Chronically Awesome!

I know this is usually all about the Finnja and her recent escapades, but this is going to take a little bit of a different feel than normal. It will still have to do with kiddo, but also how it is to be a parent with a chronic medical condition and how it sometimes affects our daily lives and interacting with her.
I was recently asked about my health and how everything has been going. I am sure most of you, if not everyone by now, knows that on April 1, 2009, I was FINALLY diagnosed with Fibromyalgia Syndrome (FM), after being in pain, being exhausted, just generally not feeling well at all for about 15 years. It was a very long process to get that diagnosis. I was treated for so many different ailments, taking me through many surgeries I didn't need, some I did, medications that wreaked havoc on my system, sent me into side effects that were extremely dangerous and frightening, emergency room visits, hospital stays, etc.
I went through over fifteen years of this stuff. That was half of my life at that point. It is a pretty significant amount of time to put into something that you have been told by medical professionals that is "all in your head" even though your body is telling you something else. I felt like I was at a doctors office every week. I would go to specialist after specialist and no one could help or figure it out. They would perform a surgery or give me a new medication or tell me to go stretch or get injections or try acupuncture. None of it was at all helpful. Until I went to a neurologist on April 1, 2009. The day he saw me, he asked for my symptoms, he pressed 18 different points of my body, and diagnosed me right then and there. He told me he could see me, but wasn't totally equipped to handle my case. I am thankful he was honest about that.
I took that information back to my doctors and my Physical Therapists. My Physical Therapist gave me a name for someone in Portland who not only specializes in FM, but she also has it. The light at the end of my tunnel had been found. I got a referral and up to Portland I went, to the Frida Center for Fibromyalgia. Working with my doctor there has been enlightening and amazing. I have found a new hope, a new direction, and most importantly, a doctor who cares and understands, and wants to find answers to help me.
My final appointment was last week. Sadly, with insurance companies the way they are, and funding such as it is, the doors to the Frida Center are closing. It makes my heart so heavy to know that they have done such great things, not only with me, but with so many other people. I would not be any where near where I am today with out Dr. Genevra Liptan and her fellow doctors and nurses at the Frida Center. Hopefully we can keep in contact and I can see her when she finds another place to practice.
So a little on Fibromyalgia...if you have never heard of it, it isn't that surprising, even though it is one of the most prevalent illnesses in the world.  It is fairly "new" in terms of research and understanding. To date, there is no known cause, or cure.  There isn't a genetic link. Symptoms are variable from person to person. Most fibromites are female, but a number of males suffer from the condition as well. Your body is in constant Fight-or-Flight mode. You don't sleep, pain is a daily occurrence, thoughts are jumbled and thinking is difficult at times. You lose words that were right there and struggle through sentences. Arms and legs tingle with sharp pains like they were "asleep", vision issues start to happen, eating becomes an issue, daily tasks become terribly difficult. And that is all on a good day.
If you would like to know what it feels like on a "flare" day, think back to the last time you were really sick, either with food poisoning or the flu. After you were done puking, you feel the soreness all over, the exhaustion both mentally and physically, the fighting to get out of bed, deciding if you would rather sleep or eat, deciding if you were going to go out or stay home, if you would try to get up off of the couch, even deciding if you can  hold your bladder just a little longer so you wouldn't have to get up--that is a flare day. Flares are when all of the symptoms are activated and your body can't relax or let go. Your mind is all over the place and pain takes over your entire system. There isn't much to do except wait it out. You have to be stronger than the pain and the uncomfortable feelings that come with it. You do anything possible to take your mind off it. If you don't, you lose.
I am still trying to get a hold on my symptoms of FM. I am doing a lot better than I was when I first started this journey, but every day is a new step, a new challenge, a new beginning. For me, each day is different. Will I wake up in pain today? Will I have feeling in my hands? Will I have a migraine? Is my back going to hurt? Will stress get to me? All these questions come in. The thing that helps me the most is seeing my amazing wife and my beautiful little girl when I wake up every day. To see them, and get that morning kiss from Shannon, and having Finny run at me with her arms open, her huge smile and giggling until she runs into me, even when it hurts, getting that hug is the best feeling in the world.
There are days when I can't hold Finn as much as I want to. She can't climb on me when she wants to. I can't chase her or get on the floor with her and play with her like I want to. On those days, she and I figure it out. She is learning to be "gentle with Dada" and is learning that I am not pushing her away because I don't want her to be with me, but because it hurts. I have to move her hand off of my chest because she pushed on a trigger point, and sometimes that is the worst thing ever for her, but I tell her to be gentle and give her a hug and redirect her and everything is good in our world again. For being so small and young, she is a very smart kiddo.
She seems to sense when I am having a flare day or just need some time. She gets quiet and will bring a book to me and climb up next to me in the chair or she will bring toys to me instead of me going to where she is to play. She is very cooperative when I need to change her diaper or feed her. When I am feeling good, this sometimes isn't always easy, so it is really nice when I am feeling unwell that she does help out.
It also helps that she is usually more than willing to sit or lay with me in the chair and watch cartoons and take a nap in the afternoon. Afternoons are pretty much when I hit a wall, and to have a little one who seems to need a nap around the same time as I do, works perfectly for both of us. When she doesn't need a nap, however, it makes for a very tired and grumpy day at our house. It is a good thing she is cute, because that is what keeps me from grounding her for  her entire life or sticking her in her crib until mommy gets home. Well, that and she can now climb out of her crib, but that is beside the point.
We get through each day together. With Shannon and Finn. With family who is right next door or right there for us on the phone if we ever need them. With our dear friend Amanda who helps us almost every day. With our amazing friends we see every Tuesday-Ashley, Megan, Erin, Eric, Tracey, Kevin, all of our soccer people. With our friends who watch Finn while we are at work--Korey, Hannah, and Ashley (again ;) ). I wouldn't be able to get through this without you.
Being a parent is hard, but I wouldn't give it up for anything, ever. The love I have for that kiddo of mine will never be replaced or changed or taken away from me. Having a chronic, painful illness while parenting sucks. Would I trade that? Yes, of course I would. But if it meant that I wouldn't be a parent anymore? No, not a chance. I will continue to figure it out and get by. It also helps that I have a high pain tolerance. And a pretty awesome kiddo.

