The Lonely Home

Being a stay-at-home mom with a special needs child is lonely.
Before Georgia, I thought being a “homemaker” was the dream gig.  I envisioned myself driving around in my shiny SUV heading to yoga class, drinking Starbucks & listening to music, while my daughter sings along in the backseat.  I would still go out to see my friends, and Georgia would be one of those kids that people would marvel at and say how well behaved she was.
Well, as the stay-at-home mother of an 18 month old special needs toddler, I can state fully & completely that none of that has happened.
I almost never see anyone other than my kids or husband.  I’m sure it’s mostly my fault, because we don’t get out much, but it’s hard.  Georgia usually throws an awful tantrum whenever we are somewhere and I’m attempting to relax.  In those moments, it seems like every second is an hour and I am finding it impossible to get her to calm down. I usually wind up embarrassed because I’m “that mom” with the screaming baby, and want to escape.  I hate being that mom.  And who in their right mind wants to come over to my house and watch Moana and Mickey Mouse on repeat?  Not exactly everyone’s favorite hangout…
I mean to reach out more to my friends, I promise I do, but honestly, my brain is mush.  It’s drenched in stress and doctor’s appointments and medical waiver forms.  I can barely remember to brush my teeth most days, so asking me to remember to send a birthday card or even a text is a huge commitment from me.  I guess that makes me a bad friend.
I do have a few select friends that reach out every few weeks and check in on us, and I am so grateful for them.  They are the people I truly know are looking out for us, but most of my friends have kind of fallen off… I know part of it is my fault, and then I wonder if it’s because Georgia is so different, or if I’m so different, that we just aren’t compatible with those with “normal” lives anymore.  It’s not like I have much to share on a day to day basis besides excitement that my kid finally pooped or that we got an appointment at the feeding clinic we wanted.  I have nothing else to talk about besides her; she’s literally all I do.
Being here, all day, every day, except for appointments, just can feel so awful some days.  I talk to the dogs and Georgia, but on occasion I miss the days of drinks on patios and talking to girlfriends about the new shoes I bought.  And I don’t mean to sound like I wish I could go back, because I don’t.  I love this life I have now, for better or worse, but a moment of reprieve wouldn’t be unwelcome.  Even when I do get time “away,” I always feel that awful guilt of not being with Georgia.  What if she needs me?  What if something goes wrong?  What if all she wants is my presence, and my selfishness took that from her?
I imagine being a mom is hard for everyone.  I know being a stay-at-home parent is hard, even if your kid doesn’t have a life limiting diagnosis.  But when you add this other level of responsibility, you can feel like you’re drowning.
One day, probably about a year ago now, I remember telling my husband that I felt like I was sinking… that my boat was taking on water and I couldn’t bail it out fast enough to save myself.  He asked me why I hadn’t come to him sooner, and I said because bailing my water into his boat wouldn’t solve anything, and he said, “but I’m not sinking.”
And that’s why he is my best friend.  Because he keeps his boat afloat, even when I can’t, but I miss the fact that I used to have other people I could turn to when I was sinking.  I don’t know if I will ever be able to get back to that place again.  And like I said earlier, it’s not that I’m not happy with my life or that I would give up this journey for anything, but I guess I just need somewhere to vent, when friends are few and far between.
If you have a special needs parent in your life, don’t give up on them.  Show up.  Be present.  Find a way and grant them some grace.  I know it’s not fair and may be too much to ask, but I promise, that parent will appreciate it beyond words.airbrush_20180808102922


  • Marie

    I feel you completely. It’s hard. But just like your sinking boat comparison…You can’t pour from an empty cup. You need to have a few moments to yourself. Your husband sounds very supportive and would probably love to make sure you get a refresher every so often. It will in turn make you able to pour more love, patience, energy, etc. Hope you find a balance that helps you 🙂

  • Ashley

    Oh my goodness!! You words speak straight to my soul. I tell my husband all the time that I feel like I’m just drowning. Its wonder to have a supportive hubby. Missing the friends is the worst though. I’m so thankful now to have a small group of friends that I can count on to do life with and trust that they are praying and speaking life into my EG and not just being nosy about what we are going though. Thanks for your post!! Makes me feel like I’m not the only momma that feels this way!!

  • Stefanie

    “It’s not like I have much to share on a day to day basis besides excitement that my kid finally pooped or that we got an appointment at the feeding clinic we wanted. I have nothing else to talk about besides her; she’s literally all I do.”
    This is me everyday. Some days there is no poop even with laxatives and suppositories. No one can figure out why he won’t eat. The feeding team has been saviors to us. It’s crazy how stories can seem so similar yet each persons experience is so different. Ive read 2 of your blog posts and they make me feel… Human? Like when you forget there is a world outside your four walls and you walk outside to see people doing normal people things and not worrying about a medically needy child..

  • Mechelle Jordan

    My medically fragile daughter is 11.. ive is been home with her since day one. It gets easier, you occupied the time thats left in between care giving. Some days are still hard but no where near as it was when she was a baby.. I guess you just adjust to it. She is non verbal.. some days I don’t talk to anyone.. until my husband gets home.

  • Brea Hodge

    See you’re helping people. Stefanie she makes me feel human too. My son is 16 but I felt as if I was wrong feeling some of the things I did when he was little & I felt like nobody understood. But the way she puts all these feelings into words makes me see I was never wrong I am a special needs mom & I am only human.

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