XP: Just want someone to understand

lulubugsmama · May 2013

Maybe this is more of a vent, or crying out for extra support even. Whichever it may be, I hope I am not alone.

When DD was born we found out that her newborn screening for Cystic Fibrosis came back abnormal. We have been through 2 sweat tests and have come back elevated, but not a positive. A month ago my husband and I elected to do blood work instead of another sweat test. We got the results on Friday. DD has one mutated CF gene and one adnormal gene. She will have another sweat test done when she is a year old to determine if she does in fact have CF. Right now, the doctor is referring to whatever she has as a "Cystic Fibrosis Related Disorder".

As much research as I try to do on this, I am still lost and confused. I feel like the blood work was supposed to give us answers and it only left me more in the dark. Everyone is trying to be supportive, and in their own way they are, but I don't need sympathy...I just need friends and support. My husband is dealing with this in his own way, which makes it hard to support each other (he keeps it all in). I find myself crying often and other times ready to tackle whatever is thrown at us.

I know things could be much worse. I just want answers and I want to understand what is going on with my baby girl. Has anyone else been through this or know someone who has?

RondackHiker · May 2013

That's tough. I know you don't want sympathy, but I still feel the need to say that I'm sorry.

What kind of support do you need? Can you ask someone for specific help?

blowfish11 · May 2013

I don't have any information for you, I just wanted to offer my support.

((hugs))

TrixieMonroe · May 2013

My cousin was Dx with CF many, many years ago. Apparently his case is severe and was given a very grim prognosis and life expectancy. He's now in his 20s and married and doing very well. There were many hard years and lots of setbacks but his future is very bright these days. His parents, unfortunately, drifted apart but that was because they prepared their son for the absolute worst and spoiled him beyond belief because of his original prognosis and he became a bitter, rebellious pre-teen and teenager and it tore his parents apart.

Our second child was stillborn and our oldest has some health issues and it absolutely has stretched us to the breaking point a few times, but when we lost our child, his aunt who has also lost a child told us, "You let this bring you together or it will tear you apart." We both remember that when we're drifting and we come together in a united front.Our "friends" walked on us when our first child was born and then again when we lost our second.

You will get answers and you will get through this. One of my hardest lessons was learning how to tell my husband what I needed from him because he was carrying his own burden. Once I was finally able to get past that myself, things were vastly improved between us. I hope you guys find what works for you.

klondikebar · May 2013

I don't have any experience with this in particular, but I spent a couple of years in diagnosis hell with myself. Don't be afraid to ask questions, demand tests and call the doctors when you don't understand something. Never feel like you are being a pest and trust your instincts. Get as many opinions as you want and don't be afraid to make suggestions based on your own research. GL and I wish the best for your family.

lulubugsmama · May 2013

SouthSideDrea:

I haven't been through this with CF, but I know what it's like to deal with a life changing diagnosis.

The first thing, and I don't have to tell you, but as well meaning as people are, they suck. They want to help but they don't know what to say. They say stupid awkward things. Forgive them.

The second thing, soon enough, you'll figure out what friends you want to talk about stuff with. They will talk to you about what you are feeling when you awnt to talk, and the resty of the time they'll talk to you like they did before you got this big news.

People will offer pelnty of unsolicited advice. Deal with it however you want. I'd love to tell people to STFU but instead I ususaly just say "thank you, but we aren't interested in xyz". Those unsolicited advice givers will not understand how not helpful they are, no matter what you say, so for me, it's better to jsut get out of the conversation fast.

Let yourself cry, and grieve. Feel your feelings. It's all part of it. And it's ok. Even the dark thoughts are ok. You won't always feel like this.

Adn your husband and you will take separate paths, but you'll both get there. Let him feel his feelings too, and be kind to each other.

Thank you for this...all of this! I understand that people are interested in how my DD is feeling and what the latest news from the Dr. is, but no matter what the ultimate diagnosis is, she is more than that. Plenty of my friends are understanding and don't bring it up all the time...but then there are the ones who only want to talk about this, and I simply don't want to, it's overwhelming.

I have cried but I don't think I have given myself the opportunity to really grieve and let it all out. I try to be strong and keep it together when all I want to do is fall apart and scream!

lulubugsmama · May 2013

Thank you everyone for the support. I feel like I have a better grasp on things this morning after reading all of your responses! Yesterday was just one of those days where I really needed kind words and advice/support. I know things could be a lot worse, but I think anytime you get news that your child is not 100% healthy it's devastating. Again, thank you....I really appreciate it.

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