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Post by jillgibson on Sept 11, 2006 15:25:01 GMT -5
I thought this would be an interesting topic. Right now, we are dealing with quite a few changes that have Izaac upset. We are trying to keep things as normal as possible for him, but still fair to Avery.
Right now, she can't have anything cold. We've decided that none of us will have ice cream or popsicles (or anything similar) with her around. Izaac likes his ice cream, so that is near torture. We did tell him that we'll try to take him out on occasion without her, but it isn't fair to her to eat it right in front of her.
We've also got a major problem with football practices. A parent is required to stay the entire practice. DH works all of the time so he can't always go. Avery can't be outside in the evening (with the temp. starts to change it causes her to wheeze). So, he may have to quit. We are hoping his mom's dad will be able to take him when Toby can't, but haven't heard back from them yet.
Avery also gets so much stuff when sick (gifts from grandparents, aunts, uncles, neighbors, and friends). When we came home from the hospital this time it was nearly as much stuff as Christmas. Izaac noticed and we explained how much she had to go through (tons of pokes, treatments, and x-rays), but still in a ten year old's eyes it isn't fair. There are also cancelled plans because she is sick. We try, but we realize it isn't always fair.
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Post by my4boys on Sept 11, 2006 16:48:50 GMT -5
for my children, they arent affected in a huge way anymore. Landon has been the most affected. He is 11. when Lily gets very sick, he worries she will die (even though this is not the case). The first time that dh left me home with Lily, was when she was 4 days old. The Specialist had warned me that milk might come out of her nose when she used her feeder (this was also her first day with the Haberman feeder). Anyway, I was feeding her and formula just started pouring from her nose, and she stopped breathing. I was not expecting ANYthing like this to happen, and I started screaming. Unfortunately, Landon was right there. I was screaming that my baby was dying, I had her upside down, pounding on her back. My friend was just pulling into the driveway to pick Landon up for an overnighter at church. She happens to be a nurse, and came in and took over. Thank God, she was there! Anyway, later that night, our childrens pastor called for us to come and get Landon. He didnt want to stay at the overnighter because he thought his sister would die while he was there.
This has never left him, and I am amazed as I type this, that I am sitting here with tears as I remember that day. Lily sure has come a long way since then.
overall, the boys adore Lily and I think they feel she is "extra" special. In that way, its been GREAT! She will always have 4 strong brothers to look out for her.
The only other way its affected our life, is the many many dr appts. Since I homeschooled, my boys have gone to pretty much all of them. They are way too familiar with childrens hospital.
Blessings~
Wendy
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Post by Corinne on Sept 12, 2006 7:24:53 GMT -5
Amanda and David were greatly effected by Tim's life. It was unavoidable. With all the hospitalizations and doctor visits he had, I was always leaving them with someone. Thank God my family was very supportive.
I tried so very hard though to let them lead the same lives that their friends did as they started school. There were few people I could leave Tim with. My thought though, Jill, is please try not to take away too much from Izaac. My biggest fear was that Amanda & David would resent Tim if they had to do without all time because of Tim. I realize it is not Avery's fault that she is ill, but young children can not understand why thier lives have to change so much because of their sibling.
I hope you don't take this wrong. But, as Avery gets older, she will need to realize that the things she can and can not do are for her own health but that other children can still do them. It isn't fair, the illness isn't fair, but she will learn to adjust. I would definately try to find a time to take Izaac for ice cream and hopefully find a way for him to continue football. Yes, David & Amanda had to give up many things, but I did my best to keep their lives as normal as possible.
As adults, now, they tell me they believe I did a good job. There were many dissapointments during the years, but overall they grew up happy.
Corinne
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Post by tarak on Sept 12, 2006 8:44:17 GMT -5
I would like to offer the perspective of a sibling of special needs children. My sister is a dwarf and when she was very young had to have many surgeries on bowed legs. My brother has fetal alcohol syndrome (he was adopted) and also has a form of autism. I don't have any hard feelings towards my sibs now as an adult. My parents treated my sister as a normal kid, expected the same out of her as she was able to do with minor adaptations (stools all over the house!). There was a time when she was allergic to EVERYTHING (or so it seemed). We all had to have goats milk because she couldn't have cows milk. NASTY!!!  So, once we found out how yucky goats milk was, Mom and Dad let the rest of us have cows and she had to have goats! Perhaps you or Daddy could take Avery to a different room for a cuddle and story while Izaac has his ice cream (or you and he have those popsicles you love!) The long and short of it is that kids are pretty resiliant. I know you don't want to buy Izaac all sorts of stuff just because Avery has extra stuff after a hospitalization. I remember during one of my sister's surgeries my grandparents came up to take care of me (and maybe my baby sister, though I don't think she was born yet, might have been just me). They left a little something for each day they anticipated being gone (they traveled to another city, so were gone for several days at least). Cheap things like coloring books and stickers. As for football, I would try to find a way he can still participate. Is there a friend's mom who can stay with him? Talk to the coach and explain the situation. Hopefully they will make some accomodations for your special situation! I am glad that lil' Avery is doing better and hope you are too! |
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Post by my4boys on Sept 12, 2006 8:50:57 GMT -5
I agree with the others~! Maybe allow Izaac some ice cream while you are giving Avery a bath! I know Izaac loves Avery very much, and you dont want him to come to resent the things he has to miss out on. Of course, some things you cant help. But, I would be willing to bet that if you talk to the football coaches, arrangements can be made so that Izaac can still participate without you needing to be present. I would do everything in my power to make that happen...He already has to deal with his OWN issues (occupational therapy, etc) and this will be a great thing for him! His needs, though different, are equally important, not that you dont already know that!!!
Anyway, I know this is all new for you and you are trying to adjust your lifestyles! Just some suggestions on how you can adjust things for Avery without Izaac having to give up TOO much!
Thinking of you!!!
Blessings~
Wendy
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Post by wuvmyangel93 on Sept 17, 2006 3:25:48 GMT -5
Definitely talk with the coaches and explain the severity of Avery's asthma. You can't lock her in a bubble and taking her in/out of the house to the car even just for daycare will affect her asthma.
If you must stay the whole practice can't you and Avery stay in the car watching a movie on the portable dvd player or reading books etc.
Izzac needs the football for motor skills development and he loves doing it. Yes he loves Avery, but you don't want him to be forced to chose between the two.
Avery will also be allowed icecream and popsicles later on, but for now how about special avery treats at the same time Izzac gets his cold treats or do her bathtime at the time he has his special treats.
Izzac has his own "special" needs and shouldn't have to give up everything.
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So, once we found out how yucky goats milk was, Mom and Dad let the rest of us have cows and she had to have goats! 