My son has Cystic Fibrosis and think I need some support

[Cymrykuini]

I have tried looking at online support groups but I found it quite overwheming. I think I just need to talk to ONE person that has been where I am. I dont really know where to start tho.

I think I'm still getting over the diagnosis, I dont know.

I'msorry - I think I just may be feeling a bit sorry for myslef. Charlies medica routine is so intense and I feel ike it's all on my shouders, like if he gets sick again it will be because I havn't done enough or it done it well enough.
My dh trys, but he has to work obviouslu and at the moment he's in the UK at my FILs funeral anyhow. Which is obviously so important but I'm struggling a bit on my own here.

oh well....just my rambles. Sorry!!

[babydolls]

Praying for you, sweetie. :hug:

[Kinsa]

Hi, honey. I haven't been where you are, but I just wanted to let you know that I remember when you learned of the diagnosis and that I prayed for you back then. I will still pray for you as you search for a companion in this journey of yours. You must feel very lonely in this, and I know that many times if you can find just ONE OTHER PERSON who has been there done that, or who is currently DOING it, it can really help in the struggle. Please don't hesitate to come here and let it all out whenever you need to. :hug:

[MaeinTX]

and will pray that the Lord leads you to that one person and helps you with your search.

[kcsmom76]

Praying!! :hug:

[joy2bmom]

I am not in your shoes but I just want you to know that I will pray for you, your ds, & your family. Does your local hospital have any resources or support groups? ((hugs))

[Tennismom]

Please don't apologize. This is a safe place for you to share your feelings and concerns.

I do not have CF in my family but I do know what it is like to struggle with a recent diagnosis for a child. I was lucky to find a tennis buddy whose son has the same thing as mine (although her son is in his 20's now). I will pray that God sends you that special person.

[Cymrykuini]

As a result. the support is really minimal.
They are all so lovely up at the hospiatal but every time i ask a question they alway s seem to have to ring The CHildrens hospital for an answer. THe national childrens hospital is seven hours drive away and although I appreciate that they are gettting the right answers for me, I just get frustrated thatthings dont happen straight away. Often I have to wait two or three days for an answer if not longer and it just get's really hard when you dont know what your doing in the meantime.
THey have suggessted the internet but I've found those sites really hard because everybody's kids are so sick and they are all need ing support which is I know what the sites are for.... but guess i'm just not there yet.

Thaankyou

[thebeckery]

Can you call the Children's Hospital yourself without waiting for the middle man, so to speak? Is there someone there that you can call?

[Teamsterswife]

:hug: :console: I'm sorry Robyn! :(

I'm not in your exact shoes, but Lil D is a special needs child, and it can be tough!

Prayers for you, dear sister!

I'm glad you found your way to the new board. I've missed you! :)

[4littlelambs]

Robin, firstly, welcome back to the board! :) Please stick around for support and love and Godly wisdom, about Charlie and all! My son has Down Syndrome and other medical issues (altho none so 'medical' as CF) and this board has been wonderful in the way of support! Even if we're not dealing specifically with your problem, we will love and pray you thru it!

Secondly... I have a friend who's daughter has both Down Syndrome and CF! She is a wonderful advocate for her daughter and a wonderful mom! She lives in AZ so obviously has more access to care than you do, but maybe she could help answer some questions or be a support to you in some way! Please PM me if you're interested in emailing with her! I will pass along your info to her (she is a cyber friend as well on a board for Down Syndrome support)! She really is lovely! Let me know...

((((Robin & Charlie))))