T'smom Posted February 9, 2012 Share Posted February 9, 2012 My sister has an 18 month old who has epilepsy. He is on fairly strong (I believe) anti-seizure medication and hasn't had a seizure for several months. They recently had a doc appointment that was positive, but obviously, my sister worries about him a LOT. I have a healthy, faster than average 18 month old. There is only 10 days between the two. Y'know how there is a vast range of "normal"? Like it's normal to start walking at 9 months or at 14 months? Well, my dd is the 9 month and my nephew is the 14 month. I think this causes her to worry more. We live several states away from each other and I just visited for a couple weeks (staying at my parents, but they live in the same town) and she and I seem to not really be connecting. I feel like if I try to be positive about his development (telling her that he does fall in the range of normal- which he DOES) then she feels like I'm not taking her fears and worries seriously. But I can't exactly be negative either! I don't know what to do to show her that I love her and her son. Well, see, she KNOWS that. She knows I would give her or him a kidney- I would do anything I could to help her. But I still feel like there is this disconnect where she doesn't feel loved even if she knows she is. I want her to feel loved. I want to be there for her, but I'm just not sure how. Any advice? Quote Link to comment Share on other sites More sharing options...
ktgrok Posted February 9, 2012 Share Posted February 9, 2012 I find the best thing to do in these situations is acknowledge how hard it is. Tell her that you know it sucks, and must be terribly stressful, and ask how you can help. Tell her that you are there if she just wants to worry outloud. Quote Link to comment Share on other sites More sharing options...
Dobela Posted February 9, 2012 Share Posted February 9, 2012 :grouphug::grouphug::grouphug: First, stop talking about normal ranges. As the mom of a dd who has had physical delays and health issues, I would rather just not talk about it to someone who has a child that is developing typically. Not that I am offended, or not, or comparing children, but sometimes I just need to vent and talk without any advice or comparisons. The first year of my dd's life she had over 150 medical appointments. The second nearly half that number. We dropped out of co-op and had little time for any other activities so I became pretty isolated. I became so detached from everything else trying to manage all that and home school my older child that it was the only conversation I knew. While I talked about it, I wasn't looking for solutions or reassurrance, I was just trying to talk. KWIM??? First, her child ISN'T developing normally. If he was, there wouldn't be seizures. Then you have to know that seizures alone can cause developmental delays, and some medications have horrible side effects that must be constantly monitored. While he may be ok right now, that could change quickly. And as he grows, developmental delays are likely to become more apparent. I was told many times before my dd was 3 that she was right on target and at the low end of normal- but she wasn't and now she is even further behind. What I needed most during those early days was a break. I needed time away to just relax and relax some more. A massage, getting my hair and nails done, something that was just me because the rest of my days were spent carefully watching my child, documenting everything, doing tons of research, managing multiple doctors and appointments, and so on. And, your sister may not be communicating well because she is so tired and worried. This is difficult. She may still be mourning. Since you are so far away, maybe you can just occassionally send a note that says nothing more than, "Thinking about you today and said a special prayer just for you, Love, Sis". Or thru your parents arrange a spa time. Or suprise her with a floral arrangement with a similar sentiment. One of my friends would send me by email any funny comic she could. Another one bought me knitting supplies and patterns for small projects to take to appointments. Yet another would send me romance novels after she read them so I could have some brain candy after all the other hard research I was doing. They weren't grand gestures, and they didn't take a lot of time and weren't overly sentimental, but it let me know that they were still thinking of me. Anyway, I don't know if this helps, but maybe it will give you some ideas. Quote Link to comment Share on other sites More sharing options...
Dobela Posted February 9, 2012 Share Posted February 9, 2012 I just want to add, that while your nephew may fall in the general range of normal, if it is like what was happening with my dd, every appt included some sort of eval designed to watch for potential problems in speech and motor development. Each time we went, we were told just at what level she was at. It was very difficult being told that your child was nearly 2 but only had the skills of a 1 year old (or less) in some portion of some test. Not to mention, some doctors and medical staff I had to deal with were less than professional. I had serious concerns that were just ignored or pushed aside and that just added to my overall worry and state of mind. :grouphug: You are a good sister. Just give her some time. Quote Link to comment Share on other sites More sharing options...
kalanamak Posted February 9, 2012 Share Posted February 9, 2012 Start sending her a little letter every week or two, just a this and that, and did you see the... It will show you are thinking of her, and this will show your love. Quote Link to comment Share on other sites More sharing options...
T'smom Posted February 9, 2012 Author Share Posted February 9, 2012 Dobela- thank you! That is some very good advice. I'm striking the word 'normal' from my vocab. It seems like that should be obvious, but for some reason it wasn't. I guess I was trying to be reassuring. She has been told a lot that he's on the "low end of normal". I hate that it's hard on her to be around my dd. I really, really hate it. Thanks. Quote Link to comment Share on other sites More sharing options...
RanchGirl Posted February 9, 2012 Share Posted February 9, 2012 I agree with not discussing normal or milestones/development at all. I assume she has other resources for that and it's just too touchy with two so close in age but developing so differently. Instead, I would suggest that you focus on how she is doing/feeling, and also say positive things about your nephew that involve no possible comparison or negativity. "He has the most beautiful smile." "I love his spirit." "He is cracking me up when he does XYZ, you've got a little comedian on your hands there!" "He looks so cute in that outfit you picked out, where did you get those adorable shoes?" If you're long distance, ask for pictures, ask to talk to him on the phone and/or facetime. Send little books and toys for him, cards and chocolate for her to let her know you're thinking of them. Quote Link to comment Share on other sites More sharing options...
