Last week I went through a rough spot with my son at school. The details of the situation aren’t important. What is important is that it left me devastated.
The details don’t matter because, from the day my son was born nearly eight years ago, there have been constant situations. His life has been one, big struggle and therefore, my life with him has been as well.
In the midst of last week’s ordeal, I was shooting off an e-mail and made a statement about how having a child like my son is “such a challenge.” The person to whom the e-mail was sent, responded by saying that “all parents feel challenged” and that “I am not alone.”
I understand she was reaching out. I understand she was trying to make me feel better. Misery loves company, after all. The problem is that I do feel alone.
My son is different. He is unlike any other child I have ever known. I have had experiences as a parent that most people never will.
All parents know what it’s like to get up with a baby in the middle of the night, but how many moms had to feed their baby every three hours, round the clock for thirteen months? And, it took an hour and a half at a time just to feed him two ounces of milk.
How many parents have handed off their kid to a surgeon? Nine times.
Most kids don’t obsess over the number 10, want to rub people’s arms or have to take medicine every day of their life. Most parents don’t have to worry that their child will have a stroke, or watch him to make sure he doesn’t look more blue than usual.
My son can’t hear well, can’t speak well, chokes easily, vomits easily…and all of this? Is after he has come leaps and bounds thanks to countless therapy sessions. The occupational, physical and speech therapy sessions that most parents never have to attend.
I find myself constantly clenching my teeth, my body tense, my mind anxious.
My son is not a typical child and that’s okay. With the exception of taking away the physical pain he has suffered, I wouldn’t change a thing.
Watching him overcome so much, seeing him grow and become someone we never thought possible has been amazing. It is a journey like no other and, though the road has been bumpy, it has taken me to beautiful places that I didn’t even know existed.
The events of last week left me upset, not because I wanted pity, but because I wanted understanding and respect for my child. I don’t want his struggles to be dismissed, because they are not average. They’re monumental.
As for me? Well, every parent faces challenges, but I am guessing that they don’t dredge up the memories of the hundreds of challenges which came before. That is where I was last week; standing alone, in a place where images of our past were swirling around my head. Visions that left me sick and dizzy and ready to circle the wagons around my boy.
My son is not every child and I am not every parent. There are times when we can stand side-by-side with our peers, but there are just as many times that there is no comparing us whatsoever.
There are times when we are alone. And sometimes, being alone gets awfully lonely.
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Avitable
I've been trying to think of something to say to this post other than I'm sorry you feel alone, but everything seems like a cliched platitude. "You and your son are a team" "Alone means unique" "Eye of the Tiger", etc.
So, I'm sorry you feel alone.
WeaselMomma
You are alone in your experiences to a great extent. All parents face challenges, but yours have been seemingly insurmountably, yet you and your family have survived and thrived. It speaks volumes about the people that you are and your strength (even when you don't feel strong) is inspirational to those of us on the outside looking in.
One place that you are not alone, and never will be, in in the club of people whom your son has stolen hearts. Although, once again, you're level of involvement is far greater and more intense than the rest of us will ever experience.
Mum-me
I am so glad I have not had to face the challenges you and your son deal with on a daily basis.
I wonder if there is some kind of support group where you can talk to other mums who do understand what your life has been like since the day your son was born? It may help you not to feel so alone.
Debby Griffith
I understand your feelings, being a parent of special needs kids is so tuff and lonely sometimes. People can say "I understand how you feel" but how can they really? Do they wonder what will happen when we are no longer here to care for them, the terror of somehow them falling into the wrong hands and being taken advantage of. I am terrified to think of the future sometimes. I am here for you even though in the last couple of years we haven't been really close… I am here. Thank you for always saying your feeling so I don't feel like I am alone so much with my feelings and fears.
Melisa with one S
I love you. ((((Momo))))
Jodi
See above.
You and your son are pure awesomeness!
UP
Statements like this – "all parents feel challenged" and that "I am not alone". – are insensitive, and usually, a well meaning individual makes them. Every child is unique, every struggle is personal, and though you are "alone" in your experience, you truly are not "alone" in the fact that so many people in the world both real and "blogosphere" love you and wish you success.
UP
Hockeymandad
I wish there was something I could say to make you not feel so alone. Never mind the "all parents face challenges" stuff, challenges suck. Especially when your children feel anything other than pure joy from the experience. Just know in your heart you are doing amazing things as an amazing parent and your son loves you.
Angella
Oh, sweetie. I'm sorry you feel alone. I don't share your experiences, but I'm hear to listen to you any time you need. xoxo
Amy
I wish you had a community of other moms whose children face health challenges to make you feel less alone.
