I am exhausted. I am weary. I am tired.
Champion is a couple of months shy of turning four years old.
It has been four years since I have gotten a full, uninterrupted nights sleep. Its been four years since I’ve gotten to lay down before midnight. Its been four years since I’ve gotten more than a few hours of sleep at a time.
I am so very tired.
Parenting a child with special needs is challenging stuff.
It is hard to explain to others who aren’t in it the nuances that occur that disrupt almost every aspect of life.
It’s hard to explain to family and friends how difficult it is to go without sleep for this long and still try to be very present for an inquisitive almost four-year old who needs me to do and be everything for him. I am an extension of his hands, his feet, his legs. I am his voice.
If I didn’t feed him he wouldn’t be able to eat. If I didn’t get him out of bed he wouldn’t be able to get up. Right now, as things stand, if I don’t do something for him, there’s no way he could do it on his own.
Day in and day out I, along with countless other parents of children with special needs who are doing the same for their children, am my son’s everything.
It is bone chillingly exhausting.
Yes there are many many many beautiful rewarding moments as Champion’s mom. Just as being his mom has exhausted me to my core, being his mom has also changed me and my view of life for the better at the core.
Being Champion’s mom has defined me and refined me as a person more than any other experience. I could go on and on about how much being his mom is a blessing and a gift.
However, and this is a big however, as much as a gift it is being a parent to a child with special needs, if not careful, this role can become dangerously draining and it needs to be okay to talk openly and honestly about how challenging it is.
Awhile ago I participated in a small group bible study at a church. It was a very good small group where we were able to talk and share about the challenges we were facing in life. I really enjoyed the group and it turned out to be very therapeutic.
However, at the beginning when I began sharing about Champion and some of the harder things I face as his mom, one of the other women responded and said “Yeah but isn’t he just a blessing and aren’t you learning so much as his mom?”
And the answer to that question is yes, he is. Yes, the majority of parents who have a child with special needs would say that their child has changed them for the better, that their child teaches them about life and love and that they are blessings.
But, with that, parents of children with special needs need to be able to express and be understood that It. Is. Not. Easy. And that when we talk about how uneasy it is, that we are not downing our child, that we’re not ungrateful to be their parent, and that we’re not unhappy with the child we’ve been blessed with.
We are simply saying: This is hard, I need someone to understand that, and I need help.
Let’s Talk: What situations do you find yourself in that are hard to articulate to others how much of a challenge it is? How do you handle expressing to others that you need help? Is it easy or difficult for you to ask for help?
Photo Credit: La Melodie
Linked at : Pour Your Heart Out, Fellowship Fridays, Love That Max: Special Needs Blogger LinkUp
Oh honey, it IS okay.
Being exhausted is normal. Being confused is normal.
Nobody knows what they’re going to get when they decide to start a family, and we all do the best we can. And while it hurts even to say to yourself, “I didn’t ask for this,” it’s okay. Because we all have so many things we didn’t ask for, and so many of them are GOOD things, we just didn’t know it yet. And when you come down to it, there is so little that we would change.
Hang in there, mama. <3
Thank you for coming by and for the encouragement. Special needs parenting is exhausting and confusing and often very unexpected. Encouragement and support from others is one of the most helpful things on our journey, so thank you! So many aspects of this journey have been really really good, but there are so many things that have been challenging beyond words. I wish there was some way I could have learned these amazing lessons I have learned as a special needs parent without my son having to experience the suffering and challenges he has faced. I think I am still in a place where I do wish I could change things for him, solely because watching him struggle is really hard. You’re so right, none of us know the journey we’re going to go on when we start a family. Thanks for taking the time to encourage my family and I on our journey.
Thank you for your honesty.
It IS hard. And yes, our kids are blessings and they teach us so much… but it doesn’t mean that in every moment I think oh yay, I’m SO glad we have to go through this… instead, I have moments when I think I wish this could be easier.
Exactly Shell! I have many of those moments where I wish it could be easier. Thank you for sharing that you have those moments too. There are many of the blessing, teach me so much moments too and those are so much easier to share than the this is down right hard and this is why moments.
It is difficult to help other’s understand and I think sometimes, by trying to encourage or help SN parents find a bright side (like the example you gave of “but isn’t he such a blessing”) people end up diminishing the exhaustion that many of us feel. I work full time and although it’s a blessing to have a job and be able to provide for my family, it’s still a lot of work. If I complained about the long hours I would be shocked if someone responded with “but aren’t you just happy to have a job?”
