Angel Wings

This afternoon, our sweet Connor traded in his Superman cape for angel wings. We read him his favorite books, played his favorite music and movies, sang to him, talked to him, prayed with him and held him tight as he fought like a warrior to stay with us. When and only when he was ready (typical Connor style), he ran into the loving arms of Jesus where he belongs. He is finally free from all of the pain and suffering; able to see again and run, jump, walk, fly, and eat whatever he wants. Today is Connor’s birthday in heaven and while our hearts are broken into pieces, LOVE remains. There is a very special book my Mom gave me called “Jesus Calling – Enjoying Peace in His Presence” by Sarah Young. I highly recommend this book. There is a short journal dialogue for each day of the year and I wanted to share today’s with you as it just seems so relevant.

“CONTINUE ON THIS PATH WITH ME, enjoying my presence even in adversity. I am always before you, as well as alongside you. See Me beckoning to you “Come, Follow Me.” The One who goes ahead of you, opening up the way, is the same One who stays close and never lets go of your hand. I am not subject to limitations of time or space. I am everywhere at every time, ceaselessly working on your behalf. That is why your best efforts are trusting Me and living close to Me. ” Hebrews 7:25; Psalm 37: 3-4

We want to let everyone know that the Celebration of Life service for Connor will be in Loveland, CO (likely in the next few weeks to allow for people from out-of-state to make travel arrangements) and we are planning another special get-together in Idaho. We will let you know as soon as we have all the details. Thank you to all of our family, friends, and followers for the outpouring of the love, prayers, and support throughout this journey! A special thank you to Corwyn’s Cause, Connor’s amazing medical care team at St. Luke’s, Idaho Pediatric Therapy Clinic, and Heart n’ Home Hospice for their outstanding care, kindness, and support for our family. We love you all!

We would like to dedicate this special song to Connor tonight! Well done Superman!!


Our Make Believe Wedding

Connor always loved playing make-believe, especially with me, his Mama. I think every mother of little boys looks forward to the day her son says he wants to marry you or in Connor’s case, “I’M GONNA MARRY YOU!”. He used to tell me this all the time and it was the sweetest thing ever. Tom would explain to him that I was already married to him and Connor didn’t care one bit. He was determined to marry me no matter what, even if it meant sending Dad away! Connor and I had planned every little detail. We were going to have a pumpkin themed wedding. Connor loved pumpkins and everything Halloween!!! He would wear his Superman costume of course. I would wear a Wonder Woman costume and have a beautiful yellow dandelion bouquet. Connor always picked dandelions out of the yard for me! We would play the best music; Bruno Mars, Michael Jackson, CCR, Lynyrd Skynrd, Tom Petty, The Nightmare Before Christmas soundtrack, etc. We would dance to our song, “Have You Ever Seen the Rain” by CCR. We would have a picnic dinner and sit on blankets on the grass. The food was the most important thing! There would be hotdogs, lots of pickles, fruit salad, root beer, and a big pumpkin cake. And we would live happily ever after, driving off into the sunset in his little blue Cozy Coupe car!

When we found out about Connor’s diagnosis, we made a bucket list. The last thing on the list was keeping the promise I made to Connor to have a make-believe wedding and we did just that. On Wednesday February 20, 2019, we got married at home in Connor’s hospital bed. Tom officiated for us and I can’t put into words how much it meant to me. I had picked out a very special song when Connor was little for the mother-son dance that I would play and we would dance to at his wedding, if he ever wanted to get married. I played this song on my phone as I took his sweet little hand in mine and we “danced”.


