the new normal


We sure can get sloppy about living our comfortable lives, can’t we? I feel like I’ve crossed over an invisible threshold into some kind of exclusive hard knocks club. It’s a little like when Neo discovered the Matrix, only instead of a machine-made digital infrastructure, I now know that life can sucker punch you so hard it’s impossible not to expect another blow at any moment.

I delight in so much goodness all the time. Right this moment, I can hear my husband headphone singing along to The Decemberists, the house is otherwise quiet and warm and cozy. The kids are creatively occupied, the baby sleeping his snuffly newborn baby sleep. It’s just an easy-going snapshot of any Saturday night. I do not overlook the good stuff, and there is a lot of good stuff.

So don’t think I am complaining. Don’t make the mistake of assuming I have lost sight of gratitude and gladness. But considering that it’s always a transition to adjust to life with a new baby, how much do you suppose we’re adjusting now? I don’t want anyone who has never experienced something like this to tell me that I’m doing it wrong.  Because, the thing is, we aren’t getting back to normal here. It’s not a matter of soldiering through sleep deprivation and hormonal fluxation and then, clap hands, it’s same old, same old. No, we’re suddenly playing a brand new game with a whole new set of rules. I’m doing the best I can.

I predict that we will find some familiarity in this new normal at some point. I guess I won’t always feel like an imposter in doctor offices, like a faker for walking around town as if everything’s peachy. Three and a half weeks into this (“this” being the actual, important LIFE of a PERSON, not a finite trial to get through) and I certainly don’t feel familiar with any of it yet.

There’s a part of me, the visceral mama part, the fiercest and feelingest something inside of me, that wants to spirit my little family to someplace safe and far away. I want to forget everything I’ve learned lately and pretend that I can just love my baby better. I want to keep anyone from ever cutting my tiny boy open or apart. I want to preserve every bit of him and protect him from hurting. It’s very hard to be in the world when your brain keeps shouting GO! RUN! Take him away from all these people who will never understand!

I know I won’t always feel so wrung-out and raw. But even as we grow more accustomed to this sweet boy and all of his challenges, I won’t ever have the luxury again of not seeing how ridiculously fragile we all are. It’s amazing that any of us are here, really.

Categories: Uncategorized | 7 Comments

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7 thoughts on “the new normal

  1. Underneath your uncertainty and fear, your fierceness and love for your boy shine brightly. How lucky he is to have you on his side. None of us could ever presume that you are doing it wrong. I think we all stand in awe of your strength in the face of the unimaginable. Even when you don’t feel strong, you are. We all see it.

  2. Deb @ Green V-Neck

    I can’t imagine a better mama to that sweet baby boy than you, or a better family, though I honestly wish it weren’t you and your family having to go through this. Keep on writing, let it out. XO.

  3. Who is to say what is wrong or right? It is only how it is. You will just do what you need to. No one is a judge here. There is no court. However, there is a strong group – here when you need them. Ready to listen. Willing to help. Full of support. There is no normal. There is just – there. And you have many people “there”. So does he.

  4. I’m glad you’re writing. It is always easier for me, but I can’t imagine how much more so now, for you, especially when you need to get out the more raw thoughts and emotions. I know that we can’t know and can barely even imagine what it is really like for all of you, and sometimes I feel like we can barely emphathize well, it is so hard to just listen and be there and not say something stupid in the face of it; but I hope you know that even if that happens we don’t mean anything but “we love all of you”. And I agree with Deb…I have always thought of you guys as some of the best parents around, and I still think that now.

  5. Lisa N.

    You are such a beautiful writer, April! You should definitely keep writing. It can be very cathartic, and help keep the flooding of thoughts to something more organized and manageable. I understand your feelings of wanting to keep your baby safe from the doctors. Even at probably 1/100 of the severity, I also feel like I always have to stay diligent to saying no to the things doctors “recommend”, especially when my girls were infants and young children. I always felt like I was having to buck the system when we had to go to the doctor for anything. I did find a regular pediatrician who didn’t argue with me everytime I refused what was “recommended” or I wanted more information until less patient doctors were rolling their eyes at me wanting me to just do what they told me to do. Keep at it, you’re doing a great job!

  6. So I know I already wrote you an email, so forgive me, but as I’ve been thinking about your story today I’ve been struck by a few things. First, my post on limbdifferences was probably not in the right tone. The way in which you found out about your son and the fact that it was not that long ago…well I shouldn’t have been so chipper. We found out at our 20 week appt. so we had a lot of time to emotionally and mentally prepare before the birth and now our daughter is almost 18 months old. So I’m sorry about that. And even right now as I’m writing this it still strikes me as crazy that I can relate to your story…like “I can’t believe this happened to us, to our daughter.”

    Second, you’re a fantastic writer. This will be a great outlet for you as well as an eye-opening, educational place for others to learn. I don’t know what you’re plans are for this blog, but I hope you keep writing.

    And can I just give my two cents about Dr’s and the “rare” child? Follow your gut and don’t give in when you feel strongly about something and when it comes down to it YOU are in charge. Not the nurses, not the Dr’s. Of course they are wonderful and educated and a gift, but if it doesn’t feel right, or if you’re not getting the answer your looking for (especially if you’re confused) keep pushing and keep asking. In the end I was the one who found our daughter’s diagnosis and I was the one who felt something was “off” about her stomach…only to be later confirmed by the professionals. You’ll need them and you’ll want them to be on your side, but as the mom you have the final say and you’ll have to exercise that right and be assertive often.

    Lastly, not that you need my permission, but be easy on yourself. Of course you have much to be thankful for, but this is a daunting new life you did not exactly sign up for. It’s ok to grieve, complain, feel sad, etc.

    Hugs to you.

    • I sure do value your comment/feedback. It’s helpful to hear from someone who is already on this road. I am finding it beneficial to write, though I’m conflicted some about how much to write, which details to publish. And as understandably all-consuming as this is for me right now, it’s not the sum of our life. I particularly admire the beautiful way you’ve woven your daughter’s story into your blog.

      It is a daunting new life. I never knew the phrase “limb differences” until just a few weeks ago! Crazy how quickly things can change. . .

      thanks miggy!

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