The truth is, I think our situation as SN parents can sometimes make people uncomfortable. They don’t know WHAT to say so they either diminish it (which is frustrating) or make it even bigger than it is with comments of (I could NEVER do that, or I don’t know HOW you do it). The truth is, before I was a SN mom, I don’t know how I would have responded either.
I’m glad you pointed out that it’s okay to speak this stuff out loud. To SAY that this is hard. I think we all need to do that sometimes (or often!).
I completely agree, I think people mean very well when they point out the bright side. I think it really does come from a place of compassion and without meaning to those responses (blessing, I could never, I don’t know how) often end up just shutting down any opportunity to really express how challenging it is. I’m with you, before I was in this situation as a SN mom I’m not sure how I would have responded. This has definitely taught me to make it a point to give people space to talk about their challenges and try not to say something that would diminish what they’re going through. I think SN parenting is a tricky one, because it does really make people uncomfortable to talk about, which in turn makes it hard to find a safe place to really express. I checked out your blog, which I fell in love with, and LOVED this post you wrote here. I loved it and addressed so well another commonly said thing to SN parents. Thanks so much for coming by and sharing your thoughts and relating!
I’m so glad you enjoyed the blog! And I think you’re right– talking about SN kids is especially uncomfortable for people. Maybe it’s the fact that the answers aren’t black and white. Even when someone loses a child or a family member there are certain things socially that we all know to “do.” We send condolences, we let them grieve (which is expected to be long, hard and ugly), we send food, etc. But having a child with SN causes grief in a similar way– but it’s almost like a cycle of grief that never ends. Sometimes I feel like, right as I get to the acceptance phase of grief, something happens (like seeing kids his age run around and play) and I start over at the beginning again. I think it’s uncomfortable for people because there isn’t a known or established social way to deal with our situation. Everyone’s just kind of stumbling around trying to figure out how to be helpful and for many people I think it’s most comfortable to just ignore it. Not out of cruelty but out of fear of doing the wrong thing.
I feel like that much of the time too! That is a a good way to put it, a grief cycle that never ends. It took me a VERY long time after my son’s diagnosis to look at anything special needs related and when I finally did I read this book that talked about how the grief starts again as the time frame for when milestones were supposed to happen passes. I’ve sort of seen that be the case in my grief cycles. I’ll be doing really good and then bam I’ll be hit with the grief again and kind of have to start all over (only I’m learning how to cope better now, finally). I think also a lot of people who aren’t in it don’t really understand necessarily that there is such a complicated grieving process that SN parents are going through. I think you nailed it that there isn’t really any established societal norm for handling SN situations and that fear of doing or saying the wrong thing is a big one. I think our society has kind of fallen into handling it with the “Special kids are given to special parents” statements which you did an amazing job of being a voice to aid in debunking that!
My son is 18. I still do the grieving thing at times, but today, when I was asking him what he wanted to do (sit in his wheelchair, stay in bed) he said no to both, so I asked him if he wanted to dance, and he said yes. I could only smile at that, and I got him up and danced with him (which consisted of holding him upright–he is about as tall as I am–and swaying back and forth). He laughed and smiled to no end, which makes me happy thinking about it. My experience is that there are good days and bad days, and I like to try to hold onto the good days as much as I can, as well as to find ways to do things that make both of us happy.
It is tiring and it feels like people don’t understand. Raising a child with special needs doesn’t ever stop, the worry never goes away, never gives you a break. I hope that you can find some fresh energy and hope to help get through these days. When my oldest daughter when to full day school I felt like I could take a breath and trust that she was in good hands. I hope you find that same peace too.
You are so right, parenting a child with special needs is definitely an ongoing role with many tasks that there are no breaks from and it is really hard to express to those who aren’t in it just how hard it is. When it comes down to it, it is just downright hard in many of the ways you mentioned. There’s so much to think about and do and true breaks are so few and far between. I’m really glad that you found a good place for your daughter to be in school and that it gave you a chance to breathe. That is encouraging to hear. Thank you very much for coming by and also for the hope for me to find some peace as well. I definitely appreciate it!
