General chatter - Can I get a *real* conversation, please?




ebb&flow
12-22-2010, 12:19 AM
Without going into way to much detail, I'll say that I just want permission to feel how I feel. I want to talk about the disappointing things in life without someone trying to convince me that I'm wrong and that I'm giving up too soon.

I've referred to the fact that my son has non-life threatening chronic medical issues in previous posts. We see our specialists regularly and I thought it would be best to see them all on winter break from school so that he didn't miss school to see them during the school year. On the other hand, it gives me back to back opportunity for disappointment, day after day for two weeks, while we see everyone. Yesterday we had two appointments and they both contained bad news.

We've been doing this for five years. I just feel so alone sometimes. I just wish that I could talk to one family member or friend without someone trying to convince me that someday things will magically be fixed. I don't trust doctors blindly. We've dealt with out share of doctors and understand that sometimes, they aren't so accurate. On the other hand, I've read the available information and studies. I've done my research. I know that what they are trying to sell me on is basically a miracle, and those don't come along everyday.

For once I would like to have a conversation with someone and not be told that I'm giving up too soon. I'd like to feel and express my grief over another lost hope or dream without feeling wrong for it. Before you say that I need to talk it over with them, just understand that I've tried.

Sometimes people get sick and don't get better. It's not because you haven't tried hard enough, it's not because you didn't believe enough, it's not going away just because you pretend that everything is "fine".

I'm an emotional eater. I've eaten my way up to my high weight dealing with emotions with food. Pasting a smile on and playing the perfect mother of a sick kid and eating my way through it. Neither way has proved to be healthy for me and I just need a real conversation and a cry not cake with lots of icing.


Transporter
12-22-2010, 12:27 AM
Im truly sorry to hear about whats going in your life, I cannot relate to what you are feeling since i dont have children, you know whats best for you, sometimes the best thing is to let it out, and cry, and says whats hurting you, dont harbor it

Heather
12-22-2010, 01:15 AM
I hope you can do that here. I'm so sorry to hear about it. Sounds like you're going through something extraordinarily rough that no one should have to deal with. There's no easy way through that.


ladybug2008
12-22-2010, 02:12 AM
I can totally relate to what you are saying. Although I don't know your exact circumstances, I have a child who has problems that probably will not ever get better. Some things may improve, but realistically he will never be what you call "normal".

I have four children. He is 12 and I will probably always have to care for him in some ways.

Most days are good, but some can be really bad. My heart breaks for him when he is having a hard time. As a mom you want to change it, but there is nothing you can do.

If you ever want to chat, just message me.

ebb&flow
12-22-2010, 03:08 AM
Thank you ladies for your responses.

You're right, ladybug, most of it is about saving him from some of the heartache that I want to spare him. Some of it is the feeling of loneliness that I feel. I'm not comparing, but I see the squirm of my friends when I talk about our daily life and it comes no where near their daily life, but close to their fears. I feel lonely when family expect me to be positive, not talk about the struggle of daily life, and keep hope for a faith healing (literally) when I just want to talk about how tired and frustrated I am.

I've received the suggestion of support groups and we have other friends who deal with medical issues with their children. Their kids are terminal. How do you have that conversation? I know your kid is terminal or life-threatening (transplant list or terminal), but I feel frustrated with our situation which is not and which you would trade your situation for in a heartbeat.

We occupy a weird space and I know you guys can't really post a reply that makes it all better, but I feel like I am out there yelling "I'm here and this whole situation sucks and I want someone to witness that it does!!"

jules1216
12-22-2010, 05:53 AM
You definitely have my permission to go through the myriad of emotions that go along with. You are not alone in the world, many go through similar situations that are emotionally challenging.

My husband's cousin fostered and then adopted a baby that survived being shaken. He has thrived with her and is now a teenager but will never be normal, she goes through a lot of emotions including wanting to find and hurt his birth parents.

