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Old 12-22-2010, 12:19 AM   #1
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Default Can I get a *real* conversation, please?

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.
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Old 12-22-2010, 12:27 AM   #2
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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
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Old 12-22-2010, 01:15 AM   #3
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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.
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Old 12-22-2010, 02:12 AM   #4
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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.
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Old 12-22-2010, 03:08 AM   #5
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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!!"
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Old 12-22-2010, 05:53 AM   #6
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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.
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Old 12-22-2010, 08:37 AM   #7
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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.
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Old 12-22-2010, 09:01 AM   #8
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I am so sorry for your son and family for having to endure this

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

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
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Old 12-22-2010, 09:15 AM   #9
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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.
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Old 12-22-2010, 10:36 AM   #10
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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.
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Old 12-22-2010, 10:39 AM   #11
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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.
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Old 12-22-2010, 11:02 AM   #12
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Default I can relate - sort of.

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)))))))))))))))))))))))))
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Old 12-22-2010, 01:07 PM   #13
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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. =)
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Old 12-22-2010, 01:11 PM   #14
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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.
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Old 12-22-2010, 01:22 PM   #15
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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.
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