I found your blog through Ellen’s weekend link up. I really appreciated this post today. I hope you don’t mind a little rant of my own. It is just so, SO hard. And that makes people uncomfortable. I am always trying to say something positive, so that people won’t feel bad. I think what most people don’t get, is that it isn’t only the big things (toileting, tube-feeding, using a wheelchair), but all the little things that we constantly have to be worried about. NOTHING is easy. People say to me cheerfully, “Well you can do what other people do, just differently!” Differently must mean harder and more stressfully, with no relaxation involved EVER.
For example, my son loves to go swimming, but to take him to the pool requires me to pack a bag as if we are going away for a weekend, and lugging it in while pushing my son’s chair. It means bringing along a lunchbox with all his tube feeding supplies, and water and blended food in case we run late. It means lifting him and changing him into a swim diaper as discretely as possible out in the open, because there is no adequate accessible changing area. It means getting the wheelchair in and out of the car, and in and out on the way back. It means needing to have an extra person along to help, because I can’t give my son the 100% attention he needs, when my 16 month old daughter needs help too. It means missing out on a lot of what my daughter does, because I have to go into the pool with my son, even on cold days when I really really don’t want to. It means never taking my hands or eyes off of him. How I envy the moms laying on their chairs watching their kids swim as they look up from their books or iPhones. It means having to field questions (mostly from kids) like “is he a baby?” “why can’t he talk?” “what is WRONG with him? It means interacting with those kids, and never making friends with the moms, who are socializing amongst themselves in their cute little bathing suits. It means having to act happy, for my son’s sake, and for the sake of everyone else who would feel awkward if they knew how tired I was, and how much I wanted a break. It means planning the WHOLE day around one outing to the pool… adjusting the hours of hands on therapy I do with my son, and also adjusting his feeding and water schedule, as he has terrible reflux. It means having to leave the pool early, because once out of the water my son gets cold and needs to be dressed immediately. And changing a wet cold boy, whose muscle are making all his limbs contract tightly in is hard. It means going home only to have to do all the care taking, feeding, and lifting and worrying at home, and never ever ever ever having a day off, or a vacation to look forward to. Or a good nights sleep. Yes, my son can go in the water and “swim”, and yes, it can be fun (really fun!) because my son loves the water, and I love to see him happy, but it is HARD. Thanks for letting me rant… I needed that today.
Meghan, I am so glad you had a chance to rant. It is so necessary and healthy for us to do. My heart goes out to you and I also feel you on how challenging it is. So many of the things you expressed I was reading and nodding and wishing we could sit and talk in real life and just comfort each other and be there for each other to understand what life is like with our sons and all that it requires. I know you said you needed to rant but I think I needed to read your rant and know that I’m not alone in so many of the challenges and thoughts I experience. Our sons sound similair, mine is on a blended diet with pretty bad, life disrupting acid reflux also. My heart goes out to you and I am really glad that you came by and ranted today. I appreciate you taking the time to share the challenges you are facing. I so wish I could say or do something to make it better but I know that there’s really nothing that can be said, so I will just say you are welcome to come and rant anytime. Getting it out is so very important and healthy to do.
Oh Yes i understand. One simple outing is a whole day well planed event which something will surley go wrong. When my son was but a baby and i took him out i wandered why i never harldy seen older kiddos with diabilites out. As my son has gottne older i sure am not ignorant of why now. I feel so gukity but most days its all I can do to meet the needs of him at home. I am bone exhausted and its so hard to know hes just a boy who wants to go out and see the world. I am almost 50. I am divorced so i walk this journey alone. Its a harsh world for the disabled and their loved one. Full of heart break and guilt. Because we cant do it all.
Wow! I can completely understand every.single.thing. you just described in your comment above, about going to the pool. I can so completely relate that I found myself sobbing as I read it because that is exactly what I go through when taking my son to the pool. And the feelings you related about having envy for the other mothers who are socializing or relaxing on their chairs. I can’t do that either. And I also have another child (typically developing) who wants my attention, too, and I also miss out on some of the things she is experiencing because taking care of my son requires every bit of my attention and care. Thank you for sharing…it helps me to know that I am not alone.
Rant away Meghan. As our kids get older it seems harder and harder to take them anywhere, every small trip is a hugely planned expedition . Sometimes we get sick of putting on the happy face and just want acknowledgement that’s its hard. It is hard. I so get it. Hang in there.
