There are days I forget that Tommy needs a contact and wears a patch. How great is that? 10 months ago, I couldn't even imaging that THE EYE wouldn't be the sole center of every thought, every obsession, invading our lives. I am happy to say that it doesn't. But, there are days... oh are there days.
There are days where we've gone through 5 patches by 7:30am. Where the skin around his eye is so raw and red, I feel guilty about his lot in life.
There are days where I've put socks on both of his hands (after we've gone through 5 patches by 7:30am!) and he rubs his face on anything he can, attempting to get the patch off. Oh how my heart breaks.
There are days where he just cries when he sees me coming with the patch. Guilt and heartbreak.
There are also days where strangers remind me... sometimes it's just an innocent "what is wrong with his eye?", sometimes just a stare, occasionally a stupid comment, and sometimes they quickly look away. That usually brings anger.
And there are days where we've lost yet another contact. That makes me feel stress and despair. How did I let another one get lost? Where could it be? Obsessively I look- sometimes even days later. Meanwhile, Tommy is blissfully patch free and contact free. I can only imagine his joy! No uncomfortable contact.... no itchy patch. Sometimes I'm even able to watch him enjoy it without frantically searching for that $250 contact lens... without wondering if the patch-free day is hurting his vision. It is all so unfair.
But the best days are when we all forget.... (and yes, he is contact free and patch free after we lost a contact on vacation!)
He is adorable, absolutely adorable. I was walking through the store the other day. I was chatting with my boys, probably looking a little silly. Oh well, the boys were happy. Austin was patched, but like you say, it is such a part of life. I had forgotten. This 9-10 year old boy was laughing at him and making fun of him. It took me a minute to realize what the kid was making fun of. It made me angry, mostly at the mother that was letting the child behave that way.
ReplyDeleteYes! There ARE days when the contact and patch are so woven into our everyday life that I forget. And oh what a sweet feeling it is. BUT then there are other days, days I want to forget, days that slap me back to the reality that this IS hard and so unfair. I really struggled in the beginning with the roller coaster ride that is life with Easton's Eye, but now I know to just expect that we will have both, good and bad days. As much as I wish the bad days would stop, I've learned they just make the good days that much sweeter.
ReplyDeleteKeep going, your doing great!!!
Hi, I am friends with Missy and Amanda and just found your blog through Littlefoureyes. My son (now 2) also had a cataract, but we didn't find it until he was 11 months. He had surgery last Feb and has been patching all but 1 or 2 hours a days since then. I promise I understand your frustration!! I just wanted to say you are doing awesome and hang in there!!
ReplyDeleteI love hearing your updates, thoughts, and reflections as you travel this road. You are persevering in a beautiful way! I'm certain that many have already been encouraged, and many more will be encouraged in the future by all that you give with each post.
ReplyDeleteTommy is so precious, and we love you all very much!
Hi Tommy's Mom,
ReplyDeleteI just found your blog and just read it back to front. My son has exotropia since birth and we have been patching him since he was 6 months old. It seems as if he and Tommy are practically the same age :) My little guy needs to patch 3 waking hours a day which often turns into 4 or 5 hours if he falls asleep for his nap before the time is up. As you have mentioned many times one of the most heartbreaking things is seeing how the skin becomes so irritated and torn up from the adhesive on the patches. I was searching and searching for some kind of solution and think I have found it! I am sharing in hopes that it will help Tommy and others. Nexcare makes a product called "Active Waterproof Skin Cover" it is essentially a film breathes and allows the irritated skin to heal. It can be left on for up to a week while the skin heals and acts as a barrier between the patch and the skin. It can be cut to fit around the outside of the eye. It is a little tricky to apply and it took me a few tries until I got it right. Also when removing the patch you have to be careful not to pull off the film, but I found that by pulling it off from the edge that was on the film itself did the trick. I only use it when the skin gets irritated, but then it is a godsend. Best of luck on your journey and thank you so much for sharing.
Thank-you for the advice. I'll have to find some...
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