I Just Need To Vent...

[andersonfam06]

So, my niece was just diagnosed with type 1 diabetes in January. She had just turned 1. Well, my sister is FURIOUS with me that my son is sick. She sees Lanigan's "problem" as trivial compared to Hailee's and has asked me not to talk about it with our family so that the "attention" is pulled away from Hailee! Seriously, grow up! It's not like this is a contest. I feel for Hailee. I really do, and my sister and her husband. But, not to sound rude, whats going on with Lanigan is happening to US! It is a big deal. My baby hasn't gained an OUNCE since he was 4 months old. Actually, he has repeatedly lost weight, and now weighs less than he did at 4 months. And we need the support of our family just as much as Hailee does. We don't even know what is going on with our little guy. Anyway, I just needed to vent. I am blown away by her behavior. I have done so much for them and Hailee. I even let it slide when my mom missed my graduation(from colleg, big ass deal) to go to Florida while Hailee was in the hospital. GRrrrrrrrrrRrrr.

[AndreaB]

I'm sorry. I feel your pain and anger. There is always enough love from grandparents to be a part of every grandchilds life, sick or healthy. You are right to be hurt. Your sister shouldn't expect all the sympathy. It sounds like Lanigan has celiac. Diabetes also runs with celiac a lot. Is Lanigans appointment today or was that last week? I know he had one but thought he was scheduled for another one.

[taz sharratt]

So, my niece was just diagnosed with type 1 diabetes in January. She had just turned 1. Well, my sister is FURIOUS with me that my son is sick. She sees Lanigan's "problem" as trivial compared to Hailee's and has asked me not to talk about it with our family so that the "attention" is pulled away from Hailee! Seriously, grow up! It's not like this is a contest. I feel for Hailee. I really do, and my sister and her husband. But, not to sound rude, whats going on with Lanigan is happening to US! It is a big deal. My baby hasn't gained an OUNCE since he was 4 months old. Actually, he has repeatedly lost weight, and now weighs less than he did at 4 months. And we need the support of our family just as much as Hailee does. We don't even know what is going on with our little guy. Anyway, I just needed to vent. I am blown away by her behavior. I have done so much for them and Hailee. I even let it slide when my mom missed my graduation(from colleg, big ass deal) to go to Florida while Hailee was in the hospital. GRrrrrrrrrrRrrr.

my sister is also like this, a total attention seeker. why should you have to keep quiet about your childs illness, not to be rude here but diabetes can be controlled with meds but celiac cant. ide be mad as well at her behaviour. vent away you need it.

[psawyer]

Both children have serious health conditions which will require constant attention for their entire lives, including support from family and friends. The need for support will diminish (but not go away) as they get older and are better able to look after themselves.

Your sister is being a complete j@cka$$.

[andersonfam06]

I'm sorry. I feel your pain and anger. There is always enough love from grandparents to be a part of every grandchilds life, sick or healthy. You are right to be hurt. Your sister shouldn't expect all the sympathy. It sounds like Lanigan has celiac. Diabetes also runs with celiac a lot. Is Lanigans appointment today or was that last week? I know he had one but thought he was scheduled for another one.

He had an appt. Monday, and he goes in for his upper and lower GI and biopsy tomorrow. I've talked to the doc about the biopsy, and we are more than likely going to hold off. If he sees what he needs to see with the scopes, he'll stop. Otherwise, he'd really like to figure out what is going on, so I have given him permission to, in the case he doesn't see something obvious, go ahead with the biopsy. We are also going to see an endocrinologist as his sugars were very high at his appointment.

[jerseyangel]

I'm so sorry that this has happened. I understand why you need to vent, and am glad that we can be here for you! I also understand because I have family members who don't come right out and say it, but feel the need to compare everyone and everything. What people like this don't understand is that there is enough love and understanding to go around--what is paid to your child does not take any away from hers. The situations may be different, but that does not mean that one is more important than the other--they're just different. I wish I had real advice for dealing with this (if I did, I'd use it myself!) What I have found is that you can't change anyone else--only your reactions to them Continue to do what you need to do for your child, and don't let anyone tell you what you can and cannot say.

[tarnalberry]

Something I heard once (greatly paraphrased), "If I'm suffering with cancer, and sick from treatments, and you come to visit and stub your toe really hard on the coffee table, my pain from cancer and chemotherapy doesn't make your toe hurt any less." You're sister (who thinks her's is, by far, the worse situation) needs to learn this (though I don't think the two situations are that different in truth).

