We're AVM Survivors, Here For Your Support...

The future

What will this be like? Will they drive, go to college, have a job? I guess we never know these things without the AVM challenge, but the questions run deeper when it happens. Any thoughts on the future, and what it may hold? How can we be the kind of parents that offer them the best opportunities in this situation?

I wish blessings, grace, kindness and patience to all,

Mama

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Replies to This Discussion

Permalink Reply by Melissa Tolen on January 27, 2010 at 1:29pm: Thanks Aris!
You summed it up beautifully! Every since I've been handling my daughters "situation" like this, life has been soooo much better and easier to live! Although, the phone part... I have to say, I refuse to keep our cell phone turned on when we had to be at the hospital for any of our daughters embolizations or other proceedures. Especially when she is in recovery. Plain and simple, I want to be there for my baby when she needs me and let her know that she is my number 1 priority. Other than that... I agree!; ▶ Reply to This

Permalink Reply by Melissa Tolen on January 27, 2010 at 1:38pm: The only reason I worry about my daughter having children is the possibility of her AVM rupturing during child birth like so many other mothers' un-detected AVMs do. That being said... my mom had c-sections, I had c-sections... I guess my daughter can just follow our lead. But, that is so far in the future, who knows what advances in science, advances in childbirth, and knowledge of AVMs may be? Like everything else, we'll just have to wait and see.

Julie Baker said:
I am most worried on whether or not my children should have children. I know it seems early in life to be contemplating this, but what am I supposed to tell them all?; ▶ Reply to This

Permalink Reply by Rebecca on January 27, 2010 at 9:59pm: My daughter is 11 now. Although her AVM was removed, she did suffer some damage to her vision. The damage is so minor, but since we will fight for every inch, it does worry me. It will probably never be safe for Dani to drive. She has difficulty negotiating the halls of the middle school and routinely runs into people or knocks things over that she simply doesn't see. We live a rural life and it is difficult for her to imagine life without driving a car. When the time comes I will probably pressure her to go away to a big city for college so she can experience living someplace with an efficient mass transit system. We've talked about how much cars cost - purchase, insurance, maintenance, gas - and how one could apply some of that money to taxis and gas money for friends that give a lift. What I don't think we can anticipate is medical and technical advances that may change our children's situations in ways that we cannot even imagine now. It's most important to teach them to face these challenges and to know that they don't have to face them alone.; ▶ Reply to This

Permalink Reply by Holly Tautz on February 13, 2010 at 9:31am: Wow! I've been having the same worries and wonders and thoughts myself, ever since the doctor called and said that they found something and it appeared to be an AVM.

My 12yo son is like me in that he has plans for his life already! (sorry to pass that bit of neurosis on to him) He wants to attend Indiana University for his BA in Journalism and then Columbia for his MA and after that he wants to work as a sportscaster preferably for ESPN! He also wants to play football during high school and college and he wants to race cars.

Now, I think we'll all be happy if he just comes through this okay.; ▶ Reply to This

Permalink Reply by Melanie & Joshua on May 10, 2010 at 8:20pm: The experts at Children's Hospital Boston told us our son's children would have a 50% chance of having an avm because he also has capillary malformations (several red birth marks)

Ben Munoz said:
Julie, if you are worried about your grandchildren having an AVM, most experts agree that AVM is not hereditary. There should be no reason to worry about your grandchildren having an AVM. Ask your neurologist of course.

Julie Baker said:
I am most worried on whether or not my children should have children. I know it seems early in life to be contemplating this, but what am I supposed to tell them all?; ▶ Reply to This