Riverland Posted February 9, 2012 Share Posted February 9, 2012 nm Quote Link to comment Share on other sites More sharing options...
kalanamak Posted February 9, 2012 Share Posted February 9, 2012 I know that my sister loves my daughter, but what my daughter needs is kindness from her cousin. This has definitely hurt the relationship between my sister and me. Now that's off my chest.....just something for you to think about as the kids get older. :grouphug: Some of these nasty girls improve. Quote Link to comment Share on other sites More sharing options...
Mom0012 Posted February 10, 2012 Share Posted February 10, 2012 I find the best thing to do in these situations is acknowledge how hard it is. Tell her that you know it sucks, and must be terribly stressful, and ask how you can help. Tell her that you are there if she just wants to worry outloud. :iagree: When you have a child that is struggling developmentally or medically, the last thing you want to hear is that "he's just fine". I think people have very good intentions in saying that, but it totally invalidates what the mother is going through. From what I have heard about seizure meds, they can cause developmental delays. Perhaps she feels in her heart that her child would not be on the far end of the spectrum if he were not suffering from this medical problem. Honestly, to think that your child may never reach the potential they were born with because of some unexpected circumstance is enough to break a mother's heart. I don't doubt you are supportive. It's natural to want to point out the positives when a person is going through something like this, but it just tends to make them feel misunderstood and alone. At least that is my experience.:grouphug: Lisa Quote Link to comment Share on other sites More sharing options...
Ottakee Posted February 10, 2012 Share Posted February 10, 2012 You have gotten some great advice and ideas. I like the idea of finding out how to do something for your sister to give her a break---be it a dinner out and a well trained babysiter/respite care worker for the little guy, something special just for her, etc. Medical appointments and meds and doctors, and lab work and therapy and ..........can become all consuming and very wearing. Sometimes mom just needs a break. Also, if there is a way, I would try to see about figuring out a way for her and her husband to get away overnight 2 or 3 times a year. They don't even have to leave town or go far but just GET AWAY and be able to sleep well and go out for dinner, etc. The risk of divorce in families that have a child with special needs/medical issues is VERY high. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted February 10, 2012 Share Posted February 10, 2012 My girl is a little older, still has seizures and I know your pain. So heartbreaking :grouphug: It may get worse... My dd12 had epilepsy, lots of delays, ld's, medication side effects... you name it. My sister lives in the same town and has a daughter the same age. I would say that when the kids were younger, it wasn't as hard on me, the parent, to compare the cousins because I was too stressed and worried to bother doing that. Now that dd is older, she no longer has seizures, but still has delays. The social skill delay is by far the hardest. Her cousin is not nice to her, rarely & reluctantly invites her to b-day parties, puts down her clothes (she has fine motor skill issues & couldn't button jeans until she was 10), rolls her eyes when she talks, and on & on. If they are out together in public, cousin will completely ignore her & act like they don't know each other....etc. I get so sad I just cry. Of course, she doesn't exhibit any of this behavior in front of her mother, so my sister thinks her daughter is a saint. I know that my sister loves my daughter, but what my daughter needs is kindness from her cousin. This has definitely hurt the relationship between my sister and me. Now that's off my chest.....just something for you to think about as the kids get older. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted February 10, 2012 Share Posted February 10, 2012 I would encourage you to read up on the grief cycle...it comes around and then back around...there's a long journey in accepting and adjusting to your new normal when your child has learning and/or medical needs. My sister has an 18 month old who has epilepsy. He is on fairly strong (I believe) anti-seizure medication and hasn't had a seizure for several months. They recently had a doc appointment that was positive' date=' but obviously, my sister worries about him a LOT. I have a healthy, faster than average 18 month old. There is only 10 days between the two. Y'know how there is a vast range of "normal"? Like it's normal to start walking at 9 months or at 14 months? Well, my dd is the 9 month and my nephew is the 14 month. I think this causes her to worry more. We live several states away from each other and I just visited for a couple weeks (staying at my parents, but they live in the same town) and she and I seem to not really be connecting. I feel like if I try to be positive about his development (telling her that he does fall in the range of normal- which he DOES) then she feels like I'm not taking her fears and worries seriously. But I can't exactly be negative either! I don't know what to do to show her that I love her and her son. Well, see, she KNOWS that. She knows I would give her or him a kidney- I would do anything I could to help her. But I still feel like there is this disconnect where she doesn't feel loved even if she knows she is. I want her to feel loved. I want to be there for her, but I'm just not sure how. Any advice?[/quote'] Quote Link to comment Share on other sites More sharing options...
T'smom Posted February 10, 2012 Author Share Posted February 10, 2012 Thanks everybody for the ideas. I can't personally do anything to give her a break (like babysit) because we live several states away, but she has my parents in the same town and her in-laws just a couple towns away and they both take care of him. And I don't want anybody to think that I'm the one bringing up milestones or comparing or anything. She brings it up, sometimes asking if my dd is doing 'such and such' yet or expressing worry that he's not doing something. (For example, walking at 14 months) I have said "Don't worry about that- it's perfectly normal for kids to not be walking at 14 months." And it IS. But I totally understand what people have said here and I won't say that anymore. (He's 18 months now and is walking- though very unsteadily) It's really hard for me to not say much......she's my baby sister and I've been bossing her around her whole life! :D But I WILL do this!!!! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.