Calm and cool

We are knocking on wood. Things are going really well right now. They are getting back into a rhythm with school and after school projects and homework. I attended a PTO training today at the school and brought the kids along. I want to be more available to help out not only on field trips, but also in the classroom as volunteers are needed. 

I want to be that mom that is always on top of things when it comes to stuff like that. As parents, my husband and I are very much advocating for both of our daughters. That being said, I am not Super-mom all the time. Laundry is clean, but not folded right away. Dishes pile up in the sink. There is always shouting. We are very noisy in our house. Noisy and messy and fun!

We are never afraid of our emotions here. A common saying here is "hey, just because something pops in your brain doesn't mean it needs to come out of your mouth. Can we please find a nicer way of saying that?" It's amazing to me how much I just try to reiterate these simple little sayings to them. As simple as Mister Rogers Neighborhood (or the newer version Daniel Tiger's Neighborhood.) Common courtesy is still important. Please and thank you. No, thank you. I'm sorry. All simple and valid and necessary.

If all I teach my kids is how to be thoughtful and nice, then I have achieved. We are human. Our feelings are valid. Life is short, so let's all do some good. 

Spaghetti!

We  had such an amazing turnout to the supper! I was absolutely blown away by the whole event. Great music, friends, family, good food and a real feeling of love and support. There were all kinds of raffle prizes won, and lots of familiar faces. The girls went with my brother and his girlfriend for the night so we could unwind.

I have learned a lot about myself lately. I have learned that this right now is all I need to worry about. I used to be afraid of everything. I had to sort of let go of the rest so I could focus on the kids. What good would it do to be afraid and freeze up when something bad happens and they need me the most? When people ask me how I can laugh, I tell them it's because I have to. As long as I stay kind and weird, things will be fine. I can handle it. It's when anxiety and depression kills my attitude that days feel longer, people seem cruel, things go wrong. 

Don't get me wrong, sometimes it hurts to  get out of bed. Especially when it's only the second day of school vacation and it's snowing and everyone's screaming at each other. We've already done the Kiwi crate the in-laws sent. We made new crayons out of old ones. We cleaned every room. We even tore all the old clothes we had out of the basement to donate to a local consignment shop owned by Cady's classmate's mother. About fifteen bags and five totes of clothes and shoes and other odds and ends.

I think we've just been in shock for the past month. Trying to get back into a routine and get things back to normal again. The new meds seem to be working as far as we can tell. It's hard to not be paranoid and think that something is wrong all the time. Every little sound or new fixation sets me scratching my head and then I'm up all night surfing the net for my own research.

We are headed down to MGH soon so both Cady and I can get genetic blood work done. We were hoping to go today but got hit with this pouring freezing rain. We'll try to make a day of it and go to the museum or a concert or something. 

She has been re-evaluated by the school board and has been approved for full PT/OT services through the school and even over the summer to prevent regression. An IEP has been put into motion to protect both the school and ourselves legally. This is awesome and awful news to us. She definitely needs it, but it's terrifying to think that she could potentially lose fine and gross motor skills. Whether gradually or quickly, we don't know for sure. 

We just make the best of it. Hopefully that's enough.

Everything is cool.

So there is a spaghetti supper benefit this coming Saturday that some amazing people have put together for Cady. There are tons of door prizes that have been donated by dozens of local businesses to be raffled off. There will be live Blues music, open-mic so anyone can join. It really is an amazing little community here. 

A couple friends have organized an online Pampered Chef party that will be donating a portion of the proceeds to us as well.  

I feel like lately everyone has been asking about how things are going, even people I don't know. Every day I am amazed at how many people really do care.

Cady's birthday was today. She is 7 years old. We can't believe how fast she has grown. I haven't posted much because things have been going pretty well. One thing that raises a major concern is some numbness she is experiencing in both hands. I am not sure about this as she has her own way of describing things. She usually uses words like "fizzy" or, more recently, "crumbled" as descriptive words. She can move them, but she can't feel them. Her teacher has noticed a significant decline in her motor skills since the last incident. So have we. Time to call the neurologist again.