Oh, man! We belonged to our neighborhood pool for a number of years, and I would take my son because he loves swimming, but it got to the point that I could not do it anymore. It was too depressing for me to be there going back and forth with my son (total care, like your child), wishing I could have someone to talk to, but almost no one ever interacted with me, or if they did, it was only for a few minutes. I am feeling sad and a bit guilty as I write this. And my husband almost never would go with me–didn’t like swimming. My son does have aquatic physical therapy once a week, which he adores, so that is better than nothing. He would go every day if he could. Now, I would need two people to get him in, though I hear that the pools are having to put in lifts to comply with ADA.
One suggestion– get him a shorty wetsuit. That has always made a huge difference for my son (no body fat…got cold very easily).
My husband is 62 and I am 60 and our special needs “child” is now 34 years old. He lived with us for 22 years and then we were fortunate to be able to get him into a local group home (3 miles away) which he loves. My husband continues to have a lot of guilt about this, but I refuse to. Having our son in a group home setting allows us something we didn’t have for 22 years and that is relaxation, sleeping late at times, being able to go out of town…just the mundane everyday things that other parents of “normal” children get to do once their children are grown and on their own. We have a forever 2-3 yr old and it becomes exhausting after many years. I still work full-time and my husband is retired. We bring our son home for a night every week-end and also on holidays for family gatherings and he loves this; but he is always ready to return to his “home” and we are ready for some peace and quiet. In March of this year, he fell and broke his hip and he had surgery and weeks of in-hospital rehab. One of us had to be with him 24/7. It reminded us of how hard it was to have him at home for 22 years. Don’t get me wrong…we love him with all our hearts; he can be so funny and he still loves his Barney videos and game shows and he loves to go bowling and he loves family get-togethers with his extended family. But even now, he can still be a real pain in the butt, stubborn and headstrong and he is a real manipulator….LOL.
So to those of you who still have young special needs children….I remember how exhausting and mentally draining it can be. I remember the nights of little sleep and dealing with seizures and doctor’s visits…and I also remember the people who said (with good intentions) that God chose us to raise a special child . We were ill-prepared to have such a blessing bestowed upon us, but we have managed and learned a lot….but not without pain. I would be lying if I said it was a route we would have chosen….and getting older, as we are, presents a whole new set of circumstances. God isn’t finished with us yet!
Thank you so much Paula for sharing your story. It’s always good to hear from people who are further along on their journey than we are. It sounds like you guys have a really good arrangement with time with your son and also time now to do the “normal” things that just aren’t afforded parents when they are raising (or have an adult child) with special needs. I imagine it was probably a pretty difficult transition though especially with you and your husband feeling a bit different about it. I think guilt as parents can be really hard to overcome. I am really encouraged by your refusal to feel guilty and also the upbeat way you look at your situation. Lol to your description of your son also, it does sound like he’s a joy and a handful all at one time. Thank you very much for taking the time to share and also encourage those of us who are more or less just starting out on this journey. I think it so important to hear from someone who has been there, done it, is doing it further along, and who truly understands how hard this is.
I can’t even begin to express in writing how much your post about your adult child means to me. My son is 7 and his future is what is the most difficult thing to think about. Thank you so much for your thoughts on his “home” away from your home and what it is like to have an adult with special needs. My son still love his Barney videos and I often wonder if he’ll love them when he’s an adult, too. I cried when you wrote that about your son because I can relate.
Thanks for sharing Paula. I’m so glad you don’t feel guilty about finding a home for your son. When we decide to get pregnant and have children we often sign up for whatever we r handed BUT I don’t believe anyone signs up for 40 plus years of diapers and a never ending loop of Barney. Thankfully we live in a society where we don’t have and safe happy assisted living options are out there. It doesn’t mean we love our children any less just like typical empty nesters enjoy having their homes back to themselves when their children move on don’t.
I, too, have an adult special needs child at home with me. He’s 31yo – has spastic quadriplegia CP, is developmentally delayed, wheelchair bound, loves Barney, Sesame Street, games shows, golf, bowling and lots more. He speaks no more than 300 words but finds ways to get his point across real well. He’s 24/7 care.
I’ve done a majority of caring for my son on my own…I’m now going on 54yo. His dad left when he was 2 and he hasn’t seen him since he was 10. My daughter’s father came aboard when my son was 13. Though he helped with some things – most were still held on me and yes, it has been hard. I often found myself referring back to the poem Heaven’s Very Special Child. Reading that was comforting and gave me strength to carry on. But then as my son aged – it got a bit easier. Less doctors appointments. Routine set in. More programs became available.
