Rejected by grandparents after JD diagnosis

[RedneckDebutante]

My daughter is 11. In December of 05 she will be diagnosed 2 years. I worry so incessantly about her. I have terrible anxiety that I'm going to come home from work and find her comatose. I try to reassure myself that everything that CAN be done is being done for her condition but I don't know how to get the anxiety under control. :-(
If that isn't enough, my dad and stepmom stopped having anything to do with her close to the time she was diagnosed. When she was hospitalized upon diagnosis they did not call, visit, or send a card. I did not know what to say to my poor dtr. I still don't. Once I actually confronted my stepmom about their lack of concern over her and she replied that she just really didn't think Diabetes was all that bad of a thing to have. My father and I used to be so close but now I feel like I hate them both. As I'm sure you all know, when your child is diagnosed, you need all the emotional support you can get. So to get snubbed by the people who are supposed to care about your child whether she has a life-threatening illness or not is so very hard. :-( Even though her dad oversees her Diabetic care while I work (we work opposite shifts) I still feel so very alone and I don't understand how they could practically disown and abandon us, knowing she has this illness. It hurts so badly.
Has anyone else experienced anything like this after your child was diagnosed? Shouldn't everyone related to the child pull together and help emotionally support the parent of the Diabetic child, or am I just living in a fantasy world? It hurts. :-( Any support appreciated

[JDRF-Team-gg]

Dear RedneckDebutante - I am so sorry that you are going through this anxiety.  The problems with your dad and stepmom probably seem larger to you because of this.  I too was super sensitive to how my family members reacted to us after my daughter's diagnosis (age 21 months - she's 18 now).  With all of the care and attention that must be given to a child with diabetes around the clock, it's so hard for us to understand that others cannot possibly relate to what we go through both physically & emotionally.  I agree with what the others have posted in their answers regarding educating your parents.  Sometimes people are afraid of the things that they don't know and once they learn, their attitude changes.  Do you belong to The Juvenile Diabetes Research Foundation (JDRF)?  If you don't, they are a great source of support and you should consider joining.  If you check out their website at www.jdrf.org, you can not only learn how to join, but you can obtain information that could be provided to your parents so that they begin to understand and realize that your daughter is the same little girl they knew before diagnosis.  Sometimes we cannot change the attitude of others and we have to learn when to let go of the hurt feelings that we've let someone else create in us.  You need to focus your energy on your daughter and shield her from the negative attitude of others.  She has enough to deal with without being a part of someone else's problem.
Take care of both yourself and your daughter!

[Durk]

That is definitely abnormal.  Maybe they just can't hack the idea one of their legacy has JOD.  Our son was just dx'd with JOD at age 15.  The vast majority of our relatives have been extremely supportive. A couple of them pulled back, but I think that is because they are uneducated.  Unsophisticated people just don't understand the needs and implications.  Good luck on educating those two.  Show them this comment.  Maybe that will help.  But they really sound like hicks.
Durk

[Christie2004]

It doesn't sound like this problem developed overnight, or just all of a sudden because of the diabetes.  Certainly there have been some sort of strained relationships here in the past?  

Perhaps the diagnosis has made things worse for some reason that I can't fathom.  But no "normal" loving, involved grandparent who was in the childs life before would suddenly cut off ties when a grandchild falls ill.  

Is there some sort of background info on previous problems with them, that you didn't mention?

[RedneckDebutante]

Thanks to all your your comments and suggestions; I truly appreciate the quick support and feedback. Yes, there is some history of a 'strained relationship-' ever since my stepsister started having kids and my stepmom got "her own" grandkids, she dropped my daughter like a hot potato.:-( And somehow convinced my dad to, also. I just would have thought that she, and especially my father, would have seen her diagnosis for what it was- found just in time, with my daughter lucky to be all right- and that they would just be banging on the doors to get in and spend time with her because they were so immensely grateful that she was okay. NOT. And no, despite my user name ;-) they are not so dumb that they think it's contagious or anything. I did educate them when she first got it; told them that it wasn't from eating sweets like a lot of people in the south tend to believe. I guess it hurt so bad because when she first got it she said "Well I know I'LL be getting tons of attention" and kind-of rolled her eyes. When they didn't come around or anything she said "Mama did you remember to tell them I had become Diabetic?" [crying] How do you tell your kid "Yes, I told them but they don't give a ____." :-( You'd think that despite the addition of my stepsister's babies, they'd still have the time of day for mine, especially with what she goes through with the Diabetes. I have told them and told them- 4 shots and sugar checks a day, minimum. They have seen her do it. They know I'm not making it up. How could you not have empathy for your grandchild, knowing this about her??
So I don't know; are there are pamphlets available about how to deal with family rejection of a JD? That would be what I need.
I'm an LPN so when she first got diagnosed I just said "Hey, I'm a bit shocked but no problem, I can handle it!" I almost wish I didn't have the medical knowledge though. Sometimes I think it makes it worse as far as worrying about what could go wrong. Sorry so long, thanks.

[JDRF-Team-LRS]

Sometimes folks don't see what we think they should & can see.  Your msg is so eloquent pointing out the pain that their behavior has caused.

Perhaps you can write them a (loving) note acknowledging how busy & happy they must be with the new young grandbabies, and also telling them how much you miss them in your lives.  Tell them their granddaughter asks why they don't visit any more and that she cries over it.  Who knows what "started it all" (chances are they see it differently than you do) ,and yet silence about the real issue (you miss them, your daughter craves them) won't make it better.  

