I understand. That’s all I want to say today, really.
And I wanted you to know that you are not invisible.
I know it is the kind of hard that no one else can fathom.
I know you felt a knife rip through your heart and a wave of relief flood your soul the moment that a doctor or a therapist confirmed what you had already known for a while, but maybe hadn’t been quite ready to admit.
I know that the novel that sits by your bed at night is not really a novel at all, but a stack of paperwork to be read and signed and returned.
I know that the first time you walked into that therapist’s office you felt like you must have failed somewhere along the way. But I know you didn’t. Because there you are, sitting in the office waiting room, doing everything you can do get support for that very same child that you think you are failing.
I know that it is so hard not to harbor resentment in your heart.
I know that you might have had to give up a promising career because there are so many daytime appointments now where a guardian needs to be present. I know that it is putting a strain on your relationship with your spouse. I know that sometimes you have to count the minutes until the end of the play date because it is difficult to be around other mothers while they talk about issues that seem so mundane in comparison to the cards you have been dealt.
I know that your weight is probably different now than it was before you got the news. It might be because you have been going to so many appointments every week that dinner comes from a drive-thru more often than it does not. It might be because you are eating your feelings, or it might be because you have been so sick with grief over what could have been that your appetite has disappeared completely.
I know that you might need a little bit of time to grieve. And I know that if that little bit of time starts to turn into a lot of time, then you shouldn’t be ashamed to talk to someone about it.
I know that talking to someone, even your husband, might feel pointless sometimes because no one really sees your child like you do. They aren’t there all day every day and they don’t see all of the everything.
I know that sometimes when you get a break for just a minute and everything seems infinitely easier, it is hard to put up the mental roadblocks against what could have been.
I know that it is almost impossible to stay away from “if only,” but I know that you have to if you want to survive.
You can’t think about the way that things could have been different. You can only deal with the way that they are.
You are strong. So, so strong. Even when you don’t feel like you are very strong at all.
The years will pass. At first it will go so slowly and it will be so hard that you think you might never make it out alive. You might feel like punching me right now because I just said “years” and you’re not even sure that you will be able to hold yourself together until dinner tonight.
If you can’t make it until dinner, then it is all right to cry right now. No, you’re right. It won’t change anything, but I give you permission to feel your feelings anyway. And I promise those feelings will not always be sad ones.
The job itself will not get easier, but you will get even stronger and smarter and your tool belt will grow.
There will come a day when you feel confident and equipped.
And then something will happen that brings you to your knees and the cycle will start again.
But it will be okay, because then you will know that blossoms can grow in even the stormiest weather.
By then you will have seen such tremendous growth and progress that the blows will be a little bit easier to take, if only because you know that there is hope.
If you are looking to be able to connect with other moms who understand, I would love to have you join my Facebook page today.
Other posts you might like:
Thank you. You know I’ve felt and thought every one of these things. I’m sorry that you have, but also thankful that we’re not alone. Thank you.
I’m also sorry that you have felt them too, but I’m glad that we know there are other mommas out there feeling the same things.
I have two very special needs children (age 15 and 3) and these thoughts speak mountains… and are very accurate. Thank you and God Bless!!!!
This is beautiful Steph, and so so accurate.
Tanks, Kathy! That means a lot.
Thank You so very much…
I have never had an article describe my feelings so accurately. Thank you so much writing this.
I hurt. We are waiting for a diagnosis of something so awful I feel like I could die from heartbreak. I am so scared, I can’t even type this without my keyboard blurring in front of me. I don’t know what else there is to say. I just hurt.
My heart goes out to you. My son didn’t get a diagnosis until he was 17 and a research subject at NIH’s Undiagnosed Diseases program. Years passed as we waited for results of one test after another with no answers. It is excruciating. I will pray for you.
Time will ease that hurt, I promise. It won’t take it away but you will learn to cope. Love and prayers from one special mom to another.
I’m very sorry that you’re hurting…stay strong and continue to have faith…you’re not alone!!!
I can’t describe how true these words are… So true they make me cry. It amazing the joy I feel that someone gets it – especially the part about not being able to handle play dates for very long etc. thank you for writing this ??
I really needed to read this tonight. We had a really bad day yesterday and I have felt the exact same as these feelings. I would never wish these feelings on anyone, but it is glad to know I am not completely alone. Thank you for this.
It’s nice to know I’m not the only one. But also wishing no one would have to go through what we, my child & myself, have. It is a journey & it’s nice to know that we are not alone. Thanks?
I broke down in tears at the “strong” part. Thank you for writing this. I needed it.
My daughter from the outside looks “normal” apart from her AFO. We have gone through surgeries and UPS and downs. We were in a great few month stretch. Then boom. Heart valve repair needed. Out of no where. This hit my soul to the core. Thank you.
Thank you I know I am not alone
Raising a special child with severe disabilities has been all things… there is sooo much love for this beautiful child, but it is a marathon…and I have been feeling exhausted lately.
Thank you… It helps to know I am not alone.
Appreciate the piece. Please don’t minimize what it’s like for the dads.
Thank you. I agree. I can only write from my own experience. I have already put out a call on my Facebook page for a guest post from a father’s perspective.