And though I see where Paula comes from in placing her son – not all of us can do this. Not just because of location. Not just because it seems like the natural thing to do due to age. Not because I am unable to care for him any longer. For me – I can’t stand the thought of someone abusing or neglecting him in any way, shape, or form. And yes, unfortunately, that does happen. It’s happened in my home with LNA’s. It’s happened with day support individual’s from his day program. It’s happened most recently right at our local hospital more than once since June 2015 thru Nov. 2015 (he was admitted 8 times – not the norm – but b/c he was so sick from needing his gallbladder removed and then complications from the surgery). It happened when he was placed out of the home when he was a child after surgery as they couldn’t get me enough help in the home. I’ve been left with a very bad taste in my mouth.
Though – it should be said that we live in a state where we are very fortunate to have adult day services like Easter Seals. I have control over his day program. We get LNA’s in the home and I’m not afraid to speak up and say – this one is not a good fit. I just had to do that over Christmas with a fill-in. We have respite funding – I hire the providers. Our home is invaded on on a daily basis and has been since my son was 5 when we were one of the first to received in home care supports. Even with all this, it can be hard – no – it IS hard, but I won’t place my child because there are just too many cases of abuse, neglect, etc. that are all around. Instead, I’d rather know my son is in an environment where he’s well cared for. Loved. Thrives. I will deal with the rest.
I also know that someday – sooner than later – he will be gone. Upper respiratory will be what takes his life. I was told this from infancy and reality slapped me in the face this past summer when I nearly lost him twice – all because he kept getting aspiration pneumonia – now thought to be caused by the gallbladder. Beat myself up over not realizing sooner than later that he was ill? Yes, I do on a daily basis. Just as I do for not realizing he had been sent home on a different antibiotic than he was on in the hospital that caused him to be emergently intubated from being allergic to that antibiotic as he aspirated on his vomit – just another of the many (over 10) that he’d been placed on throughout a couple months time. For nearly 20 yrs. life was pretty calm and then all hell broke loose. The one thing I am not prepared for and what I need to prepare for, will be the day he passes on. It’s going to be heart-retching. Though in the next breath, I don’t want him to live in this world without me. I came to that definite conclusion throughout all the hospital stays we’ve endured the past few months. He would have suffered much pain because he doesn’t express pain like most. He would have never survived if he didn’t have myself and his day support person advocating for him on a daily basis.
Yes, I am tired. Yes, I will fight for his life. Yes, I spend more time on the phone following up with providers – but this too shall pass once he has healed from the surgery. Yes, I will have an empty nest someday – one where there will be such a void like no other. Such a change in lifestyle. Such a change that will take me down a road I’ve never known as an adult.
I was so tired this past Christmas that I didn’t even decorate the house. I decorated his room because we were going to have to bring Xmas to him b/c he can’t get out of bed right now. Did I miss my home being decorated? Absolutely. My heart was broken not to see all the lights and all my snowmen. But then all I had to think about was what if I didn’t have my son with me? The answer was clear. Those decorations would mean nothing without him.
Though, it’s okay though that I am where I am today. I’ve given my son the best life possible. Mine, though limited, isn’t bad…it’s just not colorful. But I still have a quality of life. It’s been a life of fighting for him, and in turn, fighting for those families who can’t. See my son came into the DD system when the state school closed. That’s where all individuals were housed from birth until either death or the closing of, that had disabilities. In doing so – we have paved the path for other families that have come into the DD system. Maybe that is what my purpose in life is/was suppose to be.
I’d like to leave you with this. Don’t ever give up! If you feel something in your gut – go with your gut because more than likely – your gut is telling you something. We were told Ryan would be a vegetable after his first brain surgery to remove what they had no idea they were going in for, at 3 weeks of age – he had a severe hemorrhage and they had to close (ended up being a tumor caused by his dad’s genes and mine not being compatible). He then had another for a shunt placement at 7 weeks of age. He’s had many orthopedic surgeries. But this child of mine – he’s NOT the vegetable they said he would be. Time and perseverance prevailed. He can feed himself. He has a verbal vocab – yes, it’s limited but he has one. He has a personality like no other. He loves unconditionally no matter who you are. He’s full of life.
And – he was given back the voice he lost when he was 6 – at the age of 30. He does Assisted Typing now, once known as Facilitated Communication, which the state stopped because of all the controversy, allegations etc. when he was in the first grade (shortly after it was implemented in our schools). Sure, I could have continued on on my own but as you know – unless all hands are on board – it’s not easy.
