How are you coping?

**Can I?** · 04-10-2007 16:57

It's easy to talk about our kids and to find out how they are coping with each new situation, but what about the families and parents? How are you going? Physically? Emotionally? Financially?

**Nowhere** · 04-10-2007 17:35

Its funny thats never a question us special nees mums seem to ask each other, apart from when things are REALLY bad, what a good idea for a thread

The past two weeks have been hard for our family as mikenzee has picked up another 3 diagnosisis and more medication, which i know isnt a big deal but Im just over it at the moment, we was also told that she ivery likely to have her feeding tube forever and likely never eat or drink

so i was sad for her, we also getting ready for hr next procedure next week she is having a tube put into her intestines which is what she wil be fed thruough as G tube feeds are not working, those of you that know about tube feeding she is getting J port added to her G tube and then after a few months she wil have a seperate J tube which means yet another operation, Im dreading the operation as nothing is symple with Monkey and she always has cardiac and respiratory issues after surgery which isnt nice, and we always end up staying in longer then usualy expected

We are seeing genetics next week wich im looking forward to as i would love to know WHY kenzee has so many isses and her peadiatrician is the same he thinks there is definately some sort of underling problems we just dont know yet, So i m both looking forward to and dreading it at the same time

What im finding hard at the moment is parents of totaly healthy kids, telling me oh well there others out there worse of then her, I total y realise that and i feel for those kids and parents i really do, and if it came from another SNM i would totaly welcome that it as they actualy know what they are talking about, but from mums of healthy children its really starting to get to me, Is thats bad, is it just me or are you over hearing that as well, I do know there are worse kids out but it doesnt make Mikenzees situation any easier

Mikenzees diagnosis to date are
Hypertonia
hypermobile joints
Laryngotraceomalacia (operated twice) stil having airway issues
reactive airways
Apnea
heart murma, enlarged heart
enlarged liver but functioning well
nutrapenia
Gasrto oesophical reflux disease
alergic Gastritus
alergic oesophagitus
alergic Colitus
malabsorption syndome
protien intolerace to all food protein
curently investigating seizures

Wouldnt change her for the world but as she is the most beautiful girl ever

Hope everyone is doing well, look forward to reading everyone elses storys

**kiwibird27** · 04-10-2007 20:37

How do I cope????? Don't really know,I'm lucky, My daughter has a diagnosis and all her teams in place and she is at home and not still in hospital, however the healthier she gets the sadier I become, I realise somewhere between living in hospital and dealing with specialists I have lost myself and the world just seems a little black...I guess it's time to heal myself now, don't really know how to do that??!!

I tell lots of people my DD's story , have learn't only to tell half of it now, and I watch their faces drop and their lips quivver and they tell me how strong I am and how lucky Megan is to have such a wonderful mother, They usually look at their kids then thanking god they are healthy and then often apologise and look at DD with a sad, no hope kind of look..... Relatives ask if she is lifting her head up yet and why not when i say no.....don't know what part of "probably never walk" They didn't get, I have become very clinical about life and view things so differently to once before, Having a child thats alive and happy is more important than anything, If I have to tube feed her and carry her till the day she dies (whenever that is) I don't care, I am forever changed and I thank her for that. Only other mums with serious illnesses get that.
Sometimes I am drowning in sadness then I see her and get what life is all about, Financially, we will be broke forever i think cause only 1 of us can work, We can't just go away on holiday like most people ... everything needs to b planned

But I have an alive happy child with a rare genetic condition, she is here for a reason, I may figure it out one day!!!!!

Mikenzees mum, has she been tested for CDG ??? Transferrin Isoforms tests??? I think I asked u before can't remember

DD.............

Liver Disease
GORD...resulting in a fundo
Abnormal kidneys... leaks protein
Pericardial effusions resulting in a window
Global developmental delay
Hypoglycemia
Delayed gastric empting...we think???
Moderate hearing loss
short sighted

Gastrostomy.... starting to lick solids!!!

