Sunday, June 2, 2013

Thank you!

Thank you to everyone who has taken the time to view this blog.  And after posting a link on Facebook I was completely overwhelmed by the positive responses and support I received from friends and family.  My brother who is a writer and not easily impressed( :)) had amazing things to say about it and that made me feel great.  My sister-in-law texted me first thing this morning to say she loved it.  My mom, aunts and cousin shared the blog with their FB friends.
So a huge thank you to all of you. 

A good friend of mine mentioned that she has never heard me speak this intimately about the challenges I face,.  That is true.  It is not a subject I talk about very often because it is not the main focus of my life. It is something I have learned to deal with and as they say "It is what it is."
Lately, though, I have been feeling like there is more I can do to help others.  I used to be very active in fundraising for eye research..  As a child, I took part in the Schepend Eye Research Institute's Swim for Sight for several years and raised a good amount of money.  A few years ago I participated in the Foundation Fighting Blindness Vision Walk (in NYC one year and Boston another.)  I am planning on walking in the Boston Walk this fall as well.  I feel good when I do these fundraisers but I want to help people on a more personal level. 

I do not feel like you hear all that much about  retinal degenerative diseases unless you or a loved one are affected by one.  I have occasionally heard of someone who is legally blind and accomplished some amazing feat like climbing a mountain or completing a triathlon.  I can't say I have done any of those things.  Although I did go sky diving many years ago (tandem of course!) and I loved it! I am just a normal person (debatable) living my life, raising my kids, trying to keep my house organized, etc.   I have not done anything heroic but I do face challenges every day that many others face and can be scary....especially to those who have recently been diagnosed with a visual impairment.  

It seems like the general population sees it in black and white...either you are blind, you can see well or you wear glasses so that you can see well.  It seems hard for people to grasp that a visual impairment might not be curable.
Hopefully sometime in the future there will be a cure for retinal degenerative diseases.  I know that researches are working hard on it and there has been some encouraging advances lately.
Maybe when I am 75 years old my daughters will be teaching me how to drive a car!  hahaha

Anyway, thank you again for your support and please share this with friends who might be interested.
Take care,

p.s.  I can't seem to fix the text background color...sorry!


Faber Hoods said...

Hi Heather, its Matt.

Sherri and I have known you for about 7 years now and I honestly never think of you having an impairment. I am aware that you have one, but I don't think of you or look at you any differently than any other friends we have. You took care of our son for almost 2 years and I never once thought of it being an issue. You are an amazing Mom, daughter, wife and friend and I am proud and applaud you, that you are speaking more about your struggles on this blog. Matt

Heather said...

Hi Matt! Thank you! I love you guys! And I appreciate what you said!

And my vision does not prevent me from seeing how adorable both of your boys are!!

See you soon!


Alanna said...

I am having a hard time getting out of bed in the mornings. I went to a counselor yesterday and she said I had every right to grieve and I am doing better than she would expect given the diagnosis. It is odd to grieve for something I am just beginning to lose. I feel like I'm going to get into a bad car accident and there is no avoiding it. I don't know how much of an adjustment it will be after it happens. No one can tell me. I think about it all the time. How will I put on my make up, how will I try to keep eye contact with other people, will I seem as different as I already feel, will my husband feel differently about me, will my kids be embarrassed if I can't read something in the store? I love my family and I don't ever want to be a problem for them. I am angry because I want to see and envious of everyone else who doesn't have to go through this. I expected trials in my life, but never was going blind something I thought I'd ever face. All of this aside, you give me hope in a future that still terrifies me. you have already helped your one person. Thank you...

Heather said...

Alanna, I am so sorry for how you are feeling and can relate to every feeling/fear you mentioned. What I want to tell you now is that you are not alone. Your family will support you and the community of visually impaired people is with you. Your kids love you for you and that will not change. There will be changes and adjustments but you will face them with those who care about you.

I have had my share of depression. A big part of my anxiety while pregnant and after my second daughter arrived was how life would be with me not being able to drive my kids around. I was focused on that and getting myself worked up about it. Then I realized I was going to miss out on some of the most amazing moments in life if I let it eat away at me. I will always wish my vision was better and that I could drive. But while I wait for the scientists to find a cure, I need to enjoy myself and get more used to relying on others for help. Believe me, I do not like it but for every appointment, meeting, school activity, I need to get a ride. I am so utterly blessed that I have the family and friends that I do. People who you are close with will not see you as a burden. I have had this argument with my parents numerous times.
This is definitely going to be a difficult time for you but you will get through it. Your four kids will love their mother forever.

By the way, my husband and I were just talking and when I mentioned Utah he said something about the skiing out there, and then said "tell her you ski"
I thought that was a good idea too because it shows what I CAN do. And I am actually pretty good! :)

So although we do not know how the vision loss will progress, we can still be active and have a fulfilling life. Just different than you had pictured.

Also, if you wish to email me off the blog privately you can certainly do that

Mary Jane's Playcare said...

Alanna, Heather is so right. No one will consider you a burden, Honey.
I am so sorry you are going through this devastating time. Really only those who have gone through this can relate. But, as Heather's Mom, I have to tell you that we all consider ourselves blessed to have her and her precious family.
This is so raw for you right now. And you are dealing with a lot of uncerntainty. Please keep talking to Heather, your counselor, your family and friends. Tell them your fears. Let them comfort you and reassure you. Believe them. Talk to your husband about all the little things ( including make up). Maybe you both can come up with a game plan.
Your eyesight is not so bad right now. Like Heather said it may take quite awhile to change. I know that is of little help...but maybe things won't get as bad as you think.
And, as for your kids, they will love you always. They will grow proud of the Mom they have....low vision or not.
Good luck, Honey. You've already taken steps to help yourself out. You have every right to grieve and be angry but please don't stop living your wonderful life.
Heather's very proud Mom.

Mary Jane's Playcare said...

Ps, hope it is ok that I talked to you on Heather's blog.

patricia fuchs said...

Heather, thank you for sending me your link. I think you are a beautiful writer. Keep up the good work.