And despite all the controversy now over Assisted Typing – it’s what saved his soul this past summer. He’s the one that typed all his ailments which led the doctors to doing the tests they did. Every medical test backed up what Ryan typed. They found gallstones. They found kidney stones. He had a massive UTI that landed us back in the ER 28 hrs after being discharged with a diaper full of blood – he told us it felt like “knives when he pees” but doc thought it was nothing. Pneumonia – his belly hurt, his pulmonary (his word) hurt, yep – pneumonia several times over.
I could go on but I will leave you with that. Much love and hugs to you…you can do this. It won’t be easy, but you can do this and I know this because you aren’t afraid of speaking up.
Jo Lynn,
I saw your post on lovethatmax; the title caught my eye because I can completely relate. My son is 7 and like you, I have to do everything for him…he needs help with every skill and it does get very tiring. I know EXACTLY what you mean when you wrote in one of your comments that you wished you could have learned what you have learned WITHOUT your son having to have special needs. I have thought that so many times about our situation. I have prayed, “God, if you wanted me to learn patience and to have greater faith, why couldn’t I have learned it in a way that would have affected ME, not my son?”
It IS so hard to be the parent of a child with special needs and we DO need to talk about it. People don’t really know and can not ever really understand unless they have lived our lives, so being able to express my thoughts on my blog and replying to blogs like yours gives me a chance to do that and be understood.
I saw a conversation between you and another person who commented on your blog about the grief cycles. I wrote about that in several posts on my blog http://www.notjustanyone.org/2013/05/23/its-okay-to-be-angry/ and http://www.notjustanyone.org/2013/06/12/overcoming-depression/
I hope that you can find moments here and there to get a little break or to be able to talk to someone who can just listen. Because we all need that….some RESPITE to refresh ourselves in order to go on and someone to LISTEN and not talk away our problems or around our problems, but really just listen while we talk about how hard this is.
Thinking of you!
I think being able to relate to other moms has been one of the most beneficial parts of blogging. It is so good to read comments like yours from other moms who just know exactly what its like. Its been hard for me to find people in real life who I can just talk to, so hearing from others in the blogging world has been a really good thing. Thank you for sharing the posts about the grief cycle also. I am definitely going to check them out.
As a mom of a two year old who is not special needs, I can only imagine what you do day-in and day-out. I think this need of being able to share openly the struggles of motherhood can be said for all parenting. It’s hard work. It’s exhausting, sanctifying work. It’s just plain hard. And sometimes it’s just nice for someone to just listen and say, “I’m sorry it’s hard” without trying to “fix it.” So again, even though I’m not a special needs mama (though we’ve considered adopting some day a special needs child), I agree. Thanks for sharing at Christian Mommy Blogger. This was a good read for me tonight.
Very true Leigh Ann, being able to share openly our challenges is really important on so many levels. I think whatever situation we find ourselves in as a parent, if we can’t express and be understood that something is difficult it can be really unhealthy. Thanks for coming by and reading!
I’m ready to break down in tears reading all of this I can relate to every single one of the posts almost. I have a special needs daughter who I had at the age of 16 I didn’t have the help of my parents or inlaws luckily her dad stuck around to help if it werent for him I honestly dont know how I would have made it so far without his help. My daughter is now 7 though mentally she is very advanced physically I have to do everything for her and it is so hard sometimes I feel bad because I will be laying in bed and she yells that she has to go to the bathroom something so simple becomes a daily job ane I hate when I get irritated (not at her or to her just in general) because I know its not her fault but. sometimes I just want to lay there and not get up. And I always feel like no one understands what I go through on a daily basis its down right HARD and exhausting we may make it look easy but its not and everyone my age cant relate with what I go throughso I feel alone in this a lot of the time and it sucks. Thank you for this blog and for letting me vent.
Vanessa I’m so glad you vented and shared your story. I completely understand the just wanting to lay there and not get up, even though its for something that absolutely has to be done. I feel this way often, like almost every single day. I think you really hit something here about making it look easy. I think a lot of times its hard for others to really see how challenging this is because as parents we do make it look easy. I think we just keep going, everything is done so often that it becomes second nature and from the outside looking in it can seem like we have it all under control, when really we’re tired and exhausted and need to be understood that is really hard. I’m really glad you came by and shared. Thank you.