Is there a group in your town/through your hospital/through your church, etc. that you could get involved with?
(As if you need one more thing to do… but it might help).
Heather @36 balloons
I very much get what this feels like. My son has a lesser degree of dysphagia and no he isn't a picky eater like lots of kids are picky eaters. I've caught puke in my hand in more public places than I care to recall. So sorry for the trite words that made the struggle feel that much more isolating. At times for me it also makes the celebrating of the ordinary accomplishments feel likewise as lonely.
Sadia
You know that I don't believe in religion or fate or any of that stuff. I do believe, however, that your son is where he is today and how is today because you are the mom in a billion who could get him there. You're right. You are alone. I don't get it. There may be a parent or two out there, other than your husband, in a similar boat, and only they can get it.
Although I don't get it, I love you and am inspired by you. In love, you are not alone.
Angie [A Whole Lot of Nothing]
We are always here to listen.
BeautifulWreck
Hugs!
I often feel alone because my 9 year old son is bipolar. Parenting him has been like walking a fine line between heaven and hell. Feeling alone in parenting our kids pretty much sucks ass.
I am sorry. There are those of us who do know what it feels like to be alone in parenting kids that require more or that are more challenging, even if it isn't exactly like the path you are own.
Monica
All parents DO face challenges, but every parent experiences them individually. Sounds like whoever said that was dismissive. You're experiences are not the norm. Many of us have no idea what your life as a mom has been like, can't imagine it really.
I think you are amazing. To bring us into your world and to share what your son has been through (and your daughter) and to make us laugh…all amazing.
Here's hoping for more days when you can be reminded more of the blessings and less of the struggle. And here's hoping for more understanding of your (and his) struggle.
Take care, Momo!
Kat
I have nothing to add other than a gigantic hug (((HUG)))
meleah rebeccah
I wish I had words to express how much I feel for you and your family – but I dont. So all I will say is that I think you are AMAZING. And here is a virtual hug. xoxoxoxo
Lynn @ Walking With Scissors
((((hugs))))
Kori
This post makes me want to come over there and slam someone's head into a wall. It is so effing condescending for anyone to say they understand your pain or every parent feels challenged because most people are NOT challenged in the same way. I would seriously liek to break her nose. Even though she meant well and was reaching out.
I send hugs.
Amie aka MammaLoves
And alone sucks…sometimes.
I'm sorry you're feeling that way.
Really.
Misty
without coming across sounding like your well intentioned friend- i could have written this. I am raising an emotionally impaired, attachment disorder kid in a world surrounded by traditional birth families… normal solutions for average kids don't work for her. EVER. In the way that kids think and function, she does not… and no one gets that. It's hard. So hard sometimes… Sometimes far less beautiful than I want it to be…
alone sucks… but you've got to believe that there was something in you that can do this. At least that's what I tell myself. 🙂 Alone, yes… but also "the chosen." 🙂
Kathy
I know it must be so difficult for you some days. I could not do what you do. That is why I don't have children. I'm not wired for it, I'm a lazy person and I fear I would screw it up.
But what you do is miraculous and your children are the luckiest kids around to have you as their mother.
Hugs from PA,
Kathy
Wendy
First of all my heart goes out to you.
You are a phenomenal person with phenomenal strength.
I just hope that you can feel the enormous out pour of love and adoration written on this page.
You are not alone, but rather enveloped by a group of people, linked arm and arm with you standing in the middle.
Wishing a peaceful night my friend.
Wendy
Ironic Mom
I just want to thank you for writing this post. You wrote it beautifully: raw and real.
You are a strong woman.
Aunt Juicebox
The things we go through in life make us who we are, and you obviously realize this. It's terrible to feel alone, and even on the best days, we all sometimes do, whatever our reasons are that make us feel different from everyone else. I can't relate to having a sick child, but I do respect you for what you've done to take care of him. It takes someone very precious to be the kind of mother you've been.
Jana
I never know what to say about your son other than I admire the strength in both of you. You are absolutely right no one can comprehend your sons exceptionalities. You have been through so much that he doesnt remember but you do. Lessening that distinction is sort of making the issues seem small and they arent. I know that much, so you are not completely alone my heart goes out to your lonely place. I cant wait to meet you in person.
Tara R.
The challenges our children face are definitely different, but I can empathize with your feelings of going it alone. I don't know any other parents who are dealing with the same challenges our family has. It's hard not having anyone who completely understands, but I have a willing ear and a strong shoulder. I'm here any time you need.
