Moms how do you deal with family that is less than caring?

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Moms how do you deal with family that is less than caring?

Postby Just1more » Tue Jan 29, 2013 11:23 am

I'm having a hard few days. I feel so much anger inside and I really don't like/wish I didn't feel this way. I feel angry at myself that I have let people make me angry and sad. Let them affect me. The feelings just aren't going away. I told DH how I felt on Sat thinking that would make it disappear but it hasn't. Maybe I need to make an appt with our parish and get some guidance from the deacon. IDK. My 21 month old is not fully diagnosed. She has stumped Hopkins for now. She's on a feeding tube and her GI appt did not go well on friday and I'm so sad :( They scheduled her for the gtube in March. She's FTT and after gaining a must 4lbs lbs just lost 1lb. She barely grows in height. I made a fb post to let friends and family know about the gtube and other things discussed at the appt. and what do you know not a single family member liked or even cared to respond. I mentioned I was sad too. I just feel like nobody really cares and everybody is so fake likes really dumb random pic's with the funny sayings or pic's but when it comes down to a really sick/ill child nobody has a thing to say. It's incredulous to me especially when I see family posting all over the place so I know they saw my post on thier feed. Especially my SIL, breaks my heart to pieces. I guess I'm the last normal caring person out there or so it feels. Thanks for listening.
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Re: Moms how do you deal with family that is less than carin

Postby h0ping » Wed Jan 30, 2013 8:28 am

I am really sorry - I can't offer any help - I just didn't want to read and run.....I can only imagine how much you are going through and want your families support and I am sorry you are not getting it. I don't know why they would not respond in some way to you and offer support but I am sure that just makes your situation even worse......do the doctors have any thoughts on what is wrong with your LO??? Sorry I can't offer anything else....but I am willing to listen :)
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Re: Moms how do you deal with family that is less than carin

Postby Kryssy » Thu Jan 31, 2013 10:01 pm

I can not offer much in the way of helping you deal with your family. I cannot imagine how it feels to not have anyone acknowledge your post! I would be livid at my family as well if they didn't acknowledge it. If they don't want to write on my wall. I sometimes don't, but I would send a private message or at least call!!! I cannot imagine what you are going through. The thought of one of my babies being that sick breaks my heart and physically makes me sick. You are a very strong mommy and exactly what your daughter needs. You need to stay positive for your daughter, so my advice is to lean on your husband or friends, like us on this site, for support. Stay away from facebook or anything that might suck your energy away from your gorgeous little girls.
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Re: Moms how do you deal with family that is less than carin

Postby ete29 » Mon Feb 04, 2013 3:05 am

I'm so sorry to hear your beautiful daughter is having this problem :( as the mom of a cancer patient I was always faced with the possibility of the NG tube...I personally feel a G tube is better for the baby, as NG tubes can cause additionall problems.

Aside from that, sometimes I had to confront absent family and friends about why they weren't communicating with me about my daughter. It was always because "they didn't know what to say" ....as moms experiencing these moments that require great amounts of personal strength, we learn what it means to face these things head on! People ywhove never had to be that brave are simply not that brave and need to be told what to do to show they care. Tell your family what you need, and be grateful (not angry) when they respond to your requests..

So sad! Your daughters are so beautiful!
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Re: Moms how do you deal with family that is less than carin

Postby Just1more » Tue Feb 05, 2013 5:21 pm

:hugs: Thanks ete29 That is true about the brave thing. I just think it's so selfish that people choose to be silent because they don't have any compassion. Thank-you & my heart goes out to you you have been through hell and back. ((HUGS))
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Re: Moms how do you deal with family that is less than carin

Postby ete29 » Tue Feb 05, 2013 6:56 pm

I think it is selfishness, or more like so completely wrapped up in their own life, they don't see how they are hurtful. I don't think it's because they have no compassion. The thing that hurt me the most is when my close friends and family would post on Facebook about how perfect life is or how happy they are, and here I was and my daughter was dying in my arms. I took it as a lesion to be less self centered in my own life, and to stop reading Facebook :wink: it still hurts to remember though.

What are the doctors thinking is causing your daughter FTT? Praying for you all.
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Re: Moms how do you deal with family that is less than carin

Postby Just1more » Tue Feb 05, 2013 7:18 pm

Yes, that is understandable your feelings. What pain that is you were are feeling!!

They are not sure what is wrong with Ella. I nursed her pretty much the entire first year and this all showed up after she started eating food. But food makes her literally sick. She does not absorb any nutrients or calories from food either. She has reactions to all food she has eaten. It caused her language delays as she was so sick she could not focus on developing. But she's still not growing much so I'm still very worried. She's doing so much better tube fed but not close to normal by any stretch.
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Re: Moms how do you deal with family that is less than carin

Postby ete29 » Sun Feb 10, 2013 8:45 am

How wonderful that she could breastfed for her first year! Strange about the solid food issue. Has she been allergy tested? Thinking of you all. Hope things get better soon.
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Re: Moms how do you deal with family that is less than carin

Postby PixieB » Sun Mar 24, 2013 12:55 am

I know it's been a while since this post was made, but my eldest had FTT thanks to being a micro-prem. That was an horrific year of stress.
The gastric button sounds necessary, though it tends to lead to more oral aversions, but that's a problem for later.

As for family; extreme circumstances really does show you who cares.
We had a 3 month NICU stay with my firstborn. In that time I had dear quality good friends who brought us meals, never expected to see our baby, and washed their hands religiously every time they visited our house.
I had plenty of people who never reached out
I had family who made an effort to reach out and help (though often didn't quite know what to do, but the effort and love made its impact).
And then I had one aunt who told me I should be thankful I wasn't getting up at 3am to a screaming baby, when my baby was in intensive care and I was having to get up at 2am to pump. The same aunt wouldn't visit whilst my baby was in hospital, nor even look at pictures of her because it was "too confronting". The same aunt steamrolled over my wishes and preferences so she could see our healthy baby the day she came home from hospital (I kept her in the wrap so all they could see was a sliver of her face because I wasn't giving any more than that with all that disrespect).

