I intended this post for Tuesday, but life happened, and life happened again on Tuesday when the schools let out early for weather. I had to vacate the room where my cloffice is so that Nathan could play Just Dance on the Wii and Sarah Kate could watch him (thank goodness she could watch him). I relocated to the kitchen table, where another distraction presented itself: Gabi, wanting to climb into my LAP. I get the distinct feeling that there’s Something trying to stop this post. But I’m pressing on, because I have some things I need to say.
We need to have a little heart-to-heart today.
When I started this blog nearly six years ago, it was all about me and processing my feelings about Nathan’s birth. I never intended to have readers outside my circle of friends and family, but somehow people found me, anyway. Eventually, I decided I needed to be intentional and consistent, so I became almost maddeningly so, following a set formula of what topics to write on and when to post them, making sure to stay within my “niche.” Many of you have told me that you made it a habit of checking in here on Tuesdays and Thursdays because you knew I’d have new posts up.
Over the last year, though, I’ve struggled, because things have changed.
Sarah Kate is older – a teenager now! – so it’s harder to write about her regularly. Swim meets and show choir performances are one thing, but the experience of middle school with a disability is quite a bit stickier. Comments are down – not just here, but across the blogosphere in general – and while I don’t have to have feedback to write, it is helpful to know that what I’m sharing is helpful or entertaining or otherwise positive in some way to my readers. The survey I did last year suggested that I shouldn’t post about “issues” as much, so I haven’t – and to be honest, I was happy to give it up because I didn’t want to blog about the R-word and prenatal blood tests and inappropriate use of handicap spaces and other things that are important to the disability community but don’t get a lot of traction elsewhere and, frankly, make me tired.
For several months now, I’ve felt stunted and unsure – even my photography has taken a hit. It didn’t seem like I was being authentic most of the time. I’ve posted some sorta-kinda deep thoughts, but mostly it feels like it’s been the kids did this or that with some humor thrown in (particularly in the case of T-ball). Nothing is wrong with humor, but I can’t do comedy all the time. For awhile I simply didn’t know where to go.
But there are a few things I do know.
I don’t want to just be The Face of Disability. On some level, there’s no getting around it, because it influences everything our family does. I park in the handicap space to pick Sarah Kate up at school, and I still have to put a pull-up on Nathan in the mornings. We say “use your words” to force him to ask for a cup of milk instead of just pointing to the fridge and saying milk, and Sarah Kate uses a rolling purple and green striped backpack, the only one in the school because everyone else has a system-issued black one. All these things are part of their disabilities, but they are just things that we do in the same way other people pull through the regular car line or tell their kindergartener to get dressed. We don’t think about it. For us, it just feels ordinary.
I want to share more about my interests and what does and doesn’t work for me. The problem with having a blog written by a mom that’s focused on special needs is that it gives the impression that’s all there is to my life. Nothing could be further from the truth. I enjoy photography, which you probably know if you’ve been here awhile. I’m an avid (and fast!) reader, which you may not. I’m brand new to bullet journaling but I think it may be life-changing. I find Stitch Fix to be both a lifesaver and a source of amusement. I fear that Amazon may take over the world but I don’t care because I love Prime so much. It’s time I talked about what it’s like to be a special needs mom – and it’s not all about special needs.
I want to share more about our faith. That’s a topic I shied away from for a long time, in part because although the kids and I were Catholic, Mr. Andi wasn’t. Since he was received into the church at the Easter Vigil last year, though, things have changed and I want to share that aspect of our life with the world.
My focus here will remain on our lives, but it probably won’t look the same. My next two planned posts are about selective dorsal rhizotomy (it’s been ten years since Sarah Kate had hers done) and Lent; the common thread between them will be life – as WE know it. Authentically. Beyond that, I don’t know where things will go, but I do hope you’ll stick around to see. If you don’t, that’s okay. Even good friends grow apart sometimes.
I love that you will be more authentic. I too am raising two kids with differing needs ( food allergies/ asthma and Down syndrome ) but we don’t live a special needs life. We live a life and our needs are woven into that life. Please be truthful to yourself and your writing will reflect that!
So well stated. Whether or not you have a loved one with a diagnosis they have needs that are unique to them, some more some less. Welcome to life, especially life as a parent.
I am looking forward to your post about SDR. My son was referred to have an evaluation for the surgery, and I am very interested in how people are doing after the surgery (particularly long-term). Thanks for all that you do on this blog.
Have you seen the post I did a couple of years ago about SDR? It answered a lot of the questions that people frequently ask about our experience with it. If not, you can find it here: http://wp.me/p1yHoW-36l
I’m working on the new post now – it will be a little less detail oriented than the previous post and a little more about how we feel about it ten years out.
Hi Andi, I’m one of those readers who “found you.” A friend of a friend. By profession, I’m a school speech-language pathologist so I naturally have an interest in children with all kinds of needs. But really what has kept me checking in all along has been your voice. You could write about any topic, deep or surface-skimming, and I’d be interested. Your blogging style is heartfelt and humorous. Thought-provoking and relatable. THAT is what brings me back. Whatever direction you choose to go, however frequently you choose to post, I’m happy to follow along. Thanks for sharing with all of us!
