This is more of a personal post than a baking post, one of my “behind the blog” type of posts. And a long one! 2012 has been an extremely busy year here in the Love From The Oven house. In addition to baking up sweets and treats and sharing recipes, tips, my favorite links and more, life behind the blog has been busy, chaotic and sometimes a little crazy.
While I’m not one who is big on “resolutions”, I always feel like the new year is a great time to take stock. To look back. To look forward. To clear out the clutter – both physically and mentally. As I look back, it’s been a very full year. I have been so blessed to have so many wonderful readers visit my website and I’ve been so fortunate to work with many amazing brands, both creating recipes and sponsoring giveaways for my readers. The site has grown and I absolutely love it. It’s my third child. I am thankful that every single day that I get to share my love of baking, develop recipes, work with brands and basically focus on some of the sweetest things in life. The fact that I am able to do that, and earn a bit of a living in the process, is a dream come true. Not only do I get to do what I love, but I get to work it around the needs of my girls.
A nd when it comes to the needs of our girls, they have changed a bit this past year. This year has been spent with many doctors, many specialists, many hours in therapy and having our youngest daughter undergo many tests, from inpatient monitoring in the hospital to an MRI of her brain to genetic testing. After ruling out many things that could be much worse, our youngest daughter was diagnosed with severe apraxia of speech.
Apraxia is a condition that is sometimes seen in a similar way in stroke victims (that is the form that some are familiar with – acquired apraxia, versus developmental apraxia, which G has). The words are in their heads. Their mouths are capable of creating those words. But the message can’t quite make it from the head to the mouth. Apraxia involves problems with motor planning. You plan your words, your actions, almost anything you do. G’s limbs are also affected by it, so controlling her hands are just as hard as controlling her mouth, and therefore sign language is no easier than speaking for her. Also, with apraxia, the more you want to say or do something, the harder it is. So something you might be able to do spontaneously one day while playing might not be seen again for some time and can’t be reproduced on demand. She also has a variety of sensory issues (something I will admit that I truly didn’t even think were even real, just one of those trendy diagnoses of the day. I now find myself realizing I was wrong – and probably uniformed and judgmental as well).
I need to put a disclaimer here, we are SO blessed to have two very healthy and happy girls. Things could absolutely be much worse. I count my blessings every time I put my head on my pillow. But, Grace’s diagnosis does mean a different life, letting go of some of the dreams and plans we had, creating new ones and figuring out an unknown future. It’s a different path, and we are learning and adjusting every day. Apraxia is not something you hear about often, and it’s not always easy to know what is best for her, and it’s taking a lot of time and dedication to figure those things out. But she’s worth every moment of it, she’s the light of our lives, keeps us laughing all the time and is the most incredible gift we’ve ever been given. I just wish I knew what was in her mind. I wish she had more than “more” and “all done” to communicate her every thought and feeling. More what? All done what? I ask myself those all day, every day, while trying to play charades and figure it out.
I also should add that I’ve heard from more than a few people that they think maybe G has autism, and we are just in denial about that. All I can say is that we have been to many specialists. Spent extensive time with therapists (we spend more time with her therapists than probably anyone outside our family). None of them who have spent considerable time with her feel that she has autism. On paper, she certainly shares shares characteristics of both autism and cognitive disability. Honestly, if she had autism, I’d have so many more options for support and resources. We want to do everything we can to get her all of the help that we can, and if we thought for a second that autism was one of her issues, we’d be getting her every resource we could. She does not fit the diagnosis for autism, but she is a textbook example of severe apraxia. I never say never, that could always change, but for now we agree that apraxia is probably the main issue, along with other neurological issues.
We’ve been blessed with incredible occupational and speech therapists. We are at therapy five times a week. Every morning is devoted to therapy. Even with an intensive therapy schedule, supplemented at home, the best therapists and our family being completely dedicated to doing whatever it takes, our very experienced (and adored!) speech therapist does not expect that G will ever use speech as her primary means of communication. At almost three, with almost 18 months of therapy behind us, she only has a handful of words and one sign language sign. She is however great at using the iPad to help communicate her wants, and through the iPad we have discovered she is so much smarter than we ever realized. She is taking everything in. She hears it all, and knows so much. It’s bittersweet to know that she is a smart cookie, but for all intense purposes, can not show that to anyone. She is warm, loving, ridiculously funny, interactive and so badly wants to communicate. We will never give up hope and never stop working to help her find her voice.
This apraxia awareness video sums up what my heart feels when it comes to my sweet littlest girl…
Transitioning into the world of special needs parenting is an interesting one. At first for me there was not so much a denial as there was the mindset of that we will just work really hard, give this 120% effort and fix it. That’s worked with almost everything else in my life. Well, about a year into this, I’m realizing that is not how this works. This is not a sacrifice everything else in your life to put every resource you have in it, fix it, and then put it behind you. I’m waking up to the realization that this is a game changer. This is a life changer. There is no quick fix. There is no easy fix. Frankly, there really is no fix. We are just doing everything we can to make the best of the situation and rise to meet the challenges that are sent our way. My life long way of giving 120% doesn’t solve this problem. Instead I am finding it burns you out. It wears you down. It exhausts you.
2012 has also seen me continuing the role as a care taker (though not live in) to my mother, who suffers from many chronic medical conditions as well as severe mental illness. I’ve played that role for many years, but the last two years have seen the challenges involved rise considerably, with only my brother to assist me, and living out of town, most falls on my shoulders. It’s a hard situation to day in and day out try and help someone who can’t or won’t help themselves. I’m working and learning that much like my daughter’s condition, I can’t “fix” this issue either, though it is hard when you watch someone make choices that will only make their life harder, and then you are expected to come in to clean up the fallout.
