celebration. It was a lot of fun to have the family over and hang out. The weather was perfect, the food was yummy and laughter made the day perfect. Kate enjoys ciaos so a house of 20+ people made her smile! Typically I struggle with her birthday – thinking of gifts, the idea of her turning another year, etc. The week leading up to her birthday was very hard. I kept thinking this is her last “free” year. Her life expectancy is 8-12 years of age, so in my mind anything after age 7 is a gift from God. I know that sounds morbid and I don’t mean for it but that is where my mind wonders some days. I spent a lot of time in prayer asking God to take this heartache and allow me to celebrate the life that is in her today, be thankful for the years we have had and concentrate on the joys of the days to come. Those prayers led to a very peaceful birthday celebration. I have fought the gift issue for the last few years. I want her to enjoy her birthday just as “normal” kids do – excited over toys, disappointed when they open up a box of cloths, etc. However, this year I found peace in the fact that all she has and needs is the love of her family and the other items mean very little. We were able to find some great things for her that she needed, like a new backpack to carry her diapers, food, etc., cloths, hair barrettes, etc. Regardless of the packages we opened, the real gift was we had another year with Kate and it was a great year with very few bumps in the road. Praying this year is just as uneventful, health wise, as last year. Thank you to everyone who joined us in celebrating Kate, Dylan and Britt!

We saw the neurologist recently and she was very pleased with how Kate looked. We really have been very blessed by the rate of Kate’s progression. Over the last 12 months we have made some changes to her meds to keep her seizures and tremors under control and adjusted to her being almost 100% blind (more of an adjustment for Kate), etc. but compared to what some of the other children have had to deal with we are fortunate. At the appointment we adjusted one of her meds to help with tremors and had x-rays done to get a better understanding of how far progressed her scoliosis is. We also asked for a consult on her wheelchair (want her to have the best positioning as possible to slow down the curvature of her spine), and consult with a pulmonologist. Overall it was a good, quick visit.

Last weekend we went to Iowa for my cousins wedding. I don’t get to see my dad’s family often but always enjoy the time we get together. It was very nice to see the family and get caught up on each other’s lives. The wedding was amazing – from the venue to the food to the music – it was perfect. Praying my cousin and his wife have a blessed marriage. Kate enjoyed the wedding as well. It was outside, which is her favorite place to be. She enjoyed the sun on her face, the music and dancing and once again the chaos of a large group. Brock and I were thrilled that the family got to see her smile and hear her giggle.

The benefit is a week away (GULP). Things are coming together and I think it will be a lot of fun for those who come out and enjoy the day with us. We will have hay rides, pumpkins to decorate, a kid’s carnival, bingo, and of course raffles, silent auctions, etc. I go back and forth on whether or not we should do the same type of benefit year in and year out but after reading on Facebook about all the sick kids I know we are doing the right thing. While half of the proceeds go to Kate for her medical needs (cover items insurance doesn’t), the other half goes to the Batten Disease Support and Research Association (BDSRA) for research. We are so desperate for a treatment and cure. Every dollar raised is necessary. Brock and I feel very passionately about our roles in helping find a cure. We aren’t scientist, we arent public speakers who can go before the government and plead our case for medical advancements, we aren’t many things, but what we are is loving parents who will fight like no other to take this diagnosis and make a difference for the kids of the future.

This year we are hoping to raise enough money to buy a new stander for Kate. The one we are using now is too small and it is important to have Kate stand and keep her bones strong. I hope you will join us on Sunday, October 6 from 1-7 at the Vaughnsville Community Center. I promise you will have a great time! Thank you to those who are helping plan!! We have had the same people help us for the last three years. In fact, we didn’t plan or help with the first benefit – our family and friends did it all and we are forever thankful to them for being so caring! Also thank you to those who have solicited donations, have donated and/or have volunteered to work at the benefit! We simply couldn’t do it without you. A special thank you to Michelle Claypool and Julie Branim for walking the streets with me as I gathered donations from businesses. I also want to express our thanks to the businesses in Delphos in Ottawa. You were very kind to us when we approached you for donations!

Over the last week or so Kate has had an increase in seizures as she falls asleep. She is averaging 3-4 large seizures between 9-10pm. We are hoping it is something that will pass in the next week or so but if it continues we will have to speak with her doctor and get some adjustments to her meds.

Please pray that the Batten kids will remain healthy this winter. Winter is so hard on them and if they catch a cold, virus, etc. it is very hard for them to fight it. Often they progress further into the disease when they get sick. It is a scary time of year! Right now there are several Batten kids that are struggling and need your prayers, please.

Olivia – hives due to a medication issue
William – pain and agitation
Sophia – pain, discomfort
Tatyanna – she is in the hospital but is getting better. Prayers for continued healing
Nicholas – increase in seizures
Kate – night time seizures
Mohr family – they are laying their son to rest on Saturday, September 28.

Thank you all for your support, prayers and kindness!

Psalm 107:29-32 – He caused the storm to be still, So that the waves of the sea were hushed. Then they were glad because they were quiet; So He guided them to their desired haven. Let them give thanks to the LORD for His lovingkindness, And for His wonders to the sons of men! Let them extol Him also in the congregation of the people, And praise Him at the seat of the elders.

Feeling Blessed

Kate has had a great weekend. She has been full of smiles and only had a few seizures. Her facial expressions have been those of happiness, contentment and love. She enjoyed swimming and hanging out with family. Tonight I am feeling very blessed and enjoying every minute with her. Thank you Lord for a great weekend not only with Kate, but with Lauren and Brock. I know other children who are struggling with pain, tremors, lung health, etc. Keep them in prayer please. I will be thanking the Lord tonight for his many blessings and lifting our Batten kids up to him.