Thank you so much! I wrote those descriptors (heartfelt, humorous, thought-provoking, relatable) in my writing journal earlier as a reminder for myself. I don’t always think I AM those things, but I TRY to be them.
I think it’s so important that you feel authentic.
I don’t remember exactly how I found your blog, but I’ve followed because I have a younger child with CP and you have one of the few blogs I’ve found that has a wealth of information about a young child growing up with CP, especially since my kid is relatively similarly functioning. I will keep following (and definitely want to read your thoughts on SDR in hindsight), but completely understand and respect the need for additional privacy now that the disability issues are…these aren’t the right words really but somehow, more personal.
I love your new plan/approach. Just keep telling your stories – wherever you are lead to tell them and on any topic you are lead to share.
You do you mama! I’m another random person that found you and look up to you as a mom of older kids with special needs, since my son is just 2. I’ll stick around to learn more about you as a person:)
Phew! I thought you were going to say that you’re closing down all together. I look forward to your posts. I wish I had the self-discipline to keep a blog going. I went back to read some of my old posts last night and I miss it. (I only ever had a really really really limited audience.)
Ha! I was afraid it might sound that way, and believe me…I considered it. If you feel the need to write, do it. The size of the audience doesn’t matter.
I appreciate your writing so much! I found your blog when looking for info on SDR,Mobutu have stayed because of your awesome writing and authentic voice. My CP kiddos has cognitive delays similar to Nathan’s, so Inappreciate your posts on the challenges of developmental disabilities. I have an older child with Asperger’s and so Inappreciate your posts on life with disability during the middle school years too. And lastly, I appreciate your uniqueness – so please keep blogging! It’s especially challenging to have two children with disabilities today… So just knowing I am not alone in this is so helpful!
Jenna
Momma to 6
Dad would be so happy to hear you want to share your faith! Keep up the great work Andi!
I think of him, often, Kerin – odd since I only ever had a single one-on-one conversation with him, but not odd when you know how important it was in that moment.
I love your post but I get it. I am struggling with the same thing with my blog. Finding the balance between what to post on and what to keep private. I’ve loved reading your post for the last 4 years!!
I love whatever you write, Andi! 🙂 Keep it coming!
Andi I read this to keep Up with you. You know I like have the conversation with you whether I agree or not. You make me think. You always challenged me. I like that. I have challenges in being a dad of twins, you have challenges in being a mom of Special needs. They are not the same but they are life no the less. I have got to keep up with Sarah Kate and Nathan. You have shared your life and We are the better for it. I know you and know some of your hobbies, and I know Mr Andi and some of his. I laughed when you talked about the people he worked with haveing never dealt with Ice so they all looked at him. The make me feel included in your life even though I am hours away. You do have a struggle with SK in respecting her privacy and I think you have done an admirable job. You zoom around with this function and that. Share what you want to share. I appreciate it. You know me, I want to know everything, and I will decide what I don’t need to know. So you write about you the runner, you the photog, you the Catholic, You the crusader, write about you
I have read your posts for years. I greatly appreciate your sharing and love the idea of posting more about your Catholic faith.
Out of pure curiosity, what is Sarah Kate’s MBTI? 16personalities is a good site for finding out. Middle school with a disability is a rough time. For me, my main problem is clique-y girls and the whole convoluted social thing. The intersection of disability and temperament is my main blog topic.
She had never tested before, so I had her do it this afternoon – INFP!
In the nearly 24 hours since I put this post up, I just want to say how much I appreciate all of the comments you left above – even if I didn’t respond to you directly, please know that it means a lot to me that you read and commented. Now let’s go forward together!
Looking forward to reading your next post – especially the Lent part!
Authenticity is a beautiful thing! For the record, though, I have always enjoyed reading your blog no matter what you choose to write about…
I have always enjoyed reading your blog and seeing your pictures. I love bloggers but so many have disappeared over the years. Al your topics are interesting to read whether they relate to me or not. I am sticking around.
I originally found your blog when we received a prenatal diagnosis of Down syndrome for my daughter. A little over 2 years later and Down syndrome has become much less important. I still read because I enjoy your posts!!
Andi, I’m glad you’re going to continue writing. I, too, was thinking you were about to tell us that you were saying, ‘good-bye’. Glad that’s not the case.
You have given me much courage, and encouragement, over these years. It’s easy to kinda ‘implode’ when I look and (however unintentionally) get tunnel-vision, sometimes seeing only the situations we deal with.
You’ve been a bright reminder that there is also joy beyond a ‘different ability’ that can easily feel more like isolation. You’ve been candid, and you’ve written words that sound a lot like what bounces around in my mind, when I thought I was ‘the only one who felt that way’.
God’s blessings to you, always, and as you go forward in your writing. It’s a gift to me and to others, that you allow us into your days and discoveries.
Thanks for staying around! We appreciate you, and your encouragement. I would wish that we could be the same for you.
God continue to bless you all, Andi <3
I’m a random person who found this blog a few years ago. I really just enjoyed your voice. A few days after my son was born, we found out he’d had a stroke before birth, which can frequently be a cause of CP. He’s still so little that we have no idea what kind or if he will have any special needs. I’ve been rereading old posts and your book to help me not worry as much. I love your frankness and the realness of it all. I’m so glad you’re going to continue blogging in a way that continues to be real. Thank you.