[Luvs to Scrap]

Hopefully your sister will grow up soon and figure out that both of your kids would benefit from the whole family's support. I know how frustrating it is to have a family revolve around one siblings needs and wshes. (my sister in law is TOP priority for my MIL)

Hopefully your son's appointment will go well tomorrow and they won't need to do the scope. It sure sounds like celiac a culprit. I'll be praying for your situation. Vent when you need to! I love this forum for the support we can give each other.

Kendra

[ehrin]

You may want to remind your sis that since her daughter has been diagnosed with an autoimmune disease that she is now susceptable to more autoimmune diseases and that she may want to pay attention.

See this article:

Open Original Shared Link

ONE in TEN diabetics develope Celiac disease - I am one of those diabetics.

Seriously, she should be way more attentive to your situation because she very well could be in it one day.

[penguin]

You may want to remind your sis that since her daughter has been diagnosed with an autoimmune disease that she is now susceptable to more autoimmune diseases and that she may want to pay attention.

See this article:

Open Original Shared Link

ONE in TEN diabetics develope Celiac disease - I am one of those diabetics.

Seriously, she should be way more attentive to your situation because she very well could be in it one day.

Off topic, but YAY! That was my local paper! It truly is a great article!

Um, your sister needs to take the stick out of her butt and realize that you both have children with complimentary autoimmune diseases and that it would benefit you both (and the family) if you worked together.

[angelsmummy]

[you know I can feel that frustration here, I will share with you may same thing.

When we had our first child 9 years ago, he was classed as an intersex child, they could not tell outwardly genital sex by looking. After one week tests came back that he was a boy with severe hypospadias. My older sister who at this time had 2 older boys, turned and said to me "you know what I could have a child with something wrong, or one of my boys could injury their testicle, or break a leg or amputate an arm, Bryden's is not that bad!" I was stunned because until any of those things happen they are still what if's or maybe's, we are dealing with something that is real TODAY!! And at the end of the day just because we are dealing with this doesn't make us immune to more tragedy of misfortune in the future.

About 18 months after this was said misfortune hit us again when we had our second child a little girl, she was diagnosed at 32 weeks gestation with a Hypoplastic Left Heart, she died at 7 days of age 12 hours post operative. This same lovely darling sister, told me when I went home 3 weeks after our daughter died that apparently her and my older sister had had a conversation that they were shocked that Devaney died because they thought that I was exaggerating about her heart defect. I am not so much cross what they said but in the fact that she told me this.

Fast forward 16 months from this date and my sister has another son, this time she has the misfortune, her son has a lot of problems, he was born without a cereballum, and has moles throughout his body, his future is uncertain. I so feel for her, I have never once compared our children, 1 or 2 years ago she and I were talking on the phone, and she was upset about her son's prognosis, she said to me "you know Devaney's heart defect killed her when she was a baby that was how bad it was, and you know Jacinda Bryden's condition will only kill him if he takes his own life, Kade's condition (her son with the health problems) he doesn't have choices it is up to fate whether he lives or dies" I hung up on her.

The reason that I hung up was because of our son's condition they have told us that he has an increased risk of suicide because of the 'mental' trauma of being intersex! Does she stop for one minute to think of how we will feel if he did in fact Heaven forbid suicide-the guilt that we as parents feel knowing that this was a distinct possibility, NO!!!!

What is it with siblings, like last year Thayne (potential Celiac child) broke his arm, the ning nong Dr's didn't pin in break, now it is crooked they are thinking that they might have to repair the crookedness next year, families response just leave the boy alone- "OH OK MY SON WILL BE SWIMMING IN CIRCLES FROM NOW ONE AND THROWING BALLS OFF TO THE SIDE!!!"

Why is all I want to know, do they think that we pray for these special needs children, for the "oooo ahhhh!" affect when we are sitting in the dr's surgeries, that we like to be the odd fish out at mostly everything, and have names whispered and giggled about us, like "Oh here come the Munchi family" meaning the munchausen by proxy, they thought that this was funny until I burst into tears.

Come on friends and family support is what we need because quite frankly we are emotionally tired enough we don't need no more crap piled onto the cart.

Take Honey you are not alone with mindless selfish attention seeking siblings, unfortunately!

Love Jacinda

[andersonfam06]

Thanks everyone for the kind words and allowing me to vent. I just can't believe how selfish some people can be. I can't stand the remarks... The, "Oh, if he stays away from gluten and is later reintroduced he will be fine..." What the freaking heck. I just wish she wouldn't act like she knew what she was talking about. It'd be like me telling her that if Hailee were to avoid sugar for a year, she'd be able to have them again in 2! I guess I should have expected it, she competes in every aspect of our children. "Hailee does this at 18 months, Hailee does that..." Which is crappy to hear when your little one can't help where they are. I mean, Lanigan is okay developementally, but he does struggle doing some things. He is HALF the size is is suppose to be!! And he throws up 14 times a day! It is painful for him. EATING is painful. He can't help what he can and can't do. GRRRRRRR!

