What's New?

I have not posted in ages. It feels strange to sit here and stare at the cursor blinking on the blank page.  I just have to post this today, because we've got the best news. I have been crying tears of joy for at least an hour now. 

This morning I attended  an IEP meeting at the school. It's an annual meeting concerning her status in both PT and OT. I am happy to announce that she has not only met, but exceeded many of the therapy goals that they have laid out for her this year. Due to such improvement, her team has decided to greatly reduce the time spent each week in these programs. It will also be on a consult basis, meaning that she can pick it up again at any time should any problems arise. 

I am beside myself. This time last year, we had no idea what was going to happen. We didn't think we'd ever leave that hospital. I've never been that scared in my whole life, and I'm literally afraid of everything. My heart is pounding and its hard to put my emotions into words.

Last month we took the girls to Disney World and had a total blast! Cady had been stressing out about the plane ride since they've never been on one. Since we told them on Christmas that we'd be going in March she had plenty of time to freak out about it. I told her if she wanted to go she's getting on a plane.  A few minutes after takeoff, she asked her sister to open the visor on the window so she could see too! Of course, Addy was practically hanging out the window the whole time. Considering the plane felt like it was made out of Legos, it was a surprisingly easy flight. They did great.

The first day was rough and her legs got tired really fast. We didn't schedule anything that day on purpose because we knew traveling would be enough of an emotional rollercoaster, so we didn't need to be on a real one. We studied up on stroller and wheelchair rentals and were fully prepared to use them, but we didn't need them at all. She limped and swung her leg out a lot the day we did Magic Kingdom and it cleared up after she had a good nights sleep. She kept going like a boss. 

We purposely left a day open to chill by the pool and do nothing. The last few days were better weather. It was overcast or showery earlier in the week, which was nice because nobody got heat stroke. 

Haunted Mansion was NOT a happy ride for my two scaredy cats! Scared the daylights out of both of them. Oops. My bad. I still love it. Patrick went on Space Mountain and loved it. Maybe next time they can too. I was proud of both of them for being brave and well behaved. Nobody complained about anything. Nobody had a meltdown. We had FastPasses for most of the big rides so we didn't just stand around. We rested and didn't try to cram everything in to the schedule to the brink of disaster. An amazing time was had by all! 

I can't stress enough how pleased I am with the school for all the assistance. The level of compassion these people have shown us is top notch. Everyone has been so supportive it's beautiful. Friends and family have been there every step of the way. I couldn't be more pleased with life right now. 

Gotta go! Thanks for reading.

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.