Thank you for bringing the dads in. Let’s also include the grandparents, siblings, and whomever else may be raising children with exceptional needs.
This left me crying.
It’s hard days and long nights, family and friends who don’t understand. Communication comes in spurts and crying myself to sleep some nights. Solidarity helps, to know someone shares my strange, beautiful journey. Thank you.
No ones understands all these feelings better than the parents for kiddos with special needs! Having something like this to read when times are tough helps! Thanks for posting!!!
I need to say what everyone here has said, THANK YOU. No words can ever describe what you said, better than how you have managed to write it. Nobody gets it, but You got it. You nailed it. These are all my feelings and thoughts for the past 9 1/2 years as we continue to see our son struggle through Muscular Dystrophy. I added the 1/2 year, because every day counts, and we are not done. Again, Thank you.
The grieving period reminds me of when I found out my oldest son had turrets syndrome. I felt a lot of guilt assuming he was just making these annoying noises. Finally got him checked out when he went nuts on me telling him to stop the noises and he screamed, “I can’t help it! Do you really think I’m trying to make you mad?” Good point. I felt bad for at least the time it took to get it all figured out!
Over the 20 years that my special son was alive I felt every thing that is in this piece and some! Even now nearly 10 years after his death the guilt and ‘what ifs?’ are still there. Just knowing that they are people who really do understand does help a lot. Never be afraid to say ‘You know today is a bad day’, it is difficult to be strong all the time. And yes, don’t forget the dads and the brothers and sisters who may have to miss out during various appointments and illnesses etc.
Thank you !
Thank you. Thank you so much. This speaks to me on so many levels!!
Yeah, I gotta say thank you too, especially for the fast food part 🙂 I’ve felt this way and I thank you for putting this into words, it has been a great comfort to me.
This is right on point!!!!…thank u
Thank you! My husband has been a very strong support to me. I know if I had to do it alone I probably can, but I dont even want to consider it. Our sons ASD diagnosis at age 2 has turned our world into a very busy place. I honestly broke down crying when I read your words.
This brought me to tears…lots of them. All of these feelings are new to me and yet I feel completely alone because I have no one to share them with. Reading this beautifully written post made me feel more normal, less sad and infinitely less alone. Thank you.
Sobbing right now. There are such hard days. And even on days when my autistic nonverbal son is thriving…I am still sad. It’s like a rollercoaster. I am up and down and the tiniest thing can send me in the other direction. And it’s so damn lonely. Thanks for this great post. Hugs mama!
Thank you…I needed to hear that…very well said!!!
How can I express the gratitude I have that you wrote this? Only by saying THANK YOU for reminding me I am not alone.
Perfect timing to read this tonight. It does feel a bit better knowing there are other mothers who can understand our feelings. Thanks for sharing.
Thank you. I’m the mom of three boys on the spectrum. This really hit the nail on the head.
5 a.m. and can’t even tell if I slept last night. Full schedule ahead and totally overwhelmed already. Hoping another migraine doesn’t go full blown. This piece was shared with me and I am so grateful that I was able to take a moment and read it and put it in a favorites file. Beautifully written and dead-on, from the stack of papers, unread novel, fast food…thank you for putting it into words and helping me see that in the life that this is I am not invisible….
Thank you – sharing with the adoptive/foster parents raising traumatized children at the Attachment & Trauma Network — you’re right – we all get stronger and gather more tools!
The road has been soooo long I can’t even cry anymore. It IS good for the soul to see other mommas, like me, out there.
Thank you for sharing Stephanie! Cried the whole way through 😉 It’s nice to know we aren’t alone as Mommies going through these same feelings!
So well said. My daughter is now 42 years young. I have had all of these feelings over the years. I think one of the hardest was watching my nieces in her age group, do all the things kids do growing up. Learn to ride a bike, Graduate h/s, get Married, start a family etc, and know that my daughter would never ever do any of those things.
Anne-I’m with you on that one. My 22 years old is watching all of her (4 this year alone) cousins who graduated from Ivy league schools (!) marry. Just returned from one of the weddings last weekend.As happy as I am to share in the celebration for that cousin and her parents, it rips at my heart watching and mourning my loss for what will never be for her. Worse than that is having to explain on the way home why no one wants to talk to her for any length of time (not even her cousins). It’s a lonely existence, for both of us.
You are a very wise young woman! My grandson has CP and I not only grieve for my 7 yr. old grandson but I grieve for my daughter who is walking the wall of a special needs mom. Thank you for voicing the thoughts in so many SN moms heads.
Blessing
GMAMA JANE
This made me cry. I totally feel this way. Thank you for writing this. Sometimes you feel so alone and it’s good to read an article that just makes you feel like your not.
Thank you.
I Needed this.
Thank you so much for posting this. Your friends will say they “understand” but they really don’t unless they have lived it. I remember the conversation that I had with my daughter’s doctor the day the diagnosis of Cerebral Palsy came like it was yesterday. Luckily we caught the diagnosis early ( 11 month’s old) and we were able to start therapy when she turned a year. I remember that my heart just dropped and I felt like I had failed as a mom because I couldn’t prevent this. Thank you again for posting this. It is comforting knowing that the ” Mama warriors” are not alone.
