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.