Light in the Dark

As many of you know, Connor has had a lot of ups and downs lately and he is struggling more often. Tom and I have had some of the most difficult conversations with doctors that a parent can have but it is important to us to prepare as much as possible for Connor’s ever-changing needs. One of the biggest decisions we made is to start hospice now. His hospice nurse is coming on Monday to see him and create a regular schedule, which can change week to week based on his specific needs. This will allow Connor to be in the comfort of his own home as much as possible and eliminate many exhausting trips to the ER. They will take care of all of Connor’s pain management needs and provide any needed durable medical equipment such as a hospital bed with seizure pads and a Hoyer lift. They can even do some x-rays if needed and all of his blood draws at home! Through hospice, we will have an RN, CNA, Social Worker, and a Spiritual Care Provider. Volunteers (who can help in a variety of ways including Respite Care) are also available by request. Also, it just so happens that one of the on call nurses for hospice apparently lives a few doors down from us! We are so happy that we are able to keep Connor’s Primary Care Provider and Patient Care Coordinator through St. Luke’s! They know him best and we trust them to help us make big decisions concerning Connor’s care.

We were approved for 20 hrs./week for Personal Care Services and are hoping that will start next week some time. This person will basically be there to assist me in all of Connor’s daily needs such as brushing teeth, bathing, dressing, diaper changes, transfers, stretches, etc. They can also travel with us to doctor’s appointments and care for Connor while we focus on talking to the doctor. That would be a huge help!

Last week, we met with Connor’s new Neurologist who was highly recommended to us by friends. We were impressed with him and his approach to Connor’s care. He had brand new ideas and together, we came up with not one, but three possible plans moving forward to get Connor’s new seizures under control. He wants the least amount of meds possible and we completely agree with that. We are changing the dose on Connor’s two current seizure meds with the goal of getting him to just one med if at all possible. If it works the way we want it to, he will have full seizure control and be more alert at the same time. If we can’t get seizure control on his current meds, we will try Epidiolex (the new FDA approved CBD oil). And we discussed Vagus Nerve Stimulator (VNS) therapy as a last resort, however we feel Connor is too weak to go through any surgery at this point. Due to the fact that Connor’s oxygen saturation levels have been dropping so much, Connor will be going in for a sleep study soon. This will tell us if he is having any kind of sleep apnea. His PCP thinks he may be having central sleep apnea due to his nuerodegenerative disease. Basically, when this happens, the brain doesn’t tell the body it’s time to take a breath. If that’s what’s happening, he will be put on CPAP which is positive pressure oxygen. Connor is also having trouble coughing or clearing his throat which really bothers him so we are looking into getting him a Cough Assist Vest.

As stressful and emotional as this has been for us lately, we know that God is lighting our path and surrounding us with all of the angels Connor needs. We want to thank our family, friends, and followers for all of the love, prayers, and positive thoughts. It is lifting us up and helping carry us through this more than you will ever know.

With Love,

Tom, Renee, Jake, and Connor


Memory Lane

Often times I find myself traveling down memory lane, going back to moments of Connor that seem both like yesterday and long ago. I have so many memories but it’s the videos and pictures that really get me; all the details we tend to forget as the years pass by. It’s as if I am opening the most special gift each time and it never gets old. I am grateful that I took the time to capture/record everything that I did. At times, I’m sure people thought I was somewhat obsessed with taking pictures and videos. In retrospect, it was so much more. It was like God was nudging and encouraging me because at the time, it was only he who knew what would unfold years later. He knew I would need those little gifts to stay afloat in the biggest storm of my life. Sometimes they bring smiles and laughter and other times tears, but it has become an important form of therapy for me. When I see Connor in videos and he is talking, walking, running, exploring, or eating (which was always his favorite thing to do :)), I want to reach out and hug that little boy. On the hard days, it reminds me that that little boy (my sweet Connor) is still here, just hidden behind a ruthless disease that is determined to take him from us. We will never stop fighting. Together, we look Batten Disease in the face every day and say “not today” and we continue to make memories and love each other because that’s all that really matters…LOVE

We would like to share some of our favorite memories with all of you so several of our upcoming blog posts will contain a short video or a picture. Here’s the first one. May 26, 2013 – Connor was just 23 days old. He has always loved spending time outside, listening to the birds and feeling the breeze on his face! The cute rhino outfit he’s wearing was one of my favs 🙂