**punkbaby** · 04-10-2007 20:41

Honestly some days i feel like going and killing the guy that did what he did to us but i have to remember that ds is here and his alive and his problems by far are nothing compared to others out there! I dont know how i would cope and i guess i dont know how i have coped to get where i am but all i can do is stay positive and hope for the best

**Can I?** · 05-10-2007 14:26

I guess it's time to heal myself now, don't really know how to do that??!!

That's a hard one hey? As you said, you are forever changed - so its not like you can go back to being who you were. I have moments of drowning in sadness too - when something that is so simple for everyone else is so hard for my little guy - but there are moments of pure radiant sunshine too.

What im finding hard at the moment is parents of totaly healthy kids, telling me oh well there others out there worse of then her

I guess it's just another case of not knowing what else to say. People want to say something positive that will make you feel better (regardless of whether or not it actually does make you feel better, or even whether you want to feel better) and that's the best they can come up with at the time.

I'll write about how we are going since I asked you about yourselves.

Physically - we are exhausted. DS doesn't sleep through the night (he is 5) and is often awake for up to 2 hours in the wee hours of the morning. But aside from that we are well.

Emtionally - pretty good at the moment. We have had some worries with the possiblity of there being a physical cause for DS autsim, but generally ok. My older son is having a trouble with his brother atm. It is hard for him to accept that his brother gets special treatment even though he understands why.

Financially - we are broke and really I need to go back to work, but I should be able to get into some stuff next year when DS is in school full time. I know he will find the transition difficult, so I need to be home at least for the first few weeks until we see how he will go.

I'm so glad to see that everyone is coping, even if they don't know how. Part of it is a simply a matter of having to I'm sure.

for all the special mums and families of special kids.

**Duchessa** · 05-10-2007 14:32

To all of you.

Can I? you have such a wonderful attitude. Truly inspirational.

**Can I?** · 05-10-2007 16:27

Can I? you have such a wonderful attitude

Nah....mostly I'm grumpy and whiney. I will have to think up a new excuse for that once I can't claim to be sleep deprived anymore. Any suggestions anyone? I would hate to have to admit that that is just how I am

**forbetoel** · 05-10-2007 16:36

While I don't have a special needs child, I would like to send you all big

Two of my friends have children with downs syndrome and they are the most gorgeous little boys on earth, both absolute gifts to their parents, one of them has had quite a few operations on his heart, and both of my friends do wonderful jobs. TTheir boys may have special needs, but are more special because of it. In a world that is increasingly only willing to accept societies warped version of "normal" it is so lovely to see mums around who are loud and proud of their gorgeous children with special needs, it is these children in all honesty that help make the world a more colorful and loving place to live in. Well done to all of you, I can not even begin to understand the hard work you all put in, but I do know that as a parent, we do what ever we can for our children.

**kiwibird27** · 05-10-2007 20:05

I went back to my old job for 6 months and now realise it's not my career anymore, that sounds weird but everything is different now, not for the worst just different. You just kinda have to feel around in the dark for awhile i guess until u hit a light sitch?????

**flyawayfree** · 07-10-2007 14:56

I'm not coping all that well, but just do my best and solider on. I find it really hard because despite the tests there has been no actual diagnosis of a condition. All of my friends say things like, 'he'll get there when he's ready', or 'there doesn't seem to really be anything wrong with him', and they just don't seem to understand. I love my friends though and it's not their fault, they just don't understand...

Where I am living, there are no support groups around, and I feel like asking for help is admitting that I'm a failure. My partner tries to help, but he cops all my frustrations, and sometimes I am ashamed to say it, but my DS does too. I don't yell or scream or anything like that, I just become detatched, and that can't be a good thing...

My DS has a development delay, 15 months but not walking or crawling. Has been able to sit up since 8 months, but just l;earnt to do it himself two days ago.
We have been told his brain is 4 months smaller than it should be. And he has also been diagnosed with seizures. We are meant to be going to physio and ealry intervention, but EI always rings up and cancels, and the physio has just quit. So we really don't get the help we need....

Despite all that, I know I am lucky to have a gorgeous son, even if he has special needs...