Now we know.

It’s been a rough stretch. Sweet little Poppy was ill for the entire month of March. Her nose started running one morning, and kept running for nearly three weeks. As soon as her congestion cleared, the stomach virus hit.

Adding insult to injury – my already overwhelming sense of helplessness was multiplied when poppy started vomiting. She was so scared and confused. Her tiny body was heaving, she was choking and gagging, it was coming out of her nose and burning. The worst part was that she kept trying to swallow it all. Instinct.

A month of little sleep, followed by even less sleep, and littered with financial and medical appointments and paperwork and phone calls and emails – almost enough to break ones spirit. But it didn’t.

What did break my spirit – was when I , too, got the stomach virus. There was an 8 hour period of time where I had honestly given up. The primal spirit mother in me took over (thank god) and cared for a sick and feverish Poppy – while my body writhed like never before. For a time I had to lean over a garbage can in the corner of my room while holding Poppy over a towel in one arm. I think that was the moment that broke me. Suddenly, nothing in the world seemed fair, hopeful, worthwhile. I wanted my mommy SO BADLY.

Luckily for me… the next morning she came to my rescue in full hazmat garb. Masks and gloves and gallons of disinfectant. She is truly my best friend and saving grace. Thank you, mama. Thank you for all that you do, all that you are, all that you sacrifice to keep raising your grown-up baby.

I’ve been struggling with some pretty severe anxiety. I’ve had to pull over a handful of times, had to slink down to the cool floor for a moment of reprieve, had to shut a few doors a little too loud to let some steam out. I hate feeling so imprisoned. The weight of scheduling appointments and connecting one million dots to get surgeries on the books and funded and prepared for is hefty. Husky. Huge. A mammoth at my heels looking for a soul to squish.

I am so thankful that I have made connections with other mamas through Facebook. I cannot express what it does for my spirit and sanity to see my newsfeed full of beautiful baby faces that look just like my little Poppy. But sometimes – it is so very hard. It is hard not to compare “severity” and development. It is hard to see tiny babes with IV’s and tubes and trachs and g-buttons and casts and halos and scars and stitches and swollen-shut-eyes and distractors and … and reconstructed skulls. It is hard. It is hard because I love them all. When one of these children is ill or having a surgery (and there will always be one at any given time), my heart aches extra. I dream of watching all of our kids running around a park, playing together. But their lives are not typical, their bodies are not typical.

I cannot speak for other parents, and oftentimes I fear I may misrepresent the “big picture” of raising a child with special needs. I speak only from my own experiences. My own feelings. From the corner of a dark room after the longest, hardest day.

It sucks.

Of course there is laughter. There is overflowing love. Play. Outdoor adventures. Splashing in pools, stomping in puddles, feeding chickens, finding belly buttons, blowing kisses, giving pats, and sweet, shy shoulder hugs. Of course I would not ever choose to give it all back. But I would choose typical. I would choose health. For her, for my sweet, quiet boy who is watching his once “punk rock” mom deteriorate, and for myself.

I write about the bad days because I need to acknowledge the mountains I move one pebble at a time. I need a pat on the back at the end of the day from someone who knows exactly how excruciating it can be – and as it turns out I’m the only one capable of that.

I NEVER imagined this life. Two years ago I was working a job I adored with people I loved, making great money, and attempting to create another little life through IUI (intra uterine insemination) with a donor. Single-motherhood was the bumpy road I CHOSE to travel. I absolutely enjoyed every aspect of parenting on my own. Hey, it was easy. Cake. A walk in the park…

I chuckle now. A slightly painful chuckle – a hard pill to swallow, perhaps. I can’t do this alone anymore.

Now I am married to doctors and specialists and state service workers and friends and family and strangers who donate money to help keep the ends meeting.

I mourn my privacy. I miss my secret world. Just my blonde baby and I against the whole world – not a worry in sight.

We are a different species now. Evolution has given us wings and gills and super-strength. But it has also robbed us of our innocence and naïveté. Now we know better, because we also recognize worse.

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10 thoughts on “Now we know.

  1. It is the moving of these mountains that will show our children just how strong we are…. Though I agree with you…. It’s hard, it hurts….. I’m a mama, I’m supposed to make the pain and booboos go away…. Supposed to sprinkle fairy dust and make the monster under the bed disappear…. Except this monster won’t leave, this monster is a living breathing entity that is trying to rob me of the simple joys of motherhood …. And I admit, there are times he wins…. There are times when despair is so overwhelming I can taste it. I hate knowing that my sons normal every day life is some people’s nightmares…. But this is our normal…. This is our life…. I know it’s a hard road, but you are not alone, you are among the sisterhood of special needs mommies…. A group we wish didn’t exist, but a group to find strength … Love …and at times a willing ear to listen to us rant and rage…. My arms and heart are always open to you sweet friend….

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  2. I really want to thank you for sharing all of this. i think its important not just for others going through similar experiences, but for those of us who have no idea what it is like. You foregoing your privacy to offer that up to us I find incredibly admirable. Thank you.

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  3. Here is your pat on the back momma. You are doing an amazing job and you WILL get through even the darkest hours. I get it. I’ve been there. And even still occasionally slip allowing the anxiety I felt in the early years to overcome me for very different reasons now. There will always be reasons. But there will always be better days that make it all worthwhile. Keep the faith. 🙂

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  4. You’re amazing. I see you – I see you in all of this, hear you, and love your momma’s heart. Thank you for sharing. The world is more beautiful because you and your lovelies are in it. Thoughts, prayers, and love from California.

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  5. Thinking of you. Praying for you. Yes, feeling your pain. You are doing the right things, you are doing it all without giving up. I am proud of you and want to send encouragement with all that is in me. BIG HUGS

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  6. Patting you on the back and giving you a great big giant hug and a reminder, as Taryn said, that there will be days that are really, really hard, but you’re doing this, you can keep doing this. Thanks for sharing your heart.

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  7. I recently found out about your family from the portrait fundraiser at Alma, which I’ll be doing this weekend. Since last week I’ve read all of your posts from start to finish and am so deeply touched. My heart breaks for all that you’ve been through. I can only imagine how tough it is to navigate your way through the darkest of hours. I’m sending a huge virtual hug to you. You’re a superhero (although you may wish that you didn’t have to be all the time)! You have inspired some very big changes in me as a person and as a mother and for that, I thank you. Your family is in my thoughts and prayers daily. I’ll continue to spread the word, will donate all that I can, and watch for new posts and pics. Thank you for sharing so openly. Poppy is amazing!!! Peace to you, to Kieran, and to Poppy.

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