January of 2009 my Mom's simple biopsy of what was supposedly a squamous cell skin cancer spot that doesn't usual "travel" did just that...right into her saliva glands and lymph nodes in her neck. Chemo, radiation two surgerys, an experimental treatment that gave us hope for a few months and then a very terrible last two months before her death in May of this year. She was my best friend and it was so hard dealing with the mixture of emotions of the ups and downs.

A coworker's 16 year old son has just been diagnosed with Crohn's disease earlier this year...he made some of the same comments you are...he is wondering what kind of life he will have to look forward too, if he will be able to fulfill the goals he has for his future.

nelie
12-22-2010, 08:37 AM
I'm sorry you are going through this. Is it a common problem? If so, there might be support groups? Of maybe online resources that can help. I know we are a message board but there are tons of message boards out there and if your son has a medical issue, I'm sure there are other parents in your situation with a similar issue.

All I know is that you need to take care of yourself before you can take care of anyone else. :hug:

EZMONEY
12-22-2010, 09:01 AM
I am so sorry for your son and family for having to endure this :hug:

When we see people in pain, in ways such as yours, it does make us feel uncomfortable. It isn't that we want to feel that way, it's just human nature. When we first see people in various disabilities our first impulse is to look away, not out of disgust or to be unkind, but out of sorrow. On one hand we are so thankful that it isn't us....on the other hand it's why isn't it me? God only knows those answers.

However, when we get to know the person/family with the disability, we change. Other than your "normal" family tragedies of cancer and such my immediate family does not have those issues....but....all of us are affected with such issues with in-laws and friends. As you mentioned you are not alone in your circumstance, yet you feel alone in it at the same time. Understandable :hug:

People with compassion try to give others hope. Sometimes we fail to do it in ways that are not perfect. In my world, my beliefs, hope is what sustains us. Our hope is in the future. We believe in miracles. We believe in healing. We don't believe healing has anything to do with us and our efforts to make it come about.

In a perfect world a miracle would be a total cure. We do not live in a perfect world here. Miracles of healing come in many ways, giving us hope.

You are in a difficult situation, maybe as time goes on your family/friends will learn to "comment" differently as you share your days with them. You may need to take a different approach to the way you share to get the results you ask for.

It's going to be hard though I'm sure. True friends and family will always try to give you hope.

Prayers that reality and miracles balance in your life :hug:

joyfulloser
12-22-2010, 09:15 AM
Yes, you are right...sometimes things aren't fair...they don't "get better". But please take comfort that we have a promise...a promise to never have more than we can endure placed upon us. Please let this promise strengthen you do endure your road ahead. It has helped me to endure the untimely loss of my brother just 2 months ago.:hug:

patchworkpenguin
12-22-2010, 10:36 AM
I have a few people in my life that when I have a problem I go to and just want to talk it out. I don't even finish my first sentance and I get interuptted and told how to 'fix' my problem, when they haven't even heard me out. I know they mean well, but it drives me crazy.

Sounds like you are dealing with the same thing. In a lot of cases they may just not know what to say, or what to do to make you feel better, and they don't realize that listening is all it takes. {well, maybe a hug!}

we are always hear for you.:hug:

midwife
12-22-2010, 10:39 AM
I would second a support group. My friend desperately needed one for issues her kid has, and there wasn't one, so she started one. Maybe one of the specialists ya'll see could hook you up with people in a similar situation or even start a support group within their office?

Vent away here, vent away here. You are not alone.

