**Joining in Just Write today…because that’s the only way I can get it out.**
For 12 years now, I’ve had moments where I’ve felt horrible. Like the worst person in the whole world and especially the worst mother. Because I have days, sometimes multiple days, where I am positive that I am not capable of being Olivia’s mother. I can’t change one more diaper, I can’t clean up one more mess, I can’t entertain her through one more 2-hour doctor’s appointment, I can’t get her dressed one more time. I just can’t. And the thought runs through my head that not only do I have to do it today, I have to do it forever. And if today feels this terrible, how on earth will I do this forever?
And that, my friends, is reality. There are days when I can’t stand being her mother. Because it’s impossible. Because it’s too much. Because it’s so hellishly lonely sometimes I feel like I can’t breathe. And then that makes me feel like double shit. Because I love her more than anything in this world. I adore her. I would move heaven and earth for her. So why do I feel this way? Shouldn’t I be sitting around cherishing every word she says, every move she makes, every milestone she reaches because it’s all a miracle? And around and around I go. I love her, I worship her, I can’t stand her, I can’t do this, I give up. It’s a terrible circle to be in.
And then one day, as I’m reading Brene Brown’s words, I come across this statement she made about “Caregivers’ Shame”: We’re not monsters and we feel like this because we are human beings trying to manage a major life event with very little of the support and resources typically offered to people in crisis.
And even though she was talking about taking care of ill or aging parents, it slaps me in the face with the truth of it. With Olivia, I don’t get to be JUST her mother. I am also her caregiver. And that’s why I feel this way. Day in and day out for 12 years, I’ve been not only her mother, but her caregiver. Without fail. Without much help. Without many breaks. And all this time I’ve felt terrible for feeling this way about being her mother, when, in fact, I’ve been feeling this way about being a 24/7 caregiver. It makes so much sense.
It doesn’t change the fact that I had the shittiest day I’ve had in a while yesterday. That I barely made it through a 2-hour eye doctor appointment with my sanity in check. That I definitely grabbed Olivia by the arm and spoke to her through clenched teeth and the receptionist saw and gave me a hateful look. And that look made me want to scream at the top of my lungs that I’m a good mother, doing my absolute best, and I love this child more than anything in the world but I just had to change a diaper of a 12-year-old in a public restroom, had to keep her from licking the walls because she decided that’s what she would do today to drive me nuts, try to get her to cooperate with the eye exam, keep her entertained for 30 minutes while her eyes dilated, keep her from picking her nose and sucking her hands and inappropriately kissing the eye tech and answering her endless questions of when we get to leave. And now, we’re almost done, and I’m told she needs new glasses, which insurance won’t cover, and she’s crawling down the hall while I’m trying to pay our copay and schedule our next appointment and I just want to get the hell out of here, so I grabbed her by the arm and told her to sit through clenched teeth because that’s all I have. I have no discipline method that works with this child, and this probably won’t work either, but I’ve got to try. Because I’m going to lose it in front of all these people in 5 minutes if I don’t get the hell out. I am going to crumple to the floor in the fetal position and bawl my eyes out in front of these strangers and my daughter. And you know what my next thought is? I get to do it all over again tomorrow.
And that’s when I have to remind myself that it’s normal to not enjoy this day in and day out. Who would? That it’s normal to feel exhausted and spent and at the end of my rope. Because even though I wouldn’t trade her for anything in the whole world, being her mother and caregiver is a tough job. Very tough. Especially 12 years in when everyone’s gotten over the shock and awe and has kind of forgotten about this monumental task you’ve been given. And because I love her and adore her, I don’t ask for the help I need, or even take it when it’s offered. Because I don’t want you to see me as weak. I don’t want you to think that I don’t love her. I don’t want you to think that I don’t want to be her mother. I don’t want you to see my tattered superhero cape. Everyone always says “I don’t know how you do it” and most of the time I want to answer “I don’t either”. But instead I just smile and say “You would do the same for your child, too” because you would. But it sure as hell doesn’t mean that it’s not difficult. Every day.
I was afraid to write this post because sometimes the ugly truth can bring on some ugly comments. But I decided that it was more important to put it out there because if it makes one person feel less alone, I will be happy with that. Sometimes the truth is ugly, right?