It's hard to stay optimistic. She has good days, and this was one of them. They were so tired and happy when they went to bed it made my heart hurt. I'm glad to be able to share these as well as the bad ones with my family. It reminds me of how fleeting and fragile it is to be human. Blink and it's over. "DON'T BLINK" as fellow Whovians(Wholigans?)would say.

Anyway tomorrow I have to work, and tomorrow night is the spaghetti supper benefit. Should be fun. The amount of people might trigger a panic attack, but I should be fine. The girls will be just fine too. Everything is cool. Good night.

reflections

Today is my 37th birthday. I spent the day running errands alone with time to reflect on the past year. I was overjoyed all day to receive birthday wishes on social media.I went into work to buy stuff for my birthday dinner. Everyone greeted me with even more birthday wishes. This morning I brought my older dog to the vet to treat an ear infection. An uneventful day is always a bonus. I am never quite "at ease" but as an introvert I always feel clearer minded after some solitude.

When I got home I got on Facebook and found a link to a very thought-provoking podcast about "PTSD in mothers(and fathers)of children who have a serious or life-threatening illness." It got me thinking about how I have felt off and on since Cady was born.

I can feel fine and then suddenly hear a noise or something that triggers a panic attack. I wake up from nightmares about both kids that set me off. I won't get into those now. I always wanted to be a horror fantasy writer, but I never imagined that this would be stranger than fiction.

In one of Cady's drug-induced moments in the hospital, I had placed her rigid body on the toilet. She kept leaning over and trying to swipe the blue-and-white tiles like it was part of a game on my phone. Later, I was taking a shower at the hospital and had a moment where I started to wobble and I felt like I was in a big, numb, white bubble. I looked at the tiles and they started to shift. I had to close my eyes to steady myself. Those tiles have always remind me of hospitals.

Everyone is going through something right now that you know nothing about.

"Life would be funny if it weren't so tragic."--Stephen Hawking

I am surrounded by some of the strongest people I have ever known. I know that no matter how messed up life gets that all anyone can do is keep going. Sometimes it's the biggest challenge life has to offer.

confusion

The last several days have felt surreal. The kids are energetic and positive. Cady's back to school and doing well. I honestly don't know how to feel. Along with friends and family and the whole community pooling together and rooting for us.  We've got several local groups hosting benefits. People have gone above and beyond with their donations on the gofundme page. I am in awe of the love and support that has come our way in the past few weeks. It's overwhelming, really. Thank you to everyone for listening and making us feel so loved. It means the world to us.

I suppose I should be happy that things are going so well. The truth is; I'm afraid. It never leaves my mind how dire the situation is. I have nightmares about it. I have panic attacks. Now we have all these other things to deal with through the school like 504 plans and IEP's. We had her evaluated earlier in the year so see if she qualified to receive physical or occupational therapy. She didn't qualify then, but she's being reevaluated now. 

If we're denied again, we will obviously seek those services outside of the school system. I need to prepare some kind of document for the school in the event of an emergency so they have her information on hand. We've discussed PTO training so I can be of some help in the classroom. I don't know what I can help with, but I'm more than happy to.

The school has been so helpful and understanding. All the staff is just wonderful. They have taken her into their hearts along with the rest of the family. From her first grade teacher, to the school nurse, to the bus driver. Everyone.

My husband's work and my own have been incredibly understanding as well. He went back to work yesterday, but I took this week off to monitor Cady and be here if anything should occur at school. We live minutes away so I can be there quickly. She has a checkup on Thursday and I need the pediatrician to fax some stuff to the school. 

That's all I have for today. 

From Patrick

So, I've finally had a chance to settle down and reflect on the past two weeks and here's what I've come to realize...

