DeannaI keep getting behind on comments. I truly apologize, ladies.
Last year, my second little miracle baby, now seven years old, had her first Grand Mal seizure. Since then, we’ve had to work hard to figure out what is best for her — medication or not, special help at school, what we should do. Amidst this, her dad and I have decided to finalize our separation with divorce.
And so, life is a little rough over here. Elizabeth was a twin, and her twin was lost at 10 weeks. When the neurologist first talked to us about Elizabeth’s condition, which involves brain malformations present from birth, she asked, “So what happened when you were 10 weeks pregnant?”
So we don’t know if the loss of the twin was part of what disrupted Elizabeth’s brain development. Or if her twin had it too, and didn’t survive. The nuerologist is continually surprised at how normally Elizabeth has grown and advanced despite a very unusual brain.
Anyway, this is my life. You are here because yours is hard. I only tell you these things by way of apology. I worry I will have to work full time soon, and the site will suffer. I’m working hard to get my publishing company going so it can help me stay focused on this work, books about miscarriage, this site, and helping other grieving moms. It’s struggling too. It’s all a struggle. It may not be enough. I will do the best I can. So will you. Because that’s all we can do.
If you’d like to learn more about Elizabeth, here’s a video I made about her condition.
You do what you need to do … you have such a wonderful site here with so much information. We are blessed to have you. Your site helped me so much after my miscarriage/d&c one month ago … I didn’t know what to expect until I came here. Thank you. Take care of your babies, and your self. We all know what it is like and we understand.
Love to you,
Tanya
My first pregnancy ended in miscarriage in February. Since then, I find myself returning to your site at various times for new challenges and new questions that arise. I am so sorry to hear about your daughter and all the difficulty you and your familly have been facing. My impressions of you from your many posts are that you are an extremely smart and extremely courageous woman who has managed to turn her pain into an opportunity to reach out, educate, and help many other women and families out there. Please know that you have a community of women behind you, thinking of you and rooting for you and your family.
Hi – I wonder whether you have considered asking folks to donate to your site. i also found the information really helpful when I first experienced a miscarriage. I’d be happy to help donate to help you stay focused on this work.
Hope things get easier sooner rather than later.
Ursula
my name is Elizabeth and i too have grand mal seizures.my first seizure was at the age of 16. I went through all the test and been on several different medication.my seizures are under control with the med’s i’m on now. The new med’s i was put on is called lamictal i was put on this medication when i found out that i was expecting my first child.I had a “healthy” baby so i thought.i brought my son home and a week later he had a minor seizure, but at that time we didnt know what was going on and what was wrong with my son.we later had him taken to a childrens hospital on portland Oregon. they took and kept him for two days did test and told us that he has a mass on his brain. which is causing the seizures.it now has hit me that i know what my mom when through with me and and my seizures.and so on with her and my grand mother and grate grandmother.
i can relate to Elizabeth and you as mother and all the hardships and trouble woundering if my child is okay and will he servive.what tests their doing and what is this like for the child.
im sorry to hear about the miscarriage and i hope you can find peace.and know that its not your fault that you miscarried.
Elizabeth
You have a very good site. I come back now and again as I haven’t take it off of my bookmarks. I’ve had a healthy a baby since my miscarriages and have 4 children all together so my losses are not front and centre anymore. But I do think of my angels and still look for ways to remember and honour them.
Just yesterday Pampers sent me a free pull-up diaper for my would have been 2 year old that I lost in my first miscarriage. For some reason I was never able to completely remove that pregnancy registration from their database. Since I have a 1 year old, it didn’t hurt too much but I digress…..
I do hope that your struggles lessen and particularly that your your daughter’s condition improves.
I like your site but it always makes me cry for one reason or another.