21 Years

 Happy birthday to my dear Kellyanne. I can’t believe it’s been 21 years. Like every mom, I can bring back the day she was born like it was yesterday. She was perfect! A beautiful baby girl. Years later, when she was diagnosed at the age of 3, I felt my world collapse. I felt helpless and despondent. It took a while for the reality of the situation to sink in. I remember an outpouring of love from many people. I remember talking to my Uncle Chuck, sitting on my kitchen floor, sobbing. I don’t remember exactly what he said, but it helped get me through. I remember cards and meals, phone calls and visits. I remember going to lunch with my friends Geri and Chris and again, while I can’t remember all the details, all of those things helped me through. I remember trying to predict the future..an exercise in futility. The years moved along, we adjusted to new normals along the way. Kellyanne was a shining light even through the darkness of her reality. Today, I still try to predict the future, more so than ever, now that she’s getting older (as are we) still, an exercise in futility. Together, our family makes it through. We still have an abundance of people who love us and Kellyanne. My sister, Susan and I FaceTime twice a day just to check in and we always talk about how kellyanne is doing. Over the past several months, these calls have been lifesavers! I couldn’t do this without my husband, Michael. Together, we are better! So here’s to Kellyanne. A beautiful young lady who teaches us that life is complicated, but 100% doable. As we maneuver through these difficult days, I look for glimmers of hope that one day we will accept with grace our new normal. Though I won’t stop trying to make it a little less intense. I love you you, Kellyanne. Happy birthday, baby girl. Love, Mommy.

Rare Disease Day

 So February 28 is World Rare Disease Day. Kellyanne has Subcortical Band Heterotopia which means her neurons did not migrate properly during gestation. Her band is very thick which means she has severe developmental delays and seizures. She also has Lennox Gestaut Syndrome which is a rare type of epilepsy characterized by multiple seizure types that do not always respond to medication. I think back through the years and realize how truly blessed we are to have Kellyanne as our daughter. Lately, we’ve been going through a rough patch but I’m hopeful that will pass. What she has taught us about life is that you can’t control it. As much as you try to or as much as you want to, you just can’t. We don’t know from day to day what is in store for us. Frustration, weariness and fear are what we live with every day. Michael would question the fear, but as a mom, it’s definitely something I live with. We also live with hope, gratitude, and peace. While our house is far from peaceful, I think deep in our hearts, knowing that we are not in control brings about a peace that you can’t describe. I live with anxiety. Quite incongruent, I know. But my peace is deeper than my anxiety. It’s knowing that God is in control. I’m thankful for my faith and the deep peace it brings. For Kellyanne, on this day, I wish her health and happiness. I feel on some level she struggles as much with her disease as we do, if not more, as she’s the one living with it. As a mom, you just want to make things better…and I can’t . That’s the pain in my heart. Please pray for Kellyanne and for us. We need the prayers. Thank you xoxo

Picking Battles

When it comes to challenging behaviors, you learn to pick your battles. We’ve been doing a lot of battle picking lately. With Kellyanne, we deal with horrific side effects from seizure meds. The good news is, we have decent seizure control right now. The bad news is, we have terrible behavior. Unless you’ve witnessed it, you can’t even imagine what our sweet girl is capable of. I wish I could get inside her head, just to see what’s really going on. I know Kellyanne doesn’t want to behave this way, I truly believe she can’t help it. While she does show remorse when she gets home from school, I don’t think she can stop herself when she is actually in a rage. I’ve been looking for a psychiatrist to assess if there is a medication that can help her in this area, but I haven’t been successful in finding one. They’re either non existent or aren’t taking new patients. I feel so helpless in all of this. I know help is out there, I just have to find it. It’s exhausting…so is picking your battles. 

Connections

 Thank God for sisters! My sister is one of my strongest connections. We FaceTime daily (most days twice) and she is truly my lifesaver. She keeps me sane just by connecting with me every single day! Kellyanne also has a strong connection to her Aunt Sue. She loves her deeply. We were lucky enough to have her come visit for a few days. Michael was at the bay working on the house and she came up to help and provide moral support. As I’ve suggested in earlier posts, Kellyanne’s behaviors have been quite challenging lately. It's not easy letting someone into your chaos, but my sister, well, she's my sister.  Susan was able to come and support me both physically and emotionally - a true blessing. She was able to dance and play with Kellyanne, which was a huge highlight for Kellyanne. I'm thankful for all of the connections I have in my life. Michael, my children, my friends and relatives...each one so important, so necessary. If you are reading this, you are a connection and I thank you for the role you play in my life!