(1) I have restored faith in humanity. The outpouring of support from friends, family and complete and utter strangers has been very overwhelming. I can't even begin to express the gratitude we feel. To those that have brought us food or supplied gift cards to nearby restaurants and coffee houses, we thank you from the bottom of our hearts. There are too many to list, but know that we know who you are and our hearts are yours.

(2) A village is needed to raise a child. To our community of Lisbon and all the wonderful people that have reached out to offer a hand, thank you. We are truly at a loss for words. The benefits and banquets in the works by multiple establishments is beyond belief. I keep slapping myself wondering if this is all a dream. Nope. These are real, compassionate people that care for the wellbeing of a child in their town. Wow.

(3) Family > everything. This goes out to my older brother Paul Kelleherfor his daily talks on the phone, to my brother in law Dan Bowie and Heather Hesseltine Gamage for being there every step of the way, to my brother in law Jay Bowie for caring for our dogs and always showing up when we need him the most, to my father and mother in law Paul and Linda Bowie for taking care of Addy without question or hesitation, to my father and Debra McKeen Kelleher for always bringing a smile to our daughters faces, to Julia Durgee and Dan Carmody for being a great escape when I was down and out, to Diane Dennison for being the best extension of my childhood I could ever ask for, to Justine Fucci and Frank Fucci and Amy E Biggs for their compassion and daily support, and to Ed Blackman for being an amazing neighbor and life long friend. My eyes are wide open.

(4) Good is alive and well in this world. I hesitated to launch a gofundme page. I did. It tore me to think I needed to ask for help. I've always been the one to reach out -- supported myself and lent a hand when needed. Worked since I was 15 to support not just me but my single mother. Need to pay your car payment? Sure, just pay me back when you can. Short on cash to buy your family food this week? Just take $100 and I don't want it back. But I had to throw aside my pride and do what I could to help my child. I am absolutely floored with the generosity of family, friends, co-workers and strangers who believe in this little girl. I can't begin to explain what you have enabled us to do for Cady with your giving. In the days ahead, I will detail our steps that will hopefully lead to progress towards better treatment of her disorder. Know this...whatever we do with your money, know it will be met with the utmost respect for where it came from.

(5) I've been changed for ever. Have you ever come to a point in your life when certain events are either so traumatic or euphoric that they forever change your soul? The way you carry yourself. What you deem important. What you motivate yourself by every morning. Your outlook on life. I'm sure you have. Well, I'm 100% positive that has happened to me. I feel more human than ever. Mortal. Part of something greater than myself. To find a sliver lining in something so devastating is a challenge, but over the past few days since we've been home I've allowed those feelings to emerge and I'm better for it. 

Thank you for listening.

Daddy's accounts of our recent hospital stay...

March 9th, 2018:

Quick update on cady as i know a lot of folks are asking, which means a ton to us. 

Unfortunately, after three days she is worse than when she came in. She is on her 11th different drug to help her relieve pain and release her very extreme and constant muscle spasm, myokomia and ataxia. She is responsive but her pulse remains tachecardic due to the spasms. Her bladder is spasming which is causing some concern with her CK levels over 4000 -- normal is 500. Runners can spike with the flu at 200,000 so it really is about age and conditioning. We continue to take urine samples to ensure no kidney damage. Her white cells are elevated meaning likelihood that an undetected virus is the trigger, but no treatment for that except fluids and rest. Her ankles are turned in, legs stiff as a board, hands are locked up with her right hand clinched over her thumb and her left bent fully downward perpendicular to her wrist. Try doing that yourself as hard as you can and hold for 5 minutes. Now imagine that for 72 hours. Poor thing.

We continue to wait and be hopeful. I think breaking the virus will cure a lot and get her home, but shows the potential dangers of getting strep throat (which her sister is recovering from), or the flu or chicken pox or lyme disease.

We have a call out to Edward Cooper at Baylor, the foremost researcher of KCNQ2 and expect a direct call in the coming days. We hope.