Corey~living and loving
NO path of parenting is exactly like another. but some are certainly WAY more challenging and emotionally trying than others. Thank you for sharing so much about your journey. You are not alone in the sense that we all care, and want to support you. ♥
AlisonH
Crum. Wishing I could come offer at least a hug.
And wishing I could introduce you to my friend Rebecca, who writes ignorethecrazy.blogspot.com. She and her husband had a child, then adopted two, and about the time they realized the second was mentally handicapped was when they found out she was pregnant with a Down's syndrome baby–two special needs children. One whose face clues in outsiders, one whose face does not.
Heather
I want to give you a hug right now 🙁 I am so sorry that you were feeling alone.
Davina
Momo,
I can only imagine how lonely you must feel. But every time I see your son, I thank God that he has brought him into my life. I think he can teach all of our kids to except children who are different.
I remember once when I was in 3rd grade I was suspended from school for 3 days because I got into a fight with the school's biggest bully because he was picking on a "different" child. I didn't care that I was suspended b/c I knew I did the right thing standing up for him.
I want that for my children. I want them to know we must fight for the ones who can't fight for themselves.
Your son is different. But as a parent in his class, I wouldn't change a thing. He is a blessing to everyone he meets and "rubs".
You may feel alone. But hopefully you won't feel that way forever, b/c we are here for you.
mrsmouthy
Thank you for sharing some of your world with us. It's easy for the blogosphere to forget about how fragile and precious your son's life is, especially when he does things like call beef stroganoff "barf." He is such a normal kid for someone who is completely not like the rest of us. That's a huge testament to all the love and time you have poured into him from the minute you two first met.
Geeks in Rome
I still don't know how you cope.
You are amazing because despite the worries that must haunt you every hour of every day, you have shown us that you are still able to push those worries aside when possible to just enjoy your son.
Thank you for sharing that gift: to see beyond the past and the worries and what-ifs and see the perfect-for-just-one-second now
Deb
I think motherhood is a lonely proposition, in general. Then circumstances arise with some children that make the experience even more isolating.
My son's medical issues are now in the past, but I remember feeling like no one understood him or me while we were in the thick of things. It was so lonely. I'm so sorry you're in that space, but I admire you for being so eloquent about it. Big hugs.
AlisonH
(p.s. Go Davina up there!)
KWG
I have no idea what you're going through, but God bless you, your son and the strength to express your loneliness and frustration; the strength to carry on.
St
Yes. There are times when I feel so alone with my daughter's problems. Usually when I encounter people who don't understand or when I run across ignorant, rude people who don't want to understand. Or when I have to RSVP no to her friend's party because she can't take part in the activity. I'm lucky to know a few mothers who have children with widely varying health issues. I never feel alone when I am talking to them, even though our specific circumstances are different.
Chin up. You're doing an amazing job.
ZDub
Love to you , Momo.
Aimee Greeblemonkey
Don't know what to say except HUGS.
Jamie E
I know we have some struggles that are the same and some that are different. I totally hear you loud and clear on this one (((hugs))) You're a kick ass mom!
I may have asked you before…Have you read Sacred Parenting? I loved it.
Robin Gadient
I know somebody special like you, who can relate to you. My sister-in-law Ivana on Maui-
http://jewelianahope.blogspot.com/
Sheʻs a brand new blogger for the last 6 months or so. I surfed across your site last night and hopped over here from the Pioneer Woman. I like to think Iʻm not wasting my time on the internet but actively participating in something. Maybe thereʻs a reason why I read this post right after trying to create some community for my sweet SIL.
Maybe.
With love for your family,
Robin
Amanda
I just started reading your blog about a week ago, and realize that this post is from a while back. I have a daughter who was born deaf, and she just started Kinder two weeks ago. She has also had some pretty scary medical issues along the way, didn’t sleep for years at a time and is also tiny and has some pretty major sensory issues… mostly that include clothes and food. I loved that you said besides the pain you could take away you would not change anything about your son, and that his life has taken you to beautiful places. I feel exactly the same about my daughter. She has had 5 major surgeries, and although your situation was life threatning and ours was not, I feel I can realte to your crazy life and your every day challenges especially with school. Parents are all challenged at some point but parents with special needs kids are in a different arena. I to feel alone a lot of the time because although my friends are there for me and my family, no one understands what you feel as a Mom trying to help your struggling child. Thanks for putting it out there and making me feel a little more normal!!
Momo Fali
What a kind and beautiful comment. Thank you for sharing your story too.