struggling :(

[nonos]

hi, to cut a very long story short my ds is 13 months old, has severe combined immunodeficiency, a seizure disorder, a neurodegeneritive condition, is deaf and blind, on oxygen, fed by pump via a peg-j, and has global developmental delay.
i adore my ds, he is my absolute world but im struggling to come to terms with everything.
i was told by doctors that he wouldnt live past a year old, then they said 3 years and now they are saying he wont live beyond childhood.
the truth is, they dont know much about ds's condition.

not having answers and not knowing what to expect is proving very difficult for me to deal with. i just want to know how things will pan out, whether to plan for the future etc.
i cant bare to sell/give away/ throw away any of his clothes or anything because i know one day i'll be without him and his stuff is all i'll have :(
at the moment ds is very small, but im dreading him getting bigger and not being able to move him around as easy.
im prone to depression anyway so having this heavy load is really weighing me down :(
i feel so guilty feeling like this, im so lucky to have such a happy strong lovely little boy. but i just feel so hard done by. i cant help thinking its just not fair. ive lost all my faith in god. i just want some normality in life.
my son is over a year, i just want to see him crawl and hear him say "mummy" and knowing none of them things will happen is breaking my heart.
im worn out putting on a brave face when inside i just want my ds to be healthy and to have a happy normal life with him :(

Nonos i am so sorry for how you are feeling at the moment.I have a daughter who has rett syndrome so she is profoundly disabled has seizures that are uncontrolled at the moment.She also has scoliosis,severe developental delay and is tube/pump fed.Even though my dd is 12 years old i still have days when i think its all too much to cope with.Then she smiles at me and melts my heart.I too felt like you are feeling right now.It is totally normal to feel like this.Try to take a step back.Take a deep breath make a cup of tea.Try not to think beyond tomorrow.I live day to day and what happened yesterday i can't change.You can do this and you will just try and take small steps.I used to think my dd will never do this and never do that but she has done things that have amazed me.

Hi Nonos - I just wanted to say how sorry I am that you are having such a hard time, I can't imagine how difficult things must be for you. Do you have any friends or family close by that you can talk to about how you are feeling? Alternatively, have you tried chatting to your HV? I use mine for the bad days when you don't want to admit to your friends & family how tough things are getting. Take care of yourself x

Hi. I can't add much except to say how sorry I am, I have a friend who lost a lovely little girl like this and she got support here from a place called derian house. Is there anything like that near you?

ds is doing things that are unexpected and he makes me so so proud every day. he isnt the kind of baby that gives up. he has fought and fought and is so strong. i just hate having so little information on what is wrong with him.
friends and family say i should go and do stuff ie go out with friends, take up a college course. but i dont want to miss a second of his life,knowing its going to be short :(
people tell me not to be so morbid and to just take things day to day, but its really hard to do. i dont know how i can stop thinking this way. dont get me wrong, this isnt all i think about 24/7 but when i do it really gets me down.

Hi Nonos, I'm sorry you are having such a hard time. It's natural to have times when it all feels overwhelming and you need to be able to express your long-term worries without being told you are being morbid even though I'm sure family and friends mean well and are trying to cheer you up - I think people often don't know what to say and end up being unintentionally insensitive. It's great that your ds is surpassing all the doctor's predictions for him - I hope he continues to make great progress and I hope you manage to get the information you need.There is a support group for children with rare disorders - I wonder if that might be an extra source of support for you?

Hi Nonos, so sorry for your predicament. The fact your son is a SCID but is now 13months old is a fantastic achievment. I know a little about SCIDs but not about the other issues your DS has. SCID babies have the odds stacked against them as they have no immune system. Are you at the Children's Hospital in Newcastle (formerly at Newcastle General Hospital) or Great Ormond Street? Both of these hospital's pioneered treatment on SCIDs in the 1980s.

The Bubble Foundation supports the Newcastle hospital, here: Bubble appeal and I found a page on scids on the GOS website here The bubble appeal website also has information on parental support. Talking to others who have been in your position would help.

Don't dread the future, take one day at a time. He may not be able to speak but he'll know that you're there. That will be important to him. Remember that. As for his things, once he's done with them, box them up and put them in the attic. You don't have to make a decision on what to do with them now. Leave that for another day.