One of my favorite songs is “Bring the Rain” by Mercy Me. They lyrics state how I feel about this period of our lives and all we are facing. I hope the lyrics speak to you just as they have spoken to me.

I can count a million times
People asking me how I
Can praise You with all that I’ve gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It’s never really ever crossed my mind
To turn my back on you, oh Lord

My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there’ll be days
When this life brings me pain
But if that’s what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what’s a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

Batten Conference and More

Wow, it will be August next week. I remember as a kid time standing still but as an adult it flies by. I hate that in a blink of an eye a month is gone, especially when each day with Kate and Lauren is so precious. The girls are having a great summer. They have enjoyed swimming, going to the park, and various other activities. I hate to see the summer come to an end but it will be good to get the girls back into school.

We just returned from the Batten conference. While I was ready to not live in a hotel room any more I was very sad to say good bye to our Batten family. I cant describe how amazing it feels to be around a group of people that understand our struggles and joys because they are experiencing the same struggles and joys. Don’t get me wrong, our community, family, church family and friends are very supportive and caring, but to be in a room full of parents that have their own Batten angels is an amazing experience. It is also nice to walk around with your child and not have anyone stare at them because they are in a wheelchair, being tube fed, etc.. While we don’t know all of the parents and kids, we all have something in common, which bonds us. Last year was our first conference and it was very difficult. We had made some connections via Facebook with other families and met a few families but for the most part this was our first time seeing kids in all stages of the disease. We saw some kids who could still walk and reminded us of Kate and other kids who were farther progressed than Kate. Emotionally it was overwhelming. This year we knew what to expect and were excited to see some of our friends face-to-face again. Other than meeting the kids and parents the highlights of the conference were the Batten Kids Parade and the Sibs / Parent Panel. The parade was Saturday night before the dinner/reception. All of the kids with Batten were escorted in by their unaffected siblings or if they are an only child a sib from another family escorted them into the dining room. Each child is announced and applauded. I love seeing all the kids! The Sibs/Parent Panel is a meeting between older siblings (unaffected) and parents. Parents are able to ask general questions about their children and the sibs answer as best as possible without breaking any confidence. It is always great to hear from the sibs; they give great advice and ideas on how to raise a non-affected kid with an affected kid. This year we really bonded with some families and I am looking forward to seeing them again. Some of us will be getting together before the conference next year, if all goes well. We also take a lot of strength and encouragement from the parents who attend and have Batten angels. We know one day we may have to say good-bye to Kate, so seeing these families so strong and happy gives us hope that if we say good-bye we will be able carry on without her.

Lauren loved the conference and being around other sibs. They went to the zoo, played with therapy dogs and went to a science museum. Lauren also enjoyed seeing the other Batten kids and loving on them. I had several parents tell me how much they appreciated Lauren loving on their kids, helping the kids, etc. She is an amazing child and we are blessed by her.

At the conference we also learned about clinical trials and research efforts. It is very exciting the things going on in the science community, which encourages us to stay our course with raising money for research. Our 3rd annual benefit is set for October 6th in Vaughnsville. ½ the money raised will be used for Kate’s medical needs and the other ½ will be given to the BDSRA to use for research. We have had one meeting so far and will meet again this Sunday, July 28, to discuss the details of the benefit. Again this year we are raffling off a 4-wheeler. The tickets are $20 each and we are only selling 500 tickets. Please let me know if you would like one. You can reach me via Facebook (ellie willer benroth or holding onto kate).

In 2011 a guy by the name of Noah ran across the US to raise awareness and money for research for Batten disease. He is running again! He will start his run next week, I believe, and finish Nov 2. Please follow his run, share his story and if you feel led, please sponsor him. His website is http://www.gofundme.com/2013RunCoast2Coast

Kate has therapy every Wednesday and my mom typically takes her so Brock and I don’t have to miss work. However, this week I took Kate because we were still on vacation. I hate taking Kate because it so hard to see her struggle with simple tasks. I know it is necessary for her to go and I believe the therapy has helped her remain strong. I also know that I need to take her occasionally to talk with the therapists and see what and how she is doing. BUT it is so hard to watch her struggle. This week they wanted her to knock a toy off of the table by moving her arm. Simple yes, but not for Kate. I don’t say much in the sessions for fear that if I open my mouth I will lose my composure and tears will flow. If I feel this sad, angry and frustrated, how does Kate feel? It is times like this that I could scream at the world how much I hate batten disease, but that anger wont help me and it certainly wont help Kate. So I sit quietly and watch Kate work and struggle and praise her for her accomplishments. The one thing I do enjoy about seeing Kate in her therapy sessions is seeing her orneriness. She loves her therapists and knows how to take advantage of them and make them work harder when she feels like taking a break. I love Kate’s spirit.

In order to create additional awareness around batten disease and Kate’s website we have created a Facebook page. It is titled Holding Onto Kate. Please like our page and follow Kate. We will not be replacing this website. We will use the Facebook page to give short updates, share pictures, etc. We will continue to use this site as our main form of communication. How amazing would it be if we had 500 likes by the end of the day Sunday :) ??

I hope you don’t mind, but I would like to share something that is related to Kate but is not directly about her. Through Kate’s illness God as spoken to me about my purpose in life. My purpose is to share my testimony and encourage others through their trials. My church is aware of my calling and is very supportive of me following this calling. Please pray, if you think of it, that I do this all for His glory and that speaking engagements become available. I have a few things coming up in the future but would love to see my calendar fill with engagements. I am willing to travel and share Gods greatness with everyone. If you have a group or event and need a speaker, please reach out to me and we can discuss whether or not I would be a fit for your group/event. I appreciate your prayers for this, Kate, our family, the entire Batten family and for a cure!! THANK YOU.

Romans 8:28 And we know that for those who love God all things work together for good, for those who are called according to his purpose.