usam
12-22-2010, 11:02 AM
I'm so so sorry you have to go through something so emotionally draining. My sister gave birth to a little girl with Marfan Syndrome in 2002. We had never heard of it and so immidiatelly went on a search to find answers. She had the worst form. No muscles in her body could function, heart problems, could not walk, but she could talk and was very smart. She actually spoke four languages fluently at the age of three! She gave our family unimaginable love, sorrow, joy and saddness. She was our little angel and the only child in all our family. So we spoilt her. She underwent numerous surgeries and pain.
Sadly in 2006 she suddenly passed away from blood poisoning after a very succesful heart operation in Israel. We were all devestated.
It makes me so angry when people say "well, she was sick so you expected her to die" No, No, you never EXPECT your child to suffer or to die, nothing will EVER prepare you for such a loss.
When we have babies we all want them to be happy and healthy and we expect that. But sometimes it doesn't happen that way. My sister has never been the same, her husband left her three days after the funeral and to this day she struggles with two jobs to make ends meet and pay all the medical debt. Life is not fair.
I'm not trying to make things worse for you please understand that you are not alone. People always try to fix things or tell you there are people worse than you. But you are the one suffering, you are the one dealing with the heartache everyday. Nobody knows how you feel or can tell you how to feel. I never talk about it because people will give me the same response, and I don't want to hear it.
But you can express yourself here, we are here for you and understand how you feel. Never underestimate your power. I still have faith, I still beleive in miracles because there have been many in my life since then. But there is pain too and we must deal with it.
Food is not the answer my dear, it will not solve anything. My sister and I are both emotional eaters but we have found that working out helps. We have to heal within to heal on the outside.
My heart breaks for you and I hope you keep posting because when you write things out it does help.
((((((((((((((((((HUGS)))))))))))))))))))))))))

stargzr
12-22-2010, 01:07 PM
I completely understand how you feel. It seems that most people these days want to hear that everything is going to be ok and sometimes... I do too. But there are issues and situations that I'm not looking for "oh, it'll get better"... I just want to tell it like it is and be able and "allowed" to speak my mind for what it's worth. Like you said, not all things can be fixed and some stuff won't magically just go away. In these instances we just need someone to listen and not judge. Just rest assured that there are other people out there who feel this way and we will listen and support, no sugar coating necessary. =)

ebb&flow
12-22-2010, 01:11 PM
Thank you all for the encouraging words and permission to vent. I feel a little better after some sleep. Sometimes fatigue just brakes down my coping.

EZ- I understand hope and I still have it. I don't think I could make it without hope. It changes, though. In the beginning I hoped that we would find a diagnosis. It took a long time because his main issue was a very rare disorder. I found after our diagnosis that I was educating our doctors on his disorder rather than the other way around. Our routine doctor visits would be full of medical students in a small little office. There wasn't a standard, accepted treatment, and only a handful of doctors were studying it. Some things have changed in the last three years. I've been able to walk into a doctor's office and not have to tell them what his disorder is and reschedule an appointment when they know as much as I did about it. Or I'm bringing them photocopies of medical journal articles about why their treatment isn't a good idea for us. Now there are two widely accepted treatments to manage symptoms. I have hope that one day there will be a cure discovered. I have hope that in the meantime he will be happy in his life despite his medical issues.
I just can't accept that I'm not even allowed to discuss our doctor visit because supposedly that is creating doubt and that doubt is the reason their prayers for his healing are going unheard. I can't accept that in just talking about daily life, it means I have given up hope for his future.

I understand how uncomfortable it is for others who don't live it and how it's hard to know what to say. I mostly try not to bring up the harder parts of our life and really try to keep us looking as "normal" as they are, but sometimes it just is what it is. I try to be understanding and not, but I think that leads to a little of the isolated feel.

Nelie and Midwife- As I said above, he does have a very rare disorder that we deal with everyday. He also has a couple of common issues that are at the severe end of the scale. They all combine to put us in the "worse case" category. Like he has food allergies, but he's allergic to most grains (rice corn soy oats) all meats and tons of other foods, he used to get hives just from touching the tables in food courts at the mall etc. He has environmental and seasonal allergies where he's allergic to most things inside and out (most grass, trees, dust mites mold and mildew. Whenever we move he becomes allergic to that region's trees and grasses. We've been told by several doc not to get a pet because it's just one more thing to become allergic to. He's on high doses of two allergy meds and still can't breathe well most days of the year- constant runny nose, sneeze cough.) Perfumes cleaning supplies and smoke make it difficult to breathe. People think they know what we mean when we say he has allergies, but it's different than most people have seen. Then you add that with his other disorders and the rare one.