A Letter to My Jake

Dear Jake,

I’m so proud of the young man you have become and I want you to know how much you are loved every single day. You have sacrificed much in order for Connor to have the level of care he needs. It’s not fair. No brother, no teenager should ever have to go through what we are going through. Dad and I are doing our best to try to give you as normal of a life as we can. Thankfully, you have a great group of friends who are always there for you too. And they are all kind to Connor, always making sure to say “hi” or talk to him for a while when they come over. Friends like that are a special gift. There are so many things I love about you. You are a goofball. You love music and all things outdoors. You are good at everything you try. You overcome every obstacle life puts in your path. You don’t care what other people think about you. You are smart, handsome, and have a kind heart. You know when I need a Jake hug. You make the best mac and cheese. 🙂 You are a wonderful son, brother, and friend. No matter how busy or stressful or crazy life gets, I am always here for you. I LOVE YOU!

Mom

Merry Christmas from the Perran Family!

We would like to take this time to wish everyone a beautiful, Merry Christmas! This year, Christmas feels extra special in our house. Our hearts have been touched by prayers, positive thoughts, and blessings all year from family, friends, and kind strangers. We have kept things as simple as possible this year; one party, a night out enjoying lights, music, and carolers, a gorgeous tree, only the most special decorations, baking, movies, and lots of snuggles by the fire. We are happy to share this good news: Connor’s 24 hr. home EEG results came back showing no seizure activity, the Botox injections he had in his legs about a month ago have been very successful in reducing pain and spasticity, and he has been much more alert off and on after taking him off of one of the sleep meds. Tom is taking some time off of work and Jake is on break so we are looking forward to some family fun!

Main Photo and Santa Photo Credit: Little Heroes/Photography by Kam

Thankful

We hope that all of you had a Happy Thanksgiving! We are beyond thankful that the four of us and our two fur babies got to celebrate another holiday together. Connor has been sleeping through most of the day lately but we had an extra special Thanksgiving this year. Jake created “the menu”, helped me make dinner and set the table. We have been having fun spending time together in the kitchen! We loaded our plates up with delicious food and pushed sleeping Connor in his wheelchair up to the table. We timed his afternoon feeding so that it would coincide with dinner and we could all eat together. It was about 4:00 in the afternoon.

Just before we started to say grace, Connor woke up for the first time that day and not only was he alert and in a great mood, he was vocal and wanted to party. 🙂 He got a little taste of his favorite cranberry apple sauce and pumpkin pie. As I was sitting on the couch next to Connor in his wheelchair, he said “Ma”, grabbed my hand with his little hand and pulled me in close to him. Later in the day, he did the same thing with Tom. He said “Da” and pulled his hand close while Tom sat on the floor next to his wheelchair for a long time. Connor loved spending time with big brother Jake too! We will always cherish these special memories together!

For the next two days, Connor was more awake and playful than normal. It’s as if God knew we all needed that. We visited friends and spent a lot of time at home lounging around, eating leftovers, and enjoying endless cuddles. We played games and watched movies and Jake played the piano with Connor.

And then, for some reason, Connor was up all night long and had a really rough night. He is back to sleeping through most of the day, only awake for short periods of time. We are reluctantly trying to adjust to what we feel is the “new normal”. He had his Botox injections a few days ago to help decrease spasticity and slept through the entire thing. He has an upcoming 24 hr home EEG to monitor for any seizure activity. We are in the process of trying to get PT at home because it is getting to be too much for him to go to PT, even though it is only once a week. We feel the weight and fear of what is ahead whether it be weeks, months or years away but at the same time our hearts are filled to the brim with love, faith, hope, and gratitude. Batten Disease can never take those things from us.

When Laughter is a Miracle

Connor laughed today, not just once but multiple times!!! He still smiles sometimes but hasn’t actually laughed for months. Oh how we missed that sound! We thought his laughter may have been gone forever and then there it was, out of the blue, like a surprise package from God. We were singing and dancing together on the couch while big brother Jake was being an awesome DJ, playing Connor’s favorite songs. We will never forget today. And to make it even more special, Grandma Toni and Grandpa Wally from Arizona got to see it too.