Elastamom's Excerpts 
You ARE a super hero. And, it IS hard!! I’m sure. I can’t imagine. My girls will grow up, and do most of these things for themselves, like your boys do. But, Olivia will always be a Herculean task for you. I admire your honesty. And, I want you to know that your love for her is very apparent.
Thank you for the last line. I needed that!
Your cape might be tattered, but it’s secretly made of steel.
Thanks, Kitch. 🙂
This comment rocked, Kitch. And, Tiffany, I second what Kitch said.
Thanks, Rudri. 🙂 Have a great day!!Tiffanywww.elastamom.com
Tiffany.
Once again you’ve spoken MY heart and mind, and told quiet, dark things that I didn’t even know I felt. For this I thank you. The permission to be human is liberating. Acknowledging that I don’t have to be Mary Poppins and June Cleaver rolled into one every. stinking. day. is comforting. Admitting that my life is relentless, exhausting, frustrating, and, frightening, DESPITE its inherent joys and the tremendous sense of joy, pride, and accomplishment I feel in caring for Julia is cathartic.
You have described a “typical” day for me. The licking the walls. The crawling on the floor in a public place. The diapers. The endless questions. The finality of forever…and then what? Who will love her as I do?
Your posts have brought me to tears many, many times. I have carried them with me many, many days to remind myself that I am NOT alone…that somewhere in Ohio there is a fabulous, amazing, dedicated mom named Tiffany who is living my reality. I appreciate your courage and your candor more than I can express.
You spoke right to my heart…thank you.
You are a beautiful real mom. If any parent faults you for feeling this way, then they aren’t being honest. I want to quit sometimes and I just have teenagers…who don’t have any special needs. When I think about how I feel sometimes and then read your blog about what caring for Olivia looks like, I can’t imagine anyone being critical of how you feel. You are a superhero…even on your worst day.
I’m definitely not a superhero. But it’s good to know that this happens to everyone. 🙂
So, so familiar! This was me, too, just last week. Licking the glass door and in danger of bolting while I was scheduling the followup appt. Sometimes I’m constantly on the verge of a panic attack.
“shock and awe” – hahaha
Soul sisters, Kate! 🙂
We always do our best, and it is important to recognize and accept that our best is going to be different every day – every moment of every day. There is no standard to hold yourself to other than to ask yourself the question “am I doing my best in this moment?” And it sounds as if you are. Absolutely. Here is a big squeezy cyber hug from me to you (((HUGS))).
Thank you, Nita! So true!
Again, I will tell you that you are THE BEST MOTHER that I know 🙂 It’s totally fine that you feel that way— it’s normal— it wouldn’t be right if you didn’t feel that way 🙂 I feel that way all the time with my 3. Hugs to you and you really are the best mother ever!
I appreciate that, Nicole! 🙂
Your love for Olivia and your boys shines through every post. I have to tell you that I have these days with my three and they don’t have special needs. But some days staying home and being constantly “on” I feel DONE. I always love them but some days, when my three year old is whining or my six year old is throwing a crazy fit for no apparent reason or my eight year old is being moody I don’t particularly like being their parent. You can’t always “cherish every moment” of parenthood..some moments suck 🙂 and those two hour eye dr appointments when they have to be dilated are horrid.
Yes, totally, Erin, motherhood just isn’t bearable sometimes!!!
Being a mom is hard. Being a caregiver is near impossible. You’re doing both! One of the best things my old therapist ever said to be was “how would you feel about someone in your situation if you were on the outside looking in?” and then, “why can’t you give yourself the grace and compassion you would give others?”
It really made me think. Why was I so hard on myself when I would never in a million years be that hard on another person?
You are doing great, and anyone who knows you or your children can see that in an instant. But no one expects you to be perfect, or even close! Your best is 100% good enough.
Thanks for sharing with us 🙂
That is such great advice, Mo. I agree. I would never judge others the way I judge myself. Self-compassion is definitely a practice…and I’m getting better! Have a great day!!Tiffanywww.elastamom.com
TIffany. You are the best mom in the world. I have told you numerous times how much I look up to you. I wish I had half your patience, courage, strength & heart. There are days I wish I was your child ;o) You own everything you do. The good, the bad & the ugly. But mostly the good :o) I am sorry yesterday was rough. I hope today was better. And tomorrow too! You are definitely a superhero to me and so many others. Even on the days you don’t feel like you are. Hang int there & keep sharing. You make such a difference to so many of us moms!