The part I can’t stand is when people say, “but he’s doing so well! You should be grateful for that!” Yes, I thank G-d everyday for how amazing my son with acc is doing but they have no idea of what we have gone through to help him to achieve what he has and the hurt, anger, pain, guilt, denial, etc that I experience every moment of every day and will continue to experience for the rest of my life! Its just so hard and the emotions themselves are exhausting enough! Sometimes I just want to sit, hang, watch tv. Sometimes I don’t want to be my sons therapist! When I get home for working all day, 5 days a week, sometimes I just want to sit and breath. Oh well. Unless you have been there it is so hard to understand!
Lisa, my daughter also has ACC. She will be 2 in April. No one I know can relate to me or our situation. My best friends have children and they say “oh she’s doing so well and your doing a great job” and they don’t have a clue. I love my daughter very much, but I hate hate hate that’s she can’t be a normal kid. It makes me so angry that she has to be delayed in development. She’s a lot smaller than kids her age and I get so tired of DREADING someone asking her age. When I say her age I ALWAYS get the “wow she’s so small” response. It makes me want to scream. Everyone tries to be hopeful, as do I., but she doesn’t walk or talk or crawl yet and when I see other kids her age running around, talking, and playing it makes me soooo sad. I hate that she can’t be experiencing those things. And I also feel like I have been deprived of those “first moment” experiences with her. I have to think “will we ever have a first word or a first step? Will she ever eat real food and not baby food? Will she ever be a normal size?” The constant worry!! I feel like I’ve aged 20 years in the past 2. The future is what scares me the most. I hope things get better from here. Thanks for this post. I needed this today! God bless
I can so relate to this!!! I have two children with additional needs..my daughter has dyslexia, dyspraxia and auditory processing disorder as well as sensory processing disorder and I have had so many battles, especially with school, because people don’t get that she needs support in order to reach her potential. My youngest has cerebral palsy, is on the autistic spectrum and also has sensory processing disorder which causes him to be extremely hyperactive at times and bounce off the walls. Yes he is mobile, articulate and can do many things for himself but he is exhausting because he has little understanding of danger and is so impulsive he often puts himself in harms way meaning that, even at 9, we still have to supervise and watch him as if he were a toddler. If I had a pound for everytime someone has said to me that it could be worse I would be a billionaire several times over..yes I know that thank-you very much but sometimes I just want to be able to get people to understand that it’s hard balancing their very different needs as well as trying to have time for myself so I don’t burn out completely!!!!!
Yes! It’s so important to find people who will really listen and really hear what it is you are saying when talking about the challenges you are facing as a parent in your situation. I am so late in responding, I hope you are doing well.
I’m right there with you. It IS hard. It doesn’t mean I don’t love my child, I DO love him very much. But I can’t pretend that it’s all sunshine and roses and a walk in the park.
So so true.
Your blog really touched me today. I am in day 42 after my daughter having multilevel surgery. I have not had 1 full nights sleep (when do I ever) for this whole time. My husband takes the weekends to give me a break from the relentlessness. (we have 2 children with special needs) I still hear her cry in the night (sometimes scream) Why this really touched me today was a very good friend called in this morning. 42 days/42 sleepless nights. I was just about to bed bath my gal and do her exercises (which are passive so involve me doing most of the work) My friend lay on my bed and watched me do all of that without offering to help (hoisting by myself – meant to be a 2 man job – physically exhausting), bedbath, exercises all the while lamenting about how tired she was! She has had a gloriously wonderful Xmas season, plenty of breaks from her NT kids, tripped all over the countryside! Needless to say I said NOTHING! It hurt! I have been surprised by who has stepped up during this time and who has walked away. More and more my closest friendships are with parents of children with special needs. My daughter is usually an active, independantish little girl and this whole situation has knocked us all for a six. We get casts changed next week and then starts 5x a week physio/swimming to get her back to walking. By the time she hits school she will be able to take 1-2 steps, this is a journey that will take 9-12 months to get back to where she was (but in better physical/structural condition. It is hard! I will be there for her in every way. But some days I just need to vent. Thank you for your article. and Thank you for listening.
I think sleep deprivation is one of the hardest things to go through and it sounds like it’s been a rough go with it there at your house. I, too, have been suprised by the different directions friendships have gone and new ones that developed as a result of all of this. I hope that sleep returns to your home soon. I just prayed for you and your family as you walk through the challenges this season and those in general you face. Thank you very much for taking the time to comment, your kind words and for sharing your experiences.