Extraordinary circumstances where a child's health is significantly at risk really shows you who is worth putting energy into.
For now, you're raw, it's easy to feel hurt. It may be worth making a post suggesting ways people can help you, things you would like to hear just to help you pull through. Sometimes you've got to be blunt.
Also, facebook is unreliable for who is actually seeing what in their feed. They keep changing their system so you can easily miss posts from people you do honestly care about. I know saying 'try not to take it personally' doesn't help much.
I hope you get the support you need.

And as a sideways; I sincerely despise the term Failure to Thrive. Along with 'Incompetent Cervix' it's next to impossible not to feel like a failure as a parent when they stick that label on.
I hope they've already found the cause for her FTT. For me it took ditching our paediatrician, listening to our nutritionist and learning to trust my own instincts and training again (something which had been quietly schooled out of me through having a NICU bub) for us to turn her weight gain around. My daughter's was all about oral aversions and stress around mealtimes, so a different path to yours. I hope you find an answer soon and that she gains and grows and thrives.
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Re: Moms how do you deal with family that is less than carin

Postby Just1more » Mon Mar 25, 2013 12:41 pm

Thanks, and Pixie your right you do see who cares and it hurts when It's your MIL/SIL that doesn't. Some people are very selfish and it does hurt. Sometimes I can't wrap my head around it. She has a team at Hopkins and they are awesome. They and I are 99% sure she has Eosinophilic esophagitis . We are just waiting for a +biospy on her scope. http://www.youtube.com/watch?v=8GsCcoVGo3g This video is definitely my daughter and definitely our life. I will say going through any health struggles with your child makes you a better person. I was a caring and considerate woman before this but I have so much more empathy now. The last 3 weeks I found within myself that some people are not worth my tears because I have enough flowing for my daughter right now. Just taking a step back from them and this also means not returning some phonecalls that I feel would be upsetting. My DH's family have decided that it's best to just ignore Ella and pretend everything is fine but obviously with a tube in her nose how can you :doh: She got her surgery date 3 weeks ago for this past Thursday for her PEG placement & endoscopy bx and I called his mom to tell her as it's a 3 day mandatory stay & it could be up to 5 days depending on how she does. I called my MIL to tell her and she says well that's not a good week for me. Like I get to choose. Sigh. I'm thinking in my head why is this about you? I know my hormones right now are making things worse but it's hard enough coming to terms with it. Never asked how I felt how Ella's doing, Eric & I are doing in all this. So I told my DH you can manage your own family and call them with updates & I'll manage mine. It's too upsetting for me. She also made a comment about not understanding what's going on with Ella. I spent 7 hours typing up a email that was 1 small paragraph with 4 links and 2 youtube videos that are easy to get not all medical jargon and she responds to me. "Oh well that's alot of information. I'll get around to it." I seriously flipped out in my mind. Had to close the door and cuss LOL. I fw my husband the email so he could see what I deal with. So upsetting. He had a low point last week and he could really have used the extra support but he has none. I at least have my parents and grandparents. Ella ended up getting a high fever Tues afternoon that persisted till Wed afternoon so her surgery was canceled till April. We were so disappointed.
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Re: Moms how do you deal with family that is less than carin

Postby ete29 » Mon Mar 25, 2013 1:03 pm

I've been thinking of you and your little one, wondering how things are going. So her surgery is coming up? Sending lots of good thoughts and prayers your way.

If I may make suggestion - the moment you are given a room at the hospital, find the antiseptic wipes they keep in the room, or bring your own and wipe down the crib, door knobs, light switch etc. also wash your hands a lot! we were super vilgilant about this when we were staying in the hospital and my daughter never caught any common hospital type stuff ; MERSA, c-diff, etc.
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Re: Moms how do you deal with family that is less than carin

Postby ete29 » Mon Mar 25, 2013 1:05 pm

And Congrats on having a girl! Amazing :yay:
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Re: Moms how do you deal with family that is less than carin

Postby Just1more » Wed Mar 27, 2013 7:02 am

Thank-you ete29. Funny how things work out. Have you thought about having another baby? I think I read on your post some place about soul searching it. How are you doing these days momma? I always think about you.
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Re: Moms how do you deal with family that is less than carin

Postby MamaBear03 » Thu Mar 28, 2013 11:55 am

I had to say something for this post for you guys. I am so proud of you for overcoming your obstacles and being there for your children! I teared up reading these posts and although I don't have a child severely ill, I do have a child with Aspberger's and it is trying and demanding all on it's own.

I can attest to your frustrating feelings of anger and sometimes hopelessness with your MIL not caring. My mother doesn't. If something is wrong with ne of the kids she will be like, "That's too bad. (LET'S TALK ABOUT ME!!!!)." I am happy for you that you have a wonderful support system from your family and most important your Hubby :). Many prayers going up for both of you in your trying times. Thinking about you guys in Florida :)
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Re: Moms how do you deal with family that is less than carin

Postby OCT.4me » Wed Apr 03, 2013 12:29 pm

For as many things that are neat on facebook it has been an eye opener to me as well; I too feel left out...and alone; I get to see how alone I am when my husbands family posts pics of all they do together and leave us out...so I get the pain.

But not the stress of having a sick child; yet I can always come up with something to say. I think it is self absorption not speechlessness.

I am sorry for what you are going through; and no you are not alone on here.....what is the course of treatment if it is as Hopkins says and you believe it to be?
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