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Gizmo
05-22-2011, 09:38 PM
I don't know if I am posting this in the right category, but here goes... My heart is torn in two this week. My 21 year old daughter graduated last weekend with honors, magna cum laude, got a Fulbright scholarship to study for a year in Germany and is getting married to a wonderful man in July. My 19 year finished high school in December and we had a party to celebrate, but there was no ceremony. She should have graduated last May with her friends, but was too sick to go to school full time. She started college in January, but wasn't able to do it and we moved her back home after 5 days. She could have walked at graduation with the class of 2011 on Friday, but we thought she would be in college, so we didn't buy the cap and gown last fall. She doesn't really know anyone in that class, so it wouldn't have been the same anyway.

I am so sad that my youngest missed wearing a cap and gown, missed walking (wheeling) with her friends, missed all the pomp and circumstance. It is especially painful seeing everything that her sister has achieved, and knowing that if it weren't for her many medical problems, she would be doing the same. I want to dance for joy for one child and sob in my pillow for the other. We are planning a wedding for one, and finding a service dog for the other. One is going to Germany to study at a great technical university and the other will make yet another trip to Baltimore to discuss having neurosurgery. It's like emotional ping pong! To top it all off, my husband and I both got potentially bad news about our health last week.

giggle
05-22-2011, 10:54 PM
: ( A BIG cyber hug to you! I am familiar with the bitter sweet. A service dog is a brilliant idea, I am sure that will brighten her life up a whole heap : ) I hope to one day help train service/assistance dogs. I hope you and your daughter would see an assistance dog as a positive rather than a negative. Just think, she will have a buddy that can go everywhere with her.

And hey, Im 30 in a month and Im still not married LOL ^_^

I worry sometimes about the future of my little one. I know things will be harder for her than the average person... I just hope to put her out there in the big wide world as unburdened as possible. Because I went out into the big wide world too early and well and truly too burdened and had to try to equip myself for life. In this age, that is impossible. For my parents generation there were so many possibilities if you started out with nothing. But starting out with nothing these days is a recipe for a life time struggle.
It sounds like you have given both your girls a fantastic start, you are a fanastic mum!!

Im sorry to hear of you and your husbands bad news... I hope you know you can vent it here whenever you like.

Linda From Australia
05-23-2011, 05:43 AM
Don't you just want to some days go for a drive in the country, find a farm, walk into the middle of a paddock, find a pile of horse poo and just pour it over your head?

No? Well, life sure is full of "stuff" and it doesn't matter how hard we try to get that "stuff" off us, it just sticks.

Thinking of you Gizmo, life is just "stuff" sometimes

rob
05-23-2011, 06:16 AM
Hi Gizmo,

I think getting a service dog is pretty exciting, and an opportunity to bring a great friend and companion into your daughter's life. I find that people with disabilities often shine in ways they never would have if they were healthy. I know a local kid who is mentally disabled, and he has two older siblings who are both very successful in their respective careers which are highly technical. He works at the grocery store, and at first glance it's easy to feel bad for him because of the perceived disparity between his accomplishments, and those of his siblings. Well, once I got to know him I felt pretty silly for feeling bad for him.

In his world, having this job and earning the respect and friendship of his co-workers is just as big of an accomplishment for him, as those of his siblings. It was thought when he was younger that he would never be able to live on his own much less function at a job. When you talk to him, and ask him how he likes being a grocery clerk, he'll correct you by saying "I'm not A grocery clerk, I am THE grocery clerk". He's a hard worker, he loves his job, and the store owner tells me he's one of his best employees. He found his niche, and he shines.

Your youngest daughter just needs to find that special place where she shines while doing something that's within the limitations placed upon her by her health problems. And, she's got a head start because she has the advantage of having a great mom to encourage and help her along the way.

Rob

SandyR
05-23-2011, 07:20 AM
I don't know if I am posting this in the right category, but here goes... My heart is torn in two this week. My 21 year old daughter graduated last weekend with honors, magna cum laude, got a Fulbright scholarship to study for a year in Germany and is getting married to a wonderful man in July. My 19 year finished high school in December and we had a party to celebrate, but there was no ceremony. She should have graduated last May with her friends, but was too sick to go to school full time. She started college in January, but wasn't able to do it and we moved her back home after 5 days. She could have walked at graduation with the class of 2011 on Friday, but we thought she would be in college, so we didn't buy the cap and gown last fall. She doesn't really know anyone in that class, so it wouldn't have been the same anyway.

I am so sad that my youngest missed wearing a cap and gown, missed walking (wheeling) with her friends, missed all the pomp and circumstance. It is especially painful seeing everything that her sister has achieved, and knowing that if it weren't for her many medical problems, she would be doing the same. I want to dance for joy for one child and sob in my pillow for the other. We are planning a wedding for one, and finding a service dog for the other. One is going to Germany to study at a great technical university and the other will make yet another trip to Baltimore to discuss having neurosurgery. It's like emotional ping pong! To top it all off, my husband and I both got potentially bad news about our health last week.

When you get to Baltimore, go to the Inner Harbor and visit the top floor of the aquarium and sit amongst the rainforest and the butterflies, then walk/wheel over to Phillip's to slurp up some chowder and crab legs and if you have a little time take a ride on the water taxi and just breathe in some fresh air. If you have to becuase of time and scheduling, break these things up over a couple of days or just pick the one that sounds best to you and do that. This won't change anything about your situation but it'll give you a little time to de-stress which it sounds like you desperately need.

As for your daughters - it's understandable for you to be upset and compare them and see how one is "robbed" of what the other is so richly blessed with, especially becuase, as a parent, you had dreams and desires for your daughter that were planned out long before she was here and some of the simplest ones (like wearing a cap and gown) probably seemed like they should have happened regardless of the other medical situations. The thing is, it doesn't sound like your daughter feels a loss of the "could have beens" and "what ifs". There's a line in Letters to Juliet "...'what' and 'if' are two words as non-threatening as words can be, but put them together side-by-side and they have the power to haunt you for the rest of your life: What if?"

SandyR
05-23-2011, 07:23 AM
ps - congratulations to both your girls on their graduations and on the engagement! That is truly great news to celebrate!

Gizmo
05-23-2011, 04:36 PM
Thanks, everyone, for the encouragement. We ARE definitely celebrating, but that doesn't mean that it isn't painful for our younger daughter to be missing out on so much that is important to her. The litter we will get the service dog from was born a week ago, and we will get him/her right after the wedding. The promise of that puppy is the glue that is holding our daughter together through the disappointments and the anxiety about having her sister move away. Right now she is too sick to work or even be a reliable volunteer, so finding her place in the world is going to be a challenge. We don't commit to anything anymore because we don't know from day to day what she will be able to do. @SandyR - we've traveled to see specialists in Baltimore 3 times now, and each time we make it to Inner Harbor to eat crab cakes. The aquarium is also beautiful, and on our trip out there 2 weeks ago we went to the Smithsonian. Each trip has gotten better, as we have found the right specialists to hopefully help her. Johns Hopkins was a disaster, but she has some great doctors now.

giggle
05-26-2011, 06:17 AM
Maybe think about encouraging her to 'work from home'? If she is an artist, get her set up with an ebay account and she can sell what she can manage to do on ebay :) Even if she makes bracelets or jewelery to sell on ebay. Some kind of no pressure hobby type work that will make her feel a bit productive. I know its no 'career' but feeling useful is important. Pet clothes are pretty popular at the moment, if she can sew she could make pet clothes :) Or windchimes, or bird toys? lol I have a million and one crafty ebay ideas. :)