We can't find enough people like us for an in person support group, but we are on support forums were we share some similarities with those families (we both have chronically sick kids or we both deal with feeding tubes). We do have a patchwork of other friends across the country from our hospital stays. We're just in a bad time to gripe about our petty issues with those friends as one family is back in the hospital, one family is recovering from a heart transplant, and one family has a new and terminal diagnosis.

Again, thanks for the support, sharing your stories, and just hearing me. I do feel a little better today and managed to only eat few chocolate rice cakes and had a large glass of wine rather than ordering pizza or buying some chocolate etc. I feel like I can get back on plan today and I'm going to plan a fun day today rather than our daily routine. I think we need a break to regroup.

sun
12-22-2010, 01:22 PM
ebb&flow OH my Sweetie...I am so sorry this is happening to you. You have all my love and hugs. I know its hard when you have a sick child and are faced with a life long struggle. My daughter has Cerebral Palsy..hearing and sight problems due to the negligence of a nurse and I hate when we learn new negative news and all my family is like well lets pray to God and she will be alright. I love God and believe in miracles but I also believe that not everyone is so lucky and it has nothing to do with how hard I pray. Its reality. there is so much depression and anger...and its normal and alright to feel it. I need to go through all of this to get through the day and to get what I need for my daughter. It doesn't mean I love her any less, but it is a loss for her and me and my husband. She was normal and now she is 2 and can't control her body or eat or talk and that is the reality and I don't want to hear how things will get better. They will never be normal so its ok for us to mourn that. You can always talk to me if you like. PM me and I can send you my email. once again hugs and kisses!

Also Lali is on a Gtube
I had gained about 40 lbs when I was pregnant with her but after she was born and we were dealing with so much stress..hospitals etc I put on another 15! I was huge and it is taking me sooo long to loose it. I have basically only lost 10 lbs this whole year. She has been sick alot and I just am having a hard time controlling my eating habits.

kaplods
12-22-2010, 02:31 PM
When people don't know what to say, they end up saying what they think they're supposed to say, or what they've heard other people say in the situation. And in many situations there is no right thing to say, so no matter what they say, it's probably the wrong thing. And to make it more complicated, most people don't know how to say nothing (and even that can be the wrong thing too).

It's almost impossible to give just the right amount of empathy, sympathy and support. Even a person who has been in your exact shoes, may deal with the situation differently than you do, so even their advice and support can be too little, too much, or just entirely off base.

You might try telling people what you need. Obviously the people with the hopeful comments think you're needing hope, so that's what they're trying to give you.

The problem is no one knows what you need. No one can know what you need, even if they're in the exact same situation. People can only give what they think they would need in your shoes, but they're not in your shoes, so they can't get it right.

You could try telling them what you need. If you can say, "what I really need is for you to listen to me vent without feeling the need to give me hope, fix it for me, or tell me what I should or shouldn't be doing" you might find someone willing to just listen. By telling people what you need, some (but not all) will be willing to try to provide it (though they still might get it wrong).

It may sound lame, but I strongly recommend a journal, because it allows you, in a small way to be your own support. I'm not saying it replaces the need for friends, family, and counselors. I recommend you continue to seek it out, but in addition to all of those things, you may find writing to be therapeutic, because you can communicate with someone you KNOW understands you - you.

EZMONEY
12-22-2010, 07:28 PM
...............EZ- I understand hope and I still have it. I don't think I could make it without hope. It changes, though. In the beginning I hoped that we would find a diagnosis. It took a long time because his main issue was a very rare disorder. I found after our diagnosis that I was educating our doctors on his disorder rather than the other way around. Our routine doctor visits would be full of medical students in a small little office. There wasn't a standard, accepted treatment, and only a handful of doctors were studying it. Some things have changed in the last three years. I've been able to walk into a doctor's office and not have to tell them what his disorder is and reschedule an appointment when they know as much as I did about it. Or I'm bringing them photocopies of medical journal articles about why their treatment isn't a good idea for us. Now there are two widely accepted treatments to manage symptoms. I have hope that one day there will be a cure discovered. I have hope that in the meantime he will be happy in his life despite his medical issues.