Dare Devil!

Finn has started to develop her dare-devil side. Climbing up on the chairs or couch isn’t good enough for her anymore. No. Now, she has to climb on the chairs, then climb on the end tables to go to the other chair, or to the couch. Or, she has to bring a toy that she can stand on so she can be tall enough to climb on to the coffee table. We get after her for this, but it becomes a game to her, naturally. Every time we tell her no, she laughs and giggles and goes right back to doing it. After the third time, we take whatever object she has been using as a ladder and move it away so she can no longer stand on it for leverage. She then finds the next best thing. It is really a never ending process with that kid. She has no fear. She stands up in the chairs, she ups and down, she leans over as far as she can over the edge. I think Shannon and I have had near heart-attacks because of her shenanigans. She is very clever and knows darn well what she is doing, but she still scares us! We can’t take our eyes off of her for very long, or she will do something that will probably traumatize her, or us, for life.

Every day has an exciting new adventure. It could be a new flavor being introduced (fajitas), or a new game (silicone measuring cups stick really well to baby heads), or a new outfit (hand-me-downs are the best), or a new movie (anything with music). Anything different or new is amazingly exciting for her, and leads to minutes of entertainment for all of us. Yes, only minutes. She is still just a little one, and even if we just get minutes of entertainment, we will take it!

Finny has found her giggle, and every time she does it, she makes my heart soar. It is just uninhibited laughter from her little belly, and her cheeks squish up and her all teeth show, and her eyes squint and her nose wrinkles. It is the most adorable face I have ever seen, and the most beautiful sound I have ever heard. It is much better than the high-pitched glass-breaking screech that she pulls out of nowhere. That will make your ears bleed, let me tell you.

