I just wanted to take a second to say “Thanks so much!” for the emails of support that we’ve received since starting this blog.  I don’t know how so many people have read it so quickly… but our story has touched some of you too.  I thank you for the stories of encouragement and hope; for explaining, compassionately that “you’ve been there”; for letting us know that there is someone out there that goes through what we go through.

This nightmare is so rare… there just aren’t many people (especially – locally) who can relate, empathize, or even come close to understanding what this all entails… It is so hard to share – even with our close friends and family.  And it is even harder to ‘bear’ alone.

So… Thanks again.

I would like to share snippets of the emails I received (I hope you don’t mind)… but I will, of course, honor the privacy of the person’s who sent it.  I will not allow the names included in the emails to be put here.  I just think they are worth sharing.  Maybe, someone else out there is having some of the same trials and tribulations… and it would be nice to see the warmth and understanding the rest of us have for each of us going through this.  So… here are a couple of snippets from the responses I received:

“I can’t tell you how much your story relates to ours.  As I read your blog, all the emotions and frustrations that my husband and I have experienced with our son came flooding back, and I couldn’t help but sit and read and cry along with you.  Glaucoma is such a horrible sentence, and I suppose someone else would say there is alot worse things that our children could have.  All I know is what we deal with daily, but I just wanted to give you an update on my son, in the hopes that it may give you and your wife some hope as well.  …We were given the same option, Valve implants.  Nothing else had worked and (after) 11 surgeries his pressures were still high.  Round the clock drops and patching were our life.  At 18 mos. our doctor decided implants would be our best bet.  We were crushed.  I could not bear the thought of anything foreign in my child’s eye.  But, I am here today, 9 years later, telling you that the implants have been a blessing.  We saw instant results.  We still have to maintain a drop regimen, but all in all the implants by far have been the best thing that could have happened to our son.  I wish we had chose them right from the start…  Again,  I just wanted to write you and your wife to let you know that there is hope.  Eventually, you will settle into a routine of acceptance, this is not to say that you won’t have worries and concerns, but life will get easier.”

And another wrote:

“Wow, I just read your blogs.  It’s amazing how we can all relate to the same things. My daughter is 5 now, and was diagnosed at 13 months, but was born with the disease. She lived with extremely high pressure, migraines and cloudy corneas for 13 months…she saw my face for the first time 2 days after her first surgery.  I’ve heard from so many people the same line….God only gives you as much as you can handle..I also believe its a load!!!  …   I don’t know how God thought I (can handle all that has happened…) but I did, and I have, for the past 4 years of surgeries and endless eye drops, glasses, patches….its a never ending battle with this disease.  I used to be depressed and sad all the time…I’m 24 years old!!! I’m not supposed to be depressed!!! But I’ve met so many people that I can relate to…who have the same worries I have..who go through the same daily struggles!  …   I hope your son does well. I read about the valves in your blog. They’re not as bad as they seem. It helped my daughter out so much. Her pressures havent been over 17-18 since she’s had them in. I’m amazed!”
Well… Once again, “Thank you…”  It most definitely helps to hear from all of you.  We are still extremely depressed… and we cry often… But it is really great to hear encouraging stories from others who have been there!  Good luck… to all of you too!  We will keep you all in our thoughts!
Chris
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