I can see some of those miracles I was talking about in the above statement :)


I just can't accept that I'm not even allowed to discuss our doctor visit because supposedly that is creating doubt and that doubt is the reason their prayers for his healing are going unheard. I can't accept that in just talking about daily life, it means I have given up hope for his future.

Obviously I have no idea where your "prayer' information is coming from but I can tell you it is wrong! Jesus gave us the perfect prayer to pray in The Lord's prayer...."thy will be done"....One of the biggest problems we have in our prayers is we want those miracles to be "Santa Claus" like in answers....the bigger picture, that we don't see is the Miracles God is doing working through us and your son. It is only through hind-site, sometimes, that we eventually see some of the answers to our prayers. If you didn't have the "whys and what ifs and how comes" running through your head you would not be human, you would be a robot.

I understand how uncomfortable it is for others who don't live it and how it's hard to know what to say. I mostly try not to bring up the harder parts of our life and really try to keep us looking as "normal" as they are, but sometimes it just is what it is. I try to be understanding and not, but I think that leads to a little of the isolated feel.
............................


Most of the time when we are in pain for whatever reason we usually "share" that with others, as you are here....it comforts us. Sometimes people do get tired of hearing it, maybe not so much in meanness but in the been there-done that....any information you get is new and maybe exciting or maybe troublesome....your friends and family, although concerned, can't feel the same because it is not their pain.

Not trying in any way to compare my situation to yours...not close...but I can still remember 20 years ago when I went through a very emotional time with my divorce, for several years surrounding that time it seemed it was all I could talk about with friends...I found them turning a "deaf" ear to me at times....even when I had new information to my story....years later it dawned on me that it wasn't that they didn't care it was just that I had burned them out. I will never forget how many times they "saved" me in their own ways.

I have no idea where your beliefs/faith lies but don't ever think you are not praying good or hard enough! God heard you the first time and knew, before you even asked, what your desire was....He knows your heart....:hug:

shannonmb
12-23-2010, 07:47 AM
I really like what kaplods had to say on this. You need to get some of the support people in your life on board with what you REALLY need, and the only way to do that is to tell them what that is.

What I am hearing from you, is that not only are you taking on the challenges of your situation, but you are also caring for everyone else around you. You are trying to spare them the hurt of the situation by trying to put on your happy face all the time, keeping the positives at the forefront, and stuffing the need to just let it all hang. That's what to do in polite company, but girl, you NEED someone in your life who you can get really, REALLY MAD with, really, really SAD with, really, really BAWL YOUR EYES OUT with, someone you can BREAK THINGS with. I don't know who that would be for you, but so far it sounds like you are even trying to spare the other families you've met in support your feelings, because they have enough problems of their own to deal with. :hug:

I am glad you are here venting, and I'm sure it helps, but I do think it would be helpful to really be able to get this stuff off your chest on a regular basis. Maybe a therapist or a counselor? Then you will know you are paying that person to really HEAR the REAL DEAL, and you won't have to worry about THEIR feelings at all.

I'm a nurse at a children's hospital, and I have come to see families with chronically ill children as this special sorority of people who the rest of the world doesn't even realize exists. I will never understand, no matter how many families I encounter, and no one else will either. :hug::hug::hug:

ebb&flow
12-23-2010, 01:43 PM
EZ- thank you and I understand that now. It probably would have saved me a lot of heartache and feeling I was a failed Christian if someone had said that to me before. I found another church community and a pastor who has been a great help. Of course I just have to agree to disagree with family who still hold those beliefs.


I really like what kaplods had to say on this. You need to get some of the support people in your life on board with what you REALLY need, and the only way to do that is to tell them what that is.