March 10th, 2018:

She is finally getting past her acute episodes with much needed release of her myokomia and rigidity. Her muscles are like jelly and will need many days or weeks of rehabilitation to get back to normal, if she can get back to normal. Her hands and feet are swollen from the extreme physical impacts of her prolonged 72 hour spasms. She cant walk nor use her hands but i suspect that will change in the days ahead.

We continue to treat her with valium for pain and rigidity and are working with some field experts to balance her meds. She needs to eat, but having a hard time doing so. Since september, she has lost 20 percent of her body weight and now at 7, weighs what she did when she was 4. We undoubtably are concerned about this and are working through options to reverse this trend, but the reality remains that her spasms likely exert so much energy that she couldn't possibly eat enough to counter the calorie loss.

We dont know when we will go home. Addy is noticeably shaken and misses her family, cady most of all. And we miss her terribly. I cant wait for us to be together again -- laughing, playing and just being us.

We know there will be a next time. Our hearts ache knowing this. Cadys pain, addys pain, our pain, our extended family's pain. We will not cease in scraping the ends of this earth to find answers and better treatments. No child should ever be put through what cady just went through.

Good night all. My lack of sleep is catching of to me.

March 12th, 2018:

Today was a good day. Cady woke up feeling rather spry and in good spirits. She still wasn't that hungry but I convinced her to eat some fruit loops with milk. The cocktail of medicines have done a number on her taste buds making most foods pretty tasteless and unappetizing -- but she did what anyone 6 year old should do and listened to her father.

Most impressive was the progression throughout the day of not being able to stand to walking without assistance about 20 feet. Gingerly moving along with wobbly knees, but the leaps she is making encourages both Erin and I that we will be home soon.

We did have a concerning night prior due to her low blood pressure -- dystolic (what comes out of your heart and to your body) was around 42. This hypotension can be rather dangerous for the heart so the doctors were monitoring closely. Thankfully, through improvements in stamina and appetite, she is back to normal. One more night of steady pressure and we've checked another concern off the list.

Cady has been in and out of rather distressing emotional displays, but we try to support her by saying those are real feelings and she has every right to express them. To us, to visitors and to doctors. She broke down earlier for about 30 minutes just repeating "I just want to go home" in a sobbing voice. I think that's justified. We do too.

On a more upbeat note, I found the chance to run home and see the dogs, see Addy at school, talk with school staff and have a quick beer with some friends before trekking back to the hospital. Addy was noticeably sad, but she is such a trooper that understands deeply the severity of Cady's condition and the need for her parents to be at the hospital to support her. We try to ensure that Addy knows this isn't by choice and we want nothing more than to bring our family back together.

I picked up some very thoughtful and rather cute / witty cards that Cady's classmates made. When I brought them back to the room, she read each one with a smile and handed them to Erin who hung them on the wall. Such a sweet group of kids who really care for one another. To boot, both the school nurse (Kym) and Cady's teacher (Beth) came to the hospital this afternoon to see Cady, toting a build-a-bear (named Cassie) that they made minutes before at the mall. A wonderful gesture for sure. I cannot speak more highly of those two. They give me hope for the future of education in Lisbon. I think we are starting to change our tune about wanting to move.

So here we sit, another night in the hospital, waiting for further improvement. The Nor'easter could stymie our chances of going home tomorrow, but if I have my way, we'll make the journey. The road is long with this one, many decisions to make, along with the certainty that Cady will we back. The lingering uncertainty is just how bad it will be the next time? This one was bad, real bad. She's lucky to be recovering.

Thank you to all our friends, family, colleagues, and even distant connections that have reached out to show their support for Cady in a variety of ways. You never really get a sense of the network you carry until you go through something that requires you to lean on it. We appreciate all you have done from the bottom of our hearts.

Good night.

March 13th, 2018:

After a good day yesterday, we are not having a good day today. Cady woke up in high spirits, but she has since relapsed into a full on acute episode of rigidity and dystonia. She is in massive pain and hard to watch. 

Here we go again.