Replies to This Discussion

Permalink Reply by Julie Baker on April 15, 2009 at 10:09am

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?

Permalink Reply by Nea's Mom on April 15, 2009 at 12:43pm

It's true that we never really knew what the future will hold... but we all thought we had an idea of where our children were headed and have to now accept that we/they may have to redefine that and that's hard.

Permalink Reply by Joy on April 15, 2009 at 5:10pm

I think what you do is take it one step at a time, one day at a time... when I stop and think of all the possible scenarios, it is too overwhelming. I just say that whatever comes next, I will handle it somehow no matter what.
As far as having children themselves, let's hope that the future brings some advances in prevention and treatment. Who knows. There are just NO easy answers with this condition. It's all just crazy. My thoughts are with you both.

Permalink Reply by Ben Munoz on April 15, 2009 at 6:13pm

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?

Permalink Reply by soniya mundy on April 17, 2009 at 11:40am

hi mama,im so glad just to have my son hear with us.all i ever asked for was that he survive and the future will be what ever its meant to be.the road ahead is long but its the most wonderful thing in the world to have the road to go down.i believe our children survived for a reason and the reason is to bring us all so much love and joy.i know that all us parents will give our precious children the most love and care in the world and never take them for granted.love and light to you all xxx

Permalink Reply by Kaci King on April 30, 2009 at 8:35pm

Mama - just wanted to send a big hug to you! I sure understand your questions. Where is the AVM?

We too are new to dealing with this and seems like the more questions I ask, the more that surface.

Our son, Austin, has a facial AVM (under his chin). I wasn't so sure it was one, but after reading more, talking to more people, I'm really sure now. Tonight I noticed more swelling in the area and lots of visible veins. (sigh).

Hang in there. We can do this together!

Permalink Reply by Bianca Young on May 15, 2009 at 12:48pm

soniya mundy said:

hi mama,im so glad just to have my son hear with us.all i ever asked for was that he survive and the future will be what ever its meant to be.the road ahead is long but its the most wonderful thing in the world to have the road to go down.i believe our children survived for a reason and the reason is to bring us all so much love and joy.i know that all us parents will give our precious children the most love and care in the world and never take them for granted.love and light to you all xxx

Permalink Reply by Bianca Young on May 15, 2009 at 1:07pm

You have just said it it all !!!!
But yes I still worry about my sons future but I hope life will be good to him. I feel he has earned/fought for his place in this busy world and he is taking it one step at a time. People/friends often ask what do you want or what would you wish for? I always answer I've already got it and enjoying it as we speak(my Connor).
I finnally have trust in him that he will not give up or give in so he is already infront of many other confused kids and he also has a family that will help him every step of the way.

Permalink Reply by Lisa Wilson on June 16, 2009 at 8:48am

hi
the future? tough question for us all. we have to face the "what if?" question and have been since my daughter was found to have an avm last september. thankfully she hasnt had an emergency situation and had a bleed but we are faced with "well you could have surgery or not" which has left all the hard decisions to us as a family of whether to make her feel worse by going through surgey and worrying about all the risks and complications associated with it. at 14 she wants to get rid of it to be like everyone else but doesnt want to go through all this and be different. there is no easy answer we are stuck between the 2 sides of the arguements and can only hope our decision to go ahead and treat this will be the right one.
i think your questions are valid and must run through the minds of us all as parents with children experiencing this.
lisax

Permalink Reply by Beth on July 17, 2009 at 10:31pm

Hello. I am 57 years old. My AVM(s) are massive and in my right leg. (I get conflicting information as to how many AVMs I have.) Due to skin ulcers, my right leg was amputated below the knee when I was 23 and I felt MUCH BETTER afterward than I had in a long time. In fact, I have often said that I wished I had had the amputation done sooner. I have two beautiful daughters, one aged 37 and one aged 23. Due to divorce, I basically raised my daughters on my own. They are very healthy. At age 19, I was told I was a "candidate" for Congestive Heart Failure and was actually given the diagnosis at around age 47. However, I still do not have symptoms. My heart is not in failure per a full cardiac workup I received in March of this year. Completing college was difficult for me for many reasons including difficulty getting to class and often needing all of my energy to deal with painful health problems, but I finally finished my degree at age 42 graduating Summa Cum Laude. (What with all of the opportunities to attend college online, I think I would have an easier time completing it today.) I am a supervisor working full time, earning a good living and having excellent benefits. I have volunteered with Girl Scouts, YWCA, Junior Achievement, as a Guardian Ad Litem and as a Sunday school teacher. I am a source of emotional support for my friends as well as the members of my family and they support me, too. If you read my bio, you'll see the past year has been hellish for me but, overall, I have had a very good life. Besides, this past year has given me an even greater appreciation for life. I also appreciate myself much more knowing I am one tough cookie! At any rate, I wanted to let you know about my life not to brag about myself, but to assure you that your children can have full, productive lives. I hope I have helped.

Permalink Reply by Mama on November 19, 2009 at 1:15am

I am so glad that this thread brought up so many relevant topics. As I read it again now, I realize how incredibly scared I was when I wrote it. There were so many things that seemed unanswerable about my son's future. There are a lot of things I still don't know. I am happy to report that he is in full-time school, doing fifth grade math (at the time when it happened, the stroke left him not knowing what 2 +2 was), socializing, getting invited to birthday parties, running the "marathon kids" program, and leading a normal life. Happiness has returned here, and we are grateful for every moment of normalcy that he has worked so hard for. He is at no risk for seizures, and swims, plays and runs as if he never had this taken away for some time. He is still brain-injured, and has some handwriting and speech issues. Its not over yet, but its much closer to gone.

If I have any suggestions, they would be

1) God, even if you never had a relationship, start now - not necessarily christian, muslim or jew etc, (unless this works) think what will work for you. Earnest prayers set out intentions, and good fortune follows the earnest desire for better-ness.

2) take care of yourself. You are like a tree that they can climb. If you are flimsy or doubtful, there is no branch to reach for. Keep yourself ok. They can only be as ok as you are. Take baths, exercise, eat good food and take some time off if you need to. Cry on your friends, and play with your friends. Remember yourself. They don't want you to forget who you are, and you must believe in yourself completely, like a lion.

3) Keep your sense of humor. Nothing bonds two beings and keeps the monsters at bay like a good "inside" joke, or a character that only your family knows about. Keep your family mythology alive.

4) stay on task, and keep the phone calls rolling. MAKE A LOT OF PHONE CALLS. You are an advocate, and you must stand up for the situation that your loved one cannot stand up for. Stay on the phone, stay on the emails, keep communicating with the caregivers and teachers of your child. Put these folks in touch with each other, make sure that everyone understands what is happening. Ask a lot of questions, and get as many answers as you need. If you don't have enough answers, keep asking questions. Keep spinning a whirlpool of possibilities, and don't ever stop.

5) Setbacks are opportunities, there is always a new moment for a new lesson.

6) Your child is counting on you to be stable, strong, loving and proactive. Not perfect.

Just some lessons I had to learn, and I hope they can help with the stride of anyone who finds themselves here with the same challenge.

Praying for the light to show on any streak of darkness...

Love, love, love.

Aris (Mama)

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!

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