Feeling very sad and lonely...........

[will&samsmum]

I'm feeling very sad and alone today. My DS has a rare brain condition which has lead to complex epilepsy and developmental delays. He is 20 months old and has the most beautiful gentle nature. They tell me not to compare his progress with that of a "normal" child because William is William. I try my hardest not to compare but I still find myself comparing. William was diagnosed with his condition at 10 weeks of age and we have been working our buts off every week since then with Physio and Occupational Therapy. He has come such a long way and I am so proud of his progress. Today we were told that our niece (8 months old) is walking.......and that is just wonderful for her....I am really happy for them. William is nowhere near walking and ever since I have come home I can't stop crying. It is so hard sometimes. We have just finished having one whole month off of all Therapies and hospital visits and we are due to start again next week and to tell you the truth I just feel like running away from it all..........this past month has been the first time since William was diagnosed that we have been given time off....at first I was very unsettled about it but after not doing anything for a month it feels "nice and normal". It sounds really bad but I don't want to do it anymore...............but I know I have to. We have just found out that I am pregnant again and we are very happy but I am also very scared about all the "What ifs". Williams condition is not genetic and it should not happen again but it is still very scary. William can sit up by himself....only if put him there and I am really proud of that......I just want it all to stop now............but I know it will not. How do you not compare????? My son has taught me how to be a better person and I have learnt so much from him and I love him so very much. I don't want to have to wake up one more morning and give him all the medication he has to have................but I know I have to. I just want to wake up and it all be gone away. I don't want to see another seizure ever....the way his little eyes roll back in his head.....the way his body shakes.........it just breaks my heart. I know I sound terrible........I don't mean to......he is my world and I wouldn't change or swap him for anything. I just can't stop crying. They have started to get me used to the idea that maybe he will need a wheel chair...........I pretended it didn't matter in front of all the Doctors but it is breaking my heart..........realistically I know that is not the worst thing in the world and that if that is what he neds to get around then thats ok but I am having a hard time beng logical at the moment. I know that I am very lucky and that there are heaps of worse conditions out there than the one William has but I am feeling really down and hollow at the moment. William has a standing frame and he stand in it 3 times a day and they are hoping that will help strengthen his legs. I don't want to start the hospital ride again.......every week Neurologists, Physios, OT's, Speech Therapists, Paediatrician, Eye & Ear doctors etc............I can't get my head around it at the moment.....it is all so overwhelming.........this is not like me, I have been charging through it.....I think it is because I have let us both relax so much over this past month.......for a brief moment I allowed us to feel "normal". I wish I could stop crying!!!! Anyway, thanks for listening. Take Care.Emma

[♥Heaven Sent♥]

Hi Emma,
Mayby you are just feeling this way because you are pregnant i know i was very emotional and felt alone aswell just a couple of weeks ago and thought i had PND.I am here if u wanna chat *hugs to you*
Jaclyn

[draught]

I can't think of anything to say that will make you feel better but want you to know that you have been heard, and I am thinking of you. Take care of yourself too - it is tiring being pregnant when you already have a baby, even before you have all the treatment and appointments that you and William need to go through each week. Please make sure that you get to take some time out for you - even if it is a walk around the block on your own each night.

[Refresh]

My son has taught me how to be a better person and I have learnt so much from him and I love him so very much.

That is beautiful:)

[Supermum]

Emma - so very sorry you are sad. Your story brought tears to my eyes so I can only imagine how you are feeling. You don't sound terrible at all ... you sound human. You are a mummy ... and from the sounds of it a wonderful one. Your life is not simplistic like most of us and it must get tiring, tedious, emotionally and physically taxing - especially when you're pregnant. I bet you have people asking you all the time "How do you do it?".... well what's your alternative? William needs you.

I don't have any answers for you but sincerely hope that every step for you and your family (esp William), is a step forward .. however small.

Before you were conceived I wanted you
Before you were born I loved you
Before you were here an hour I would die for you
This is the miracle of life.

Hugs to you Emma.

[bubbles28]

Hi Emma,
I just want to say how brave you are and what a great job you are doing with your bub. It must be so hard, I can't imagine.
So you have any family members that can help you out or give you a well deserved break? You really need time for yourself too as you are pregnant and feeling down.
I wish you well and please take care of yourself.
Hugs
Tina

[pegasus]

Hi Emma (fancy meeting you here)

Again - congrats on your pregnancy and yeah, I guess sometimes those pesky hormones bring on the waterworks more than other times - I find myself crying at what seem like silly little things - not saying that's it, but certainly may be something adding a bit extra.

From what you've said in the other thread - it's obvious that you love your william to pieces, and that you do everything in your power to give him the best start to life. Having a child with special needs is a special calling and no one can say they know exactly how you feel about what's going on in your life. Guess the best we can do at the moment is to let you know we're thinking of you and my thoughts are with you. Fantastic that William has been seizure free for nearly a month and hopefully this will give him some time to start moving forward a bit in his milestone achievements. I've got my fingers crossed for you.

Thinking of you and William:)

[will&samsmum]

Thank you all for your wonderful support and kind words.........I'm sorry it has taken me so long to respond I have just been keeping to myself for awhile.

Jaclyn - I think a little of it is pregnancy hormones and I hope that settles down soon. Thanks for thew hug.....I really needed it.

Draught - Thank you for hearing me. Sometimes just being heard is what I need. I have started going for a walk at night by myself and I have found it very beneficial....thanks for the tip and your kindness.

Ffrenchstar - Thanks for your comment....he is very beautiful....such a gentle sole.

Supermum - thank you for your kind words and support....as well as the beautiful verse......your kindeness helped me alot.

Tina - Yes I do have alot of family support around me......they all want to take william constantly but I have a hard time leaving him....just in case he has a seizure....even though I know that they know what to do I am still scared to leave him.....I have to work on letting go.....baby steps!!!! Thank you for your thoughts and kind words.

Veronica - Thank you for your constant support and kind words....still no seizures!!!TOUCH WOOD!! Talk soon.

Mrs Casper - Thank you for your advice on Respite Centres....I will look into these....are they run by qualified nurses or medical people???? Thank you for your kind words.


You all helped me so much I thank you from the bottom of my heart.

Big cuddles to all of you and your beautiful children.

Take care
:) Emma

[Foxymoron]

Emma ((((((((((big hugs)))))))))))) to you.


I completely understand the need to just be heard sometimes. It's very healing to be able to get it all off you chest. We can't be superwoman all the time, and it does make you sad to see other children growing and doing all the 'normal' things.
It sounds to me like you have been on a whirldwind of appointments and so busy looking after your son that you have only just started to process it now you have time to rest a little. You have every right to fall in a heap and acknowledge your sorrow, and all those tears are part of that.... You need that release.
Have you subscribed to the association for children with a disability? They have a monthly magazine and sometimes they run workshops about dealing with diagnosis. It's a help sometimes just to be in touch with people with similar issues.

[fAiRyDrEaMs]

Hi emma.

(((hugs)) to you.

I think the girls above have offered some great advice!!

I have a brother and cousin with CP, and I understand that it can be a struggle sometimes..


I wish you all the best!

smiles,
alicia

[lukaelmo]

He is 20 months old and has the most beautiful gentle nature.

I hope that when little dude gets to William's age, I will be able to say this of him. I am sorry you are feeling sad, I am feeling sad with you right now.

[Peaceangels]

Emma, my heart goes out to you right now. You may not think it but you are one very strong and courageous lady.

Just remember, your little soul chose you to take this life journey with, he could have chosen a million other mother's, but he chose you! (cause he know's how special you are!).

((hugs))