My older daughter is one heck of a busy girl. I struggle to keep up with her schedule, her activities and all that she does. She is a child who is happiest when she is very busy, she thrives that way, but I’ve certainly dropped a few balls this year when it comes to all that she does. Between being in a highly accelerated program at school (holy homework batman), she dances, swims, sings in chorus, is in band, student government and just wrapped up a season with First Lego League. Some may think it’s too much, and for some kids, and I absolutely agree. But for her it works. Though for me, I admit, it’s a challenge.
Add in my hubby, our home, the pets and a painful shoulder injury this year (that I’m putting off fixing until our youngest is just a bit older), and my hands are so full that most days, I drop a few balls. Okay, a lot of balls. I look at how our life is different now from even a year ago. There is very little, if any, leisure time. If I’m not caring for the girls, I’m working. If my husband is not working, he is helping care for the girls or working around the house. We haven’t been out for even a dinner, without our kids, in over a year. Yep, over a year since my husband and I have left our house, together, without kids. I think I’ve gone out to eat with a friend, without kids, maybe twice. Aside from a few months when I had a weekly 7am physical therapy session for my shoulder injury, there is no me time. I’ve found myself arriving at a place where I feel guilty or lazy for doing anything that I don’t consider “productive”, be it caring for the girls, running the blog, helping extended family, caring for the house… Work, work, work. Go, go, go. Fall asleep, wake up, start over. I know it’s not a healthy place to be.
This special needs parenting thing is an interesting beast. You take no time for yourself, but you probably need it more than anything. Your friends start to disappear (and understandably so, I mean you can barely comb your hair most days, forget being a good friend to people you care about – I can never ever fault anyone for fading away. This year has not been one where I would claim that I’ve been a good, or even fun, friend to anyone), yet you need support in a way you never have. Though on the other side of the coin, sometimes amazing people come into your life and show support that just blows you away. Overall, my world has become very small this year. My house, my car, taking one daughter to school and dance, one to therapy, and hitting the grocery store in between. I am thankful for the world wide web and Love From The Oven – they keep me connected to the outside world!
And that is where I end 2012 at. Tired and needing to make changes. And that is what 2013 will be about. 2013 is also when I say goodbye to my 30′s and hello to my 40′s (ouch!). Everything about 2013 says it’s time for some new ways, some changes and some fresh starts. We are more understanding and accepting of the challenges we face with our daughter, and know that we need to take care of ourselves. We need to redefine our normal. I know I need to lower my expectations – my house isn’t spotless and too many meals come from the pizza parlor. It is what it is, and I would probably be better off accepting it than feeling guilty about it. I need to make time for myself and my husband and not know that it’s not selfish to take a break, but instead will benefit those around me.
These are the type of issues I’ve talked about on my other blog, Away From The Oven. With the hectic life I live, I find keeping two blogs going is a challenge and have decided that in the spirit of trying to make life easier in 2013, I will consolidate them, which means Love From The Oven will include some other topics including home, family, parenting, apraxia, crafts (um hello, glitter!) and random bits of life. It will still, above all, be a baking blog focusing on sweets, treats and eats.
But it will include more content, more things that are a huge part of me and my life. I’m fortunate to have readers come and visit this blog every day, and if I can do a little bit to bring more awareness to apraxia, then I feel like I should. I am an adoptive parent, and I know that adoption can be a hard road, and I am always willing to share my experience and discuss it with others.
From the first time I fired up the internet back in 96, I have always looked online for other people sharing their experiences and stories. No matter if I was buying new shoes or looking into a medical diagnosis, I’ve always wanted to find those first hand experiences. I feel that if I can give back to that sharing community and contribute myself, I should. I’ve always found writing therapeutic and a great way to process information, thoughts and emotions, so having a place to do that, and maybe even connect with others going through similar situations, is a wonderful thing to me. I think it also makes us more accountable when we put things in writing, and when working to create change, accountability is a helpful thing.
Now the good news is that if all you want to read are recipes, you can do just that. I will use Facebook and Twitter to share when new recipes are posted (like I do now) as well as pin all new recipe posts on Pinterest. I won’t be promoting the Away From The Oven posts in those spots where you go for sweets and treats. But if you want to read about other topics, like the little glimpses of life I share on Instagram, they will be here, just come by and check them out. I will also share those posts on the Away From The Oven Facebook Page.
I am excited to expand what I share with you. I love to craft and have a lot of fun and affordable DIY projects I’m planning around the house, and I’m excited to use this blog to share some of those. I’m organizationally challenged (putting it very mildly), and I’m hoping to work on that this year, and would love to share that with others who share that problem/goal. I love to whip up printables and share them, so look for more of those. We are in the process of closing in a covered patio and turning it into a playroom addition, ourselves (when I say ourselves, I of course mean I come up with grand plans than hand over to my hubby to carry out!). We are doing a mini makeover on our kitchen, and will be sharing that in January. I’m excited to do some of the things I love, like crafting, creating, organizing and decorating, and sharing them here on the site with you.
So 2013 will see a lot more recipes and decadent desserts, hopefully a few more savory recipes and more of what happens away from the oven. I thank all of you who share the love of sprinkles, cake pops and salted caramel with me, it makes me so happy to know that other people find joy in baking. And I look forward to sharing more with those of you who are interested in that side of life. I wish each and every one of you an absolutely amazing 2013, and lots of yummy sweetness in the year ahead.