I will love you, again


Living with a child with special needs is a multi-layered stressor. You have the exhaustion of day-to-day struggles, meltdowns, and frustrations. Then, you have the non-stop emotional baggage that you carry everywhere, and I mean everywhere, with you. You also have to deal with the crappy responses from others, and the awkward social situations you find yourself in (like in a library baby group with the moms all gasping and staring as your 15 month old child beats up on an 8 month old). You also have guilt about everything – the what if’s, and what else’s. You try to learn to compartmentalize this guilt, but it has a nasty way of creeping back inside your head when you least expect it. You worry about things you never thought you’d worry about, like whether or not your child will ever have friends.

You also find yourself falling away from your other relationships – you forget to ask your friends about the important things in their life, and you find it hard to talk about anything other than your child with your partner. Some days you feel overwhelmed and consumed by stress, and have to drag your exhausted body out of bed against every other grain in your body.

We are trying to tackle these one at a time. Most recently, Eric and I have been putting in considerable effort to nurture our relationship. My sister advised that we re-frame what the term “date” means. She suggested we start a game of Scrabble and play two letters a night. But, realistically, we often find ourselves in bed at 8 or 9pm with a messy house, dirty dishes, unwashed laundry, and little energy. If we’re lucky we have prepared food for Maddy to bring to daycare with her the next day, but most likely we’re in bed knowing that we have to wake the next day early enough to get her food prepped.

One of our more recent successes we’ve had with focusing on our relationship was pretty easy to fit into our chaotic life. We wanted to force ourselves to not talk about the challenges we’re having as a family. It’s damn hard. Our family challenges consume both of us, and we can sit and have the same conversation a hundred times and still feel like we need to have it again. I can have a good cry and the next night need that same release as if it has been too long.

It’s so hard to not talk about our challenges that we have to force ourselves into another topic. One way we do this is by taking turns saying what we love about the other. We go on, and on, and on, until we’re saying silly things like, “I love when you buy me chips,” or “I love your face.” But you know what? It works. It forces us to focus on something other than Maddy, SPD, or PDD. We’re not brainstorming ways in which we can get her to eat, or sleep, or play… or even smile and laugh. We’re thinking about us, and why we’re happy we found each other, and why we got married. I promise it works – just try it.

We know that nurturing our relationship not only benefits us but that it also benefits Maddy, and we’d do anything for that little girl. In what ways do you and your partner re-connect during tough times?


12 responses »

  1. This is a beautiful post framed around a beautiful quote. I’m not even a parent but I am so moved by your courage, insight and your willingness to step back from the stress, breathe, and remember what really matters. Please know you and your beautiful family are in my prayers. ❤

  2. I’m in disbelief that Eric wrote on your blog!

    And I think Ash means she loves how you have money she can sneak outta your pockets. 😉

    One day at a time and it will become easier to cope! I know the focus is on nurturing your relationship but I’m curious – What do you guys love about Maddy? I love how she reaches her arms out to be held. I love how excited she gets to see dogs. I love her cute smiles, her big eyes, and her ponytails. I love how she’s a chunky monkey. I love how she played Steve’s game with him – and how she let him hold her! I love how the streets by your house can soothe her.

    What does everyone else love about Maddy?

    • Haha, Captain Cool (how he refers to himself when he talks to Maddy) also commented on the last one 😉

      I love how much our family and friends love Maddy, just like she was their own. Thank you for sharing!

      I love how Maddy giggles when Loki is running around excited and barking. I love how she has no fear and gets right in there to play with Loki when he’s playing with another dog, and the giggling intensifies. I love when she rubs her hands on her tummy and says, “tickle, tickle, tickle.” I love that she calls everything and everyone, “puppy!” I love how peaceful she looks when she’s sleeping, and I love when she sleeps with her bum in the air. I love that her fine motor skills are her thing and wonder what she’ll do with them one day (art? music?). I love that she’s perfect and ours 🙂

      • I wondered who Captain Cool was!

        I love Maddy’s voice and facial expression when she says puppy too!

        I also love when she signs “more” and gives her I don’t know shrug.

  3. I know someone who has a rule about how much they can vent after work.

    If work is positive for you both, what about taking time to talk about it? Or talk about the positive parts of your day, including Miss Maddy?

  4. I like what you and Eric are doing – I think its so important to take whatever time out for the two of you that is possible. I recently read the ‘happiness advantage’ and it has a similar strategy that I like – Every day, list out 3 good things about the day. Doesn’t matter how big or how small. Share them to your partner before bed and count the small bits of happiness in your day. Looking at the positive side of things really helps you cope with the other stuff. Also, and I know you already know this – but your social support system is also a key coping strategy. So to ensure you keep your relationships strong, maybe when you’re around friends maybe try making it all about them for a visit/phone call etc – similar to what you’re doing with Eric – this will not only let you celebrate their joys but allow you to mutually benefit from a strengthened friendship. On the flip side where sadness is concerned – maybe you could also try actually putting a time limit on venting your frustrations (e.g. five minutes of unlimited yelling, crying, etc) – get it all out and allow your self to move on – at least for that day.. I’m slowly learning that being happy can take as much energy as not being happy but at the end of the day when you’re happy it can quickly snowball into more happiness and pay dividends on your quality of life.

  5. Pingback: These are a few of my favourite things « sewrite

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