Thanks, Cyd!!! xoxoxo Have a great day!!Tiffanywww.elastamom.com
That was a wonderful heartfelt letter Tiffany …..I wish I could reach my daughter who is in a similar situation, but will not reach out for help, even to her mother, she puts on a brave front so her family will not worry about her, but she is dying inside.
I hope your heartfelt letter will allow her to open up to us so we can help….
I hope so too, Beth! Have a great day!!Tiffanywww.elastamom.com
I want to punch the lady who glared at you in the doctor’s office. Such a good reminder to not judge strangers based on one interaction! I needed that reminder today. PS You are a superhero, you are Olivia’s superhero. It gives me chills to think of what her life might be like if she was born with a different mom.
Thanks, Jamie! I kind of wanted to punch her too…but I remind myself that she doesn’t know my story. And I’m really glad I was chosen to be Olivia’s Mom too! Have a great day!!Tiffanywww.elastamom.com
It’s funny, I was just introduced to Brene Brown the other day, and now you’ve mentioned her. She has such good stuff to say, doesn’t she? It doesn’t help much in the throes of a parental meltdown (which I have ALL the time without the added stressor of being a caregiver that you write so eloquently about), but it sure is calming after the fact. We do our best. Then we get up and do it again. YOU do your best, and everyone can see it, even that crazy receptionist.
Thanks, Stacia! Brene speaks to my heart. 🙂 Have a great day!!Tiffanywww.elastamom.com
I love your blog! You are honest and warm and give a voice to all that noise that we as woman having going on in our heads sometimes. Please don’t ever let the haters ever keep you from speaking your truth. You have the courage to write what a lot of other mothers special needs or not are thinking sometimes and I thank you for that!
Thank you for your comment today, Maureen! I need to remember that when I’m writing “scary” posts. Have a great day!!Tiffanywww.elastamom.com
Saw a link to you on FB- no special needs kid here and I still feel that way some days. Parenthood is damn hard. I just don’t know how some people can do it alone. I can barely do it with a helpful partner. There are days when I whisper “sorry” to them while they sleep because I lost my shit and I yelled, or I grabbed their arm, or I wished they were somewhere else. So seldom do parents admit this. I’m impressed with your honesty.
Thank you for your honesty too! Have a great day!!Tiffanywww.elastamom.com
The truth is ugly. There were times we felt relief knowing that C would die, knowing we *would not* have to “do this” forever. But we loved her, and did not want her to die! Until we felt tattered and tired again. Talk about a horribly vicious cycle of guilt. The truth is ugly, but it needs to be told. It makes the rest of us feel less guilty…
The shame in those feelings is terrible…but true…and we have to forgive ourselves. Have a great day!!Tiffanywww.elastamom.com
Oh my goodnes, thank you so much for writing this. This post makes me wish we were neighbors and could go to lunch regularly and be able to talk honsetly about how it is. I haven’t been at this as long as you and I admire your eloquence in putting these honest, raw, vulnerable, true thoughts and feelings out there like this. Such a lightbulb moment for me when I read what you wrote about being a mother and caregiver and the feelings invoked from the caregiver role. Thank you so much for writing this post.
Me too, Jo Lynn!!! Have a great day!!Tiffanywww.elastamom.com
I can’t tell you how many times in the past three days I’ve felt like this, but you’ve practical covered them all…tonight we tried a new pizza place. nope. bad idea. she didn’t like it then stemmed the rest of the time and because of that the shopping that normal follows only got us five feet in the door. took her out where she almost bolted twice. *sigh…* drive home and admit defeat, all the while trying not to sob…..thank you, I so needed to read this today…
I’m so glad you were able to find some comfort here! Have a great day!!Tiffanywww.elastamom.com
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Thank you for your honesty once again. And you ARE a great mother and sometimes we have to get tough even if it’s in public. I already feel so much of what your going through and Sophie is only four. Reading your posts help me prepare for what the future may hold for me. I used to be afraid but not anymore. You help give me strength!
You are always so kind with your comments, Charity! Thank you! Have a great day!!Tiffanywww.elastamom.com