Trust and Pray

 So today was a crazy day. First of all, Kellyanne’s bus broke down right in front of our house this morning. She had already gotten on the bus and when it didn’t leave, I got worried that something was happening with Kellyanne so I of course,  sent Michael out to check what was going on.  Mechanical issues. He brought Kellyanne back inside and we waited for the new bus to come. She was a little ruffled by all that, but she did eventually got to school. Shortly after lunch time I got a call from the high school, which always means a seizure. Sure enough she had one while working at Michael’s. Since she was acting okay we decided to have her come back to school on the bus rather than me go get her. Unfortunately, I got a call about two minutes later saying she’d had another seizure (very rare for her to have two in a row, if ever) Off I went to Michael’s! When I got there 10 minutes later, there was an ambulance and fire truck outside, lights flashing. I knew that she must have had another one. The paramedic recognized the face of a worried mother right away and led me to her. When I got to her she was on the stretcher, kind of zoning out. After talking with the paramedics and her teachers and of course a phone call to Michael, we decided that I would drive her home and contact the doctor. As it turned out, she started to have another one and I was able to administer her rescue meds. Going to the hospital was certainly an option, but we decided to let the medication do its thing, knowing that I could call 911 if needed at any time. I held her hand the whole ride home and we made it safely. She is, thankfully, back to her normal self. Waiting to hear back from the doctor to decide next steps medication wise. I’m so very grateful for her wonderful and caring school staff. They were right on top of everything and had Kellyanne’s well being as top priority. I’m also so thankful for the EMT’s for taking care of Kellyanne. 

On a final note, I have to say I’ve come a long way. There was a time I would have spun into a whirl of anxiety. It’s funny how you get used to a new normal. I took comfort in the fact that Kellyanne was in good hands until I got there. Seizures are an unwelcome part of our life, but part of it nonetheless. The best I can do is trust and pray…like I said, I’ve come a long way. 

Thanks for listening.

Strange Music

 As I’ve mentioned before, Kellyanne is really into music and dancing. Every night after she takes her pills, she gets to listen to “the speaker” If its daddy’s phone, she’s listening to “rocker “ music. If it’s my phone she’s listening to 80’s hits, not that I choose 80’s hits, it’s just a playlist she likes. As I sit and listen to these songs of my youth,  it takes me back in time. I remember listening to this music in high school and college.  It was background noise at the time, Music has never been a big part of my life. I like it enough, but let’s just say, I can go on an 8 hour car trip without the radio. Funny how now when I listen to it, memories come flooding back…friends, places, events. I smile at the memories.  I think the music has more meaning for me now than it did back when I was younger. It has a way of taking me back to a time where life was just a little bit simpler which, I have to admit, is a nice little escape. 

Don’t Mess With My Dancing!

Kellyanne and I are by ourselves this weekend. Michael and Eilís went to visit Michael, Jr, in Providence. (Go Friars!! Great win against St. John’s.) We’ve spent most of our time listening to music, her favorite activity as of late.  Today, I decided to take Kellyanne to ZamDance which is an amazing program run by an amazing woman. It’s an hour of music and dancing for individuals with special needs. Very high energy! The bonus was that Kellyanne was happy to go. Lately she doesn’t want to go anywhere, so I considered this a win. We went and met some wonderful people and Kellyanne was loving showing off her stuff. As I was watching her dance, I noticed her bending at the knees and slowly going back. Luckily, I caught her before she fell and was able to drag her to the side. I was immediately flanked by very caring individuals who offered assistance. Kellyanne got it together and didn’t want to leave so she sat in a chair and clapped to the music. Eventually she got up and danced with another mom holding her hands. She finished out the class and wants to go back next week. While seizures are inconvenient and disruptive, they don’t stop her. Go, Kellyanne, Go! 

Love Shack?

 So, Kellyanne’s new favorite song is Love Shack. She plays it repeatedly, and for anyone who knows her dance moves, she spares none. Many, many years ago, the house that Michael lived in was referred to as “The Love Shack” Not quite sure how it actually became to be known as that! Less than many, many years ago, Michael, his cousin Karen, and I had quite the trip to NOLA. There was a bar called the Cat’s Meow (a karaoke bar). After too many Hurricanes someone got it in their head that we would perform The Love Shack, AND, have it videotaped! Not quite the B 52’s, but quite a performance nonetheless. I need to find the video and share it with Kellyanne. Being her grumpy self lately, she probably won’t find it amusing, unfortunately. Her grumpiness is rather unnerving! We get it mostly in the morning and at night. Maybe I’ll rewrite the song and call it The Scream Shack…

7 years Later…

 So it’s been 7 years since I’ve posted about Kellyanne. A lot has happened in those 7 years! Kellyanne will be exiting from Damascus High School in May. She’s been there for 7 years. That’s a long time to be with the same teachers and friends. I dread the day it ends. She ( and I) will miss them terribly. The plan is for us to move to our house in St. Mary’s City where she will participate in an adult day program through The Arc. It will be a lot for her to take in, moving to a new home in a new town, spending her day somewhere other than DHS, making new friends, etc. major life changes ahead which is going to be quite difficult for someone who resists change. While I’m excited about the move, I’m worried about Kellyanne. I just have to hope and pray that all will go as smoothly as possible. 

There’s so much more I could say about what’s been going on with Kellyanne lately, but I always wrestle with the thoughts of her dignity being respected and  not wanting to sound like a complaining parent. I have to admit that writing has always been an outlet for me. I could write in a private journal but I want other people who are going through what Michael and I are going through to hear our blessings and our struggles. There are a lot of people out there. I remember when she was first diagnosed, I went searching for anything I could find. I want people like me, who was so thankful when I stumbled upon information or a blog about Kellyannes’s diagnosis, to find someone else in their shoes.  That is my hope and prayer…to reach others in our position. Perhaps I will find a way to share what’s going on and protect her dignity at the same time. We will see.

God bless,

Beth