What I am hearing from you, is that not only are you taking on the challenges of your situation, but you are also caring for everyone else around you. You are trying to spare them the hurt of the situation by trying to put on your happy face all the time, keeping the positives at the forefront, and stuffing the need to just let it all hang. That's what to do in polite company, but girl, you NEED someone in your life who you can get really, REALLY MAD with, really, really SAD with, really, really BAWL YOUR EYES OUT with, someone you can BREAK THINGS with. I don't know who that would be for you, but so far it sounds like you are even trying to spare the other families you've met in support your feelings, because they have enough problems of their own to deal with. :hug:
:

Thank you and Kaplods for weighing in. I think you and EZ actually highlighted part of the reason I am have difficulty with friends and family. It's really not because I've not asked for what I need. There is the issue that they love both me and my son and want to make us feel better by saying it's going to be okay (even if it's not). They don't know what to say or it's just not something they can handle (which is okay, but I can't talk to someone who makes me feel worse about our situation especially if I'm talking about something I perceive as progress or a good day). On the other hand, with some family I am just running into a wall because the really really believe that if they listen to the info from the doctor visit or information about what we are working on or what we are struggling with that it is creating doubt and they are doubting God's ability to answer their prayers. "We've prayed about it and gave it up to God. There's no reason to listen to what earthly doctors think may happen. I've talked to the *real* doctor." It's not a matter of them not knowing what I need. It's that my needs are in direct conflict with their needs. I'm not mad at them for it, because everyone gets through it how they can. I am upset that it leaves me without the support of the people who I am closest to. Who you naturally look to in difficult times.

It will be fine. I'm just in a difficult moment and it happens to coincide with a time in our lives where my hubby (main support) is deployed and doesn't need to hear me crying and my usual supports are in more need of support than I am. The lack of support by family and the people I see daily is just chaffing more for those reasons. All of those situations will change. Thankfully, sometimes it's for the better: our friends with the little girl with the heart transplant are looking at going home soon if things continue to go well (after months and months in the hospital a family can finally be together again. They have two older kids at home who really need their mom and sister back. Also, a little girl gets a shot at a healthier, longer life.)

MadamButterfly
12-23-2010, 02:03 PM
Hi Ebb&Flow

I can't say I know how you feel as I am not standing in your shoes. I do know life is not fair, never has been and never will be. I do however empathize with you. I work in a memory care unit and one day a daughter opened up and spilled her guts, tears and anger. I listened and felt her pain. I knew I couldn't say or do anything to make her feel better so I just let her vent. In the end I feel she was basically saying, this really sucks and I can't do a D**$( thing about it. I think she just wanted to be able to vent to let "somebody" know that it was unfair and she hated the situation.

I think this may be where you are coming from, you just want to vent and let the "world" know it sucks, it's not fair, and you hate the situation.

I am sorry you are going through this, I can't say or do anything to fix it. All I can say is try to enjoy the times you can, hang tough and know there are people out there that empathize with you and maybe even someone that understands. We are here for you!!

Diane

LolaCrane
01-09-2011, 08:03 AM
Ebb and Flow - I'm so sympathetic to what is going on in your life, but feel all the responses to your post pretty much mirror any advice I might give. Not being in your shoes, it would be hard to presume I could add to any of it. Just remember that though we over eat for "comfort", we are actually punishing ourselves with food. I find that thinking this way, instead of in terms of "rewarding" myself with food, helps me stave off the longing for that bag of chips, or pint of HaagenDazs. Your emotional eating is all caught up with your son's illness. Is there any time that you can have to yourself? To take an hour to go for a walk? If so, try using that time just for YOU with a view to running interference with the eating patterns you've developed. I find that if I've just walked three miles, I'm far less likely to sabotage my efforts. WHile I realize you son must demand all your attention most of the time, I hope that there is someone who can "spell" you now and then so that you can take the time for yourself you so hugely deserve.

losermom
01-09-2011, 01:19 PM
Ebb and Flow, I can never know what you are experiencing. I'm sorry that you have to deal with not only your son's illness, but the inability of others to just listen and support you. If you were here I'd just want to give you a hug. :hug:

RoseRodent
01-10-2011, 05:54 AM
I have had a long journey over my own situation rather than one for children, and I think it is that bit tougher for kids because as mum you want to cure everything, take away all the struggles and the hurt and you can't.