While sharing your reality won't necessarily change their behavior, at least you'll know you've given it all you can.  And then, if nothing changes, you must face the reality that your dad is willing to dump his kids/grandkids to keep peace in his own home.  Perhaps that's not new behavior either.

While your children are young, it may be best to simply focus on the good family relationships they DO enjoy.  Acknowledge taht you also miss grampa & gramma and then move on.  Are your hubby's parents in the picture?  Any aunts & uncles & cousins?  With all of life's travails, it does help to count our blessings more often than our yearnings.  And yes, it's easier to say than to do.

[Christie2004]

Agree with the above advice, even though I would personally have to bite my tongue in half while writing a note like that!  But it is a good idea, as is acknowledging to your daughter that you all miss grandma and grandpa.  Let her know that it is not her fault--children are quick to assume things are their fault.  
Just say you don't know why they don't visit much, that you love and miss them very much, and help her see that she is not at fault.  

Good luck to you.

[RedneckDebutante]

Thanks guys for your thoughtful and insightful input. Right now I am just too angry to write anything to them in any sort of positive tone. They have caused so much damage that at this point I dont even know if an apology from them would mean much. Remember, we're talking about 2 years here, too, so my daughter doesn't even really "know" them anymore and has said she would be uncomfortable around them anyway. I guess I just needed to ventilate and get people to share my outrage and I so appreciate you helping me in that regard.
Bless you all

[Starsnrose]

Ah yes!  I am so familiar with this situation and, over the years, I have seen this not only in my own family but in other families who care for diabetic children.

It is difficult to deal with when your own need for their acceptance of you and your situation is so very important, but when your child is hurt it becomes much worse!  Been there, done that, etc. etc.  

At it's worse, a childs' need for attention can be played out in the worse possible ways.  Take it from me, you do not want this to happen.  It will be up to you as her parent to make sure she is positively reinforced so she doesn't feel she has the need for her grandparents attention.  If she has other grandparents who are accepting of this situation, then they should be encouraged to reach out to your daughter.  All of this involves alot more effort on your part, but in the end, you will be so glad you made that effort.

I had to learn to finally let go of my "ideal" which included my families support on an unconditional basis.  They simply couldn't/didn't want to get involved anymore than they had to do so.  I suspect alot of it was plain old fear of the unknown even though they were offered all kinds of educational information and support.  (We are NOT talking about uneducated or unsophisticated people either!)  It is one more of those "if I don't know, I don't have to deal with it" situations.  Once my son was grown they did step in for a short period of time, but they soon realized what they were up against and they let go.

Venting is good for only a short period of time and then it becomes wasteful and unbecoming.  I found that wasting that time took away from my child who needed me far more than my extended family did.  Please don't allow anyone to steal your energy and time.  Your relationship with your daughter is so important.  I know because I can no longer hug my son.

I hope this has helped in some small way.  Reality is so hard to accept sometimes.  I too would suggest you get in touch with JDRF for further assistance with their online support team.  They can provide you wonderful support!

[spudnik]

My daughter was diagnosed at age 6 with Type I.  She is almost 23 now.  She has gone through the gamut of relatives and school mates pulling away from her because of her diabetes.

Even though I tried to educate the parents of her class mates on what to expect, she was left out of so many childhood activities.  Relatives didn't invite her for overnighters because they were afraid of what to do if anything happened.  Sometimes I felt they listened with closed ears.

It hurt.  I encouraged her and worked hard to educate her that their attitude was not her problem.  It was theirs.  But, even at that, she wanted to be accepted by her peers and do the girlish things little girls do.

She did have a couple of wonderful teachers in elementary school.  Each year I provided a list of signs they needed to watch for with her and what to do in each instance.  I wanted them to feel secure during the year that all would be well.  

One teacher who gave treats to the class, purchased sugar-free treats, and at treat time, she had the sugar-free with my daughter.  Another teacher, when she realized the kids wouldn't play with my daughter for fear of catching diabetes, took my daughter on her lap as she talked to the class about diabetes.  They were real jewels.

For the family, I tried not to point out the insensitive attitude to my daughter.  It was bad enough that she felt it.  But, I let her know then and still do every day, that she is special and has a wonderful like ahead of her.  With good care, she can have a full life.

She has had many complications along the way, but she uses those experiences to educate others as she writes papers in her classes.

I look forward to the day my daughter gets her wish, to be free of insulin shots.  Her dream is to allow herself to be used in human trials for a cure.  She believes if they can cure someone like her, they can cure anyone.

The fears you have are so normal.  Each of us travel that road each day.  You aren't alone.  With new research for a cure, the days ahead look more promising.

[TonyAlmeida]

It's sad - but the point is, for the majority of people, if they don't have a condition then it's not all that much of a concern to them.  And for a lot of people, they're not interested in hearing about it.

I will admit, before I was dx'd, I didn't see Diabetes as that horrible of a condition either.  It didn't affect me.  

I work for an employer and with professional colleagues who, quite frankly, couldn't care less.  

And you're not going to change their opinion either - going down that path only leads to your own frustration.

You don't have to make excuses for the grandparents.  Kids are pretty tough and understand more than you think they do.  Tell her exactly why - some people don't fully understand diabetes and some people sometimes are not interested in understanding it.