[azmom3]

I'm so sorry for what you guys have gone through. I know what you mean about being completely exhausted and stressed and then to have to have more added to it by your own family being insensitive?! We shouldn't let what other people think and say get to us, but much easier said than done.

My situation seems so trivial in comparison, but it really affected me and is still affecting me. The first time I really realized something was wrong with my baby (13 months at the time) was when we had to fly back home for a family emergency. We stayed with my sister and her kids. My son started having a massive allergy attack at the airport that continued to get worse as we boarded. By the time we got to my sister's house, he started having asthma...only I didnt' know it at the time because I wasn't aware of what to look for. I couldn't hear anywheezing noises. I just knew something was wrong because he cried almost non-stop while we were there (very out of character for him). I just attributed it to the travel and being off schedule. Over the next couple days, we both had virtually no sleep as he would cry every time I layed him down and only wanted to sleep if I was standing holding him...he knew the second I sat down or tried to sleep with hiim on my chest. Then the vomiting started. I had no money, no car, and very bad insurance. My sister (who instead of acting like she cared about her nephew and wanted to help, acted like she was doing me a huge favor) dropped us off at the doctor. They told me he was having asthma and also had an ear infection..gave me anitbiotics and steroids for the asthma. Over the next week or so of our trip there, he was still not getting better and in fact seemed worse. One time he threw up all over me when I was laying down with him. It was in my hair, on my face, down my shirt, etc. I asked my sister if she would please keep an eye on him while I took a quick shower to rinse off. (I didn't want to leave him alone for even a minute when he was throwing up and so needy.) She said she would in a minute as she was putting her own kids to bed at the time. I waited an hour and she never came down so I asked her again. She said "FINE" and took him from me. I could tell she wasn't at all happy about HAVING to helping us. Another thing...it was freezing in her house...winter time...I think it was 55 degrees or so. I could deal with it, but I asked for another blanket for the baby as we left in such a hurry and I didn't have any with me. She never offered or got one, so I took the initiative of turning the heat up a little (figuring that under the circumstances, she wouldn't care just for a short time). I was wrong...got scolded and the heat was turned back down. I would've left if I could, but again had no money or car adn felt stuck. When we finally got back home, we saw two more doctors...one told us he had bronchitis and another told me pneumonia. He went to the ER twice that week and was then admitted to the hospital overnight. This was when I found out how bad his asthma was. His blood oxygen level was very low. They showed me how to look for retractions in his chest and throat (which I never knew). They had nurses running and had him hooked up to a breathing machine within 30 seconds of us walking in the door. Over the next 6 months or so, he continued to drop in weight, had several more asthma attacks despite being on a daily maintenance drug. He continued to vomit on and off, 4-5 times a day. They screened for cystic fibrosis which was negative, then celiac, which was positive (blood only so far). He is also allergic to everything they screened him for...milk, eggs, peanuts and all tree nuts, cats and dogs, and I don't remember what else. I didn't even tell my sister, but when she heard through other family that he might have celiac disease, she said, " yeah, allergies suck, my daughter's allergic to milk and cats and dogs, so I know how hard it is." I dont' want the attention, but a little understanding might be nice. My mom on the other hand actually picked up a celiac book and read the entire thing before the blood test even came back positive. That's the kind of support that we need!

[Nic]

Unfortunately a lot of people who are not familiar with Celiac just brush it off as an allergy. I can't tell you how many times I have heard, "oh, your kid is the one with the allergy". I always clarify whether they are interested or not. But to be honest, my father (who I have a limited relationship with) was diagnosed Celiac 7 years ago. All my sister and I knew was that dad couldn't eat wheat or he would be extremely sick with D and look emaciated (sp.?). It wasn't until my own son was diagnosed that I learned how serious an illness it can be if untreated. So my point is, it is simply ignorance. Your sister needs to educate herself on your sons condition.

Nicole

[azmom3]

I agree with you that it's ignorance. I've been the same way with other people's issues...until it hits close to home, you never truly understand. Any suggestions on getting family and close friends to understand without being pushy or do most people just deal with the ignorance? It seems to me that if you have one person in the group that wants to learn more about it, then it's good to educate them and hope that they'll pass it on to the others...maybe the rest of my family would be more apt to listen coming from someone else??