I've spent years trying to come to terms with my various illnesses, even finding out what I have and then going from there. I've had people tell me not to "give in" to it, to carry on struggling 2 steps on my feet in great pain rather than get somewhere in a wheelchair, cos the chair would be "giving in", some kind of moral horror at sitting in a wheelchair when you can still get up, no matter how pointless your walking has got.

I have had pressure to try every crazy treatment that comes along, and if you don't throw heart, soul (and money!) at every single one you "don't want to get better".

There may be a future we don't know about, maybe one day, in the distant future, my condition, your son's, they might cure it, they might find some ways to make it just that little bit better, but you know what? That is a maybe that might happen some time in the future. Today is definitely happening, and it's happening right now. If today is hard then it's hard. And you do have to look to the long-term as if this will be forever, if I didn't put in a ramp just in case I maybe one day walk again then how would I get my wheelchair out today?

A friend of mine wrote this, which I think is incredibly useful for people who don't understand the acceptance of the here and now of an illness, condition or disability:
http://batsgirl.blogspot.com/2008/04/gorilla-in-your-house.html
(The NHS is the British healthcare service)

Another thing that you may find interesting and useful is that research (sorry I don't know which one, my brain is not working too well lately) has found that people who are having a hard time, right up to those with clinical depression, benefit much more from being allowed to moan and complain. People always feel they are doing us some kind of favour to say we should stay positive, be optimistic, think of the future, have faith, put it in God's hands, it "could be worse", etc. And all the poor person wants is to "let it out" to say you know what, I had a terrible day and now I am going to be cross about it for a while. If you don't spend some time to be cross about something that makes you cross then you just suppress it till later and it comes out in other ways - such as addictions and destructive behaviours. People who think they are doing a good thing for you reminding you to cheer up are not at all, they should get on board with you and agree that you are quite entitled to be cross. Heck, close friends and family should say "How can I help?" :devil:

I think there is a strange sense of denial that applies with children too. My daughter has a significant hearing loss, but we don't fit in with the deaf children's society cos she's not as deaf as their kids and everyone starts comparing. Heck, without hearing aids she's more deaf than their kids are with their aids and implants on, but they don't see it, they think cos she doesn't have a hearing aid (it won't help) then her hearing must be just fine. She's had a number of developmental issues and when we have tried to chat to any other parents about it people have always wanted to go into denial. Oh no, she's not developmentally delayed, look at her crawling (when she's 22 months old, I don't think it "proves" there is no delay at all if she can only crawl!!) or when she's producing a single word of fuzzy speech at 3 years 10 months people felt the need to point out to us every time she spoke to prove there is "no problem" even though she was in speech and language therapy for her officially assessed speech and language delay - on assessment she scored nothing for her speech and understanding, but as soon as she opened her mouth to say anything there was a chorus of denial from other parents and never mind that a speech professional had assessed her as delayed.

I don't know what that is, maybe they are so scared that if their kid were deaf they'd be in knots about it, where for us as a family of hearing aid users it's not a big deal, it's just factual. I couldn't speak to the families at the "regular" mother and toddler and when we were sent to a special needs group then like you we didn't have anything in common with these people whose kids were needing 24 hour care, buckets of surgery and might not survive. I wonder if you are also running into the denial specialists who just don't like for there to be anything "wrong" with children, even if it's staring them in the face. Or who think that by commenting on something factual you are saying there is something imperfect about your child, you are somehow putting them down to say they are deaf (local policy is to use "deaf" for all levels of hearing loss). They recoil in horror that you could possibly "say that about your child" - what do they want you to say? I think they want you to be in denial too, quite honestly, it helps them.

I think I mostly waffled on like an idiot there, tbh!

dcapulet
01-10-2011, 06:33 AM
:hug:

ebb - I work with families like yours, and first let me give you my warmest wishes. I understand other families would like to have a child with a non-terminal illness. That doesn't make your struggles any less real or important to you. It's hard altogether, but when it's a rare condition there is limited treatment and established support networks available. I'm glad you've come here to express your emotions -I hope it can be the outlet you need.

All the best to you and your family.