Sleeping in her crib has still been difficult for her. She was fine for a long time when she was first born, and then we traveled a few months ago. When we came back, she has not wanted to sleep in her own crib. It is interesting because when we were away, she slept in a play-n-pack, so it isn’t like we co-slept with her. She just doesn’t want to be in her room or crib by herself. She will sleep a few hours in there, but once she wakes up, she will not go back to sleep unless she is in bed with us. We need to train her to sleep in her crib, but with both of us working full time, and Shannon starting her new job, and me with my stuff, it is hard to have the energy and want to do it. Plus we really don’t mind snuggling with our little sweetie. But, sleeping would be a lot better for us all. Maybe soon, we will find a way to train us all about non-co-sleeping again. That is for another day.

As for now, Finny is still enjoying her donuts every Saturday at NutCakes, enjoying her visits from her many Aunties who spoil the dickens out of her, enjoying pestering her dogs, enjoying visiting her friends at the Sports Park, and enjoying being the best, most rambunctious little 16-month-old she can be. She is so full of love and life. We count each day as a blessing with our Lil’ Bug.

It's been a while...

I haven’t written on here in a very long time. It hasn’t been for lack of wanting or lack of feeling like it. We have been in the eye of the storm we call “Hurricane Finnian” for a while now, so there you have it. We really wouldn’t change a thing, though, so bear with me.

So last we checked in, she was eight months old and had her first tooth. Fast-forward to almost 16 months old, four teeth on top, five on the bottom and four molars coming in all at once! It has been a nightmare of a few weeks, to be sure. One thing we have discovered is the power of Grape Tylenol. Not Cherry, mind you. Grape. She loves her grape flavored medicine and pretends to put up a fight, but turns her head back (most of the time) to take it all, like the big girl she is.

Finny is a very independent little girl, finding it frustrating when she can’t climb up on the couch or chair without help. She likes to figure things out on her own, and when she does, she looks to anyone around her for approval, smiling and clapping, and expecting others to do the same for her, which we do. How can we resist, really.

Finn has many words, and has even started putting small sentences together to get her points across. Her signing needs work, but that is more our fault than hers. When she is hungry or thirsty, she stands at the gate to the kitchen and makes noise to get our attention, then we follow her and she points to what she wants; either the cabinet for a treat, or the fridge for food or drink.

She loves going to soccer at the park to see all of her friends, big and small. Finny loves her buddies and is always waiting to show off something new that she learned. When we have visitors at our house, she never hesitates to show people a favorite toy or book, or how she can crawl through her tunnels or sit in her chair. Her collection of zoo animals and super heroes are always one of the best things to show people, along with a book or two. Don’t be surprised if you ever come to visit, if you get invited to play with her Little People toys or asked to read her a book.

Finny is an amazing little soul. She is so loving and gentle, with a huge personality already. She will give you a hug or kiss when you want one, or just sit with you when you need company. She is the best at making you giggle, as hers is infectious, and she is always smiling or laughing. Her impromptu dance parties are nothing short of amazing and you can’t help but join in. And then there is her little voice. Even if you can’t understand her, you really can seem to know what she is talking about. She is just brilliant.

Finn has learned many things in her short time on this rock. She knows how to play peak-a-boo, how to put on her shirt, and take it off, how to use a fork (mostly), how to put on a hat, how to change the pictures on my phone, send texts, destroy the living room in three seconds, etc. Today she learned how to turn on a flashlight, which was HUGE! She still needs to learn that the light actually comes FROM the flashlight, and isn’t a separate thing that is on the wall that can be held on to, but we’ll get there. She also knows to answer “no” when asked if she wants to go on a motorcycle ride. She also learned how to steal donuts (something we will not be encouraging). Her fastball needs a little work, but her change-up is right on. I think the Sox should be coming to our door soon to check on their best prospect. They need a good closer after last year’s meltdown. J

Our little girl is growing up so fast. When she was tiny, I remember saying I couldn’t wait for the day that she could walk and hold my hand. Now that she is there, and it is so awesome to have that with her, I kind of miss that tiny little cuddle bug sometimes. But then I look over at that squealing little monster playing with her Little People Garage and licking the dog’s face, and I don’t think I want to go back. There’s so much more to learn and explore together, with us, with our family, with our friends, with everyone who loves our little girl. She is lucky to have them.

And we are all so very lucky to have her.