Crying at this today after being turned down for an EHCP for our 9 year old asd/ADHD boy after already being turned down and now appealing for one for our 5 year old gdd boy 🙁 always blame myself and think I’m failing but least reading this I know we’re not alone 🙂 x
Being a mom with a child that has a very rare chromosome disorder, this makes me feel as if I’m not alone. It also makes me feel like you have seen and felt things threw me. Thank you for this and it makes me happy to know that I’m not alone
This truly is everything I feel. Thank you for writing this.
Thank you for this post!! This is exactly how I feel. The weight one really hit home and I was just thinking about it before I read your post. This was great encouragement today! 🙂
I love this. Thanks for sharing.
The last three weeks or so have been some of the hard ones. My daughter, who has both DS and Autism, is ten now. The hard times seem to be much fewer and further for me between as she grows, but when they hit, they hit hard. This was something I really needed to hear right now. I could relate to every single point you made, and feel encouraged because of it. Thank you.
Luv you for thinking of me.
Soo true – I felt exactly the same – but then I know that what I have is the worlds most precious gift from God and this gift s going to make me so strong in life!!!
Thank you for writing such a heartfelt powerful piece. It felt like you were writing this to me. ITs so nice when you come across other parents that “get it” casue so many people have no idea. Thank you for sharing
Thank you for acknowledging how hard it is for special needs mommas. This parenthood is so painful. Despite being nearly 7 years in after diagnosis, I still feel trapped in grief often. And I feel like a failure almost every. single. day. Thanks for validating my feelings.
Penny Williams
Author of “What to Expect When You’re Not Expecting ADHD” and “Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD”
ParentingADHDChildren.com
I’ve just sat and cried reading this ….I hurt now like nothing I went through before over the last 32 years ….I hurt as I watch her slip away from me every day ….This hurt will go but when it does I won’t have her anymore. …just an emptiness of where my daughter should be xxx
I needed to read this tonight. It’s one of those days where you want to just walk out the door. Of course, I would never do that. I couldn’t even bear the thought, but it was a rough day. Thank you for validating the feelings of every special needs mom. My son looks like a “normal” (I hate that word) 3 year old to most people. And I don’t have the time or energy to explain what is going on to most people. Plus, they would never understand. Thank you for acknowledging that giving up your career and the life you once knew and dreamed of can be hard. Most people never see that. I’m sitting here in a heap of tears, but also so grateful.
My 9 year old daughter was diagnosed two months ago with a rare auto immune disease called Juvenile Dermatomyositis. Prior to all of this, she was so healthy and I never could have imagined anything different. We were thrown into the special needs world overnight. I am still trying to adjust but have many moments of grief and breaking down. This is a beautifully written piece! Thank you for writing my feelings into words.
I so needed this today. Thank you very much.
Thank you, thank you,thank you for this. I am still wiping away tears as I write this, you truly captured what it feels like to be a mom of a special kid! I struggle everyday to not feel like a failure as a mom and reading this helped so much at just the right time today. Thank you again for sharing your words.
Thank you for writing this! I was having a very hard special mom day. This made me cry big, ugly tears and then feel much better that I wasn’t alone in all of the things that I feel!
I belong to an amazing support group, which means there are days I feel guilty for finding this so hard as others have it harder, I have days where I say “I just can’t do this anymore” and days where I see glimpses of a brighter future. Nothing I have read until now made me sob so hard. Not with grief, but release. Thank you.
Thank you! I really needed this today to know I’m not alone!
This is beautiful and so well said. I can relate to so much of this. Thank you for sharing it!
Thank you, Megan! I’m so glad I got to meet you yesterday!
It was so nice to meet you! I’ll be praying for a super fun and successful upcoming conference for you and your guests!!
My daughter is now 19. She has struggled her entire life with Tourette, OCD, anxiety, ADHD, and so on. Our lives have been held hostage by tics, or clothing tags. You name it we have dealt with it. Social issues still plague her and I wonder when life will ever get easier. I worry about her adult life and whatnot will look like. Your words are so poignant, true, heartbreaking and refreshing. Thank you for giving a voice to put world.
You have no idea how much this has helped me I really needed this to day it has been an awful morning and it is only 11am my son has a lot going on. Today I feel defeated but I know I have to keep going for him. so thank you very much for helping me today.
Very well written post. With a daughter with CP these feelings are very real and true. Time helps. Thank you for writing this, it helps to not feel so alone.
Yes. Thank you, Steph! Thank you for sharing this, and thank you for being such a wonderful resource. I am thankful that I found you! My son is 5. He has autism and I will need to read this many more times so I am going to save it…and print it…and share it.
I know this is an old post, but I needed this today. Thank you so much.
I’m so glad it found you when you needed it. Thanks for visiting, Emily!
My granddaughter could have written this, it describes her life totally. She calls our little angel (almost 4), her forever baby. As she gets older, the problems worsen, such as carrying her, her seizures, etc. Thanks for writing what is in the heart of so many mothers of special needs children.