Lately, Ive been remembering back to the day we learned about Scott’s eyes. I remember how hard that day was. The day they sent me home from the hospital I thought Scott was blind and deaf. I put a smile on my face but inside I was feeling so many feelings. I was heart broken, scared, worried about what would happen when he was older and so many more feelings! At 4 days old he was diagnosed with a unilateral congenital cataract and at 4 weeks old he had surgery to remove the lens in his eye. Those 4 weeks were LONG, HARD, and SCARY! I think I cried more than I had every cried in my life.
At his very first eye appointment I was told we would be patching, doing drops, a contact, glasses, checking for glaucoma and on…. WOW! My mind was in a whirlwind. How can I do all that with my 4 week old baby! Im just trying to make it though 1 sleepless night, I didn’t need to add the stress of putting a contact into his eye!
Now flash forward 4 and a half years. Today Scott is an active, loving, imaginative 4 year old boy! His congenital cataract is a side thought. A part of our lives but just a very small part.
If I could go back, I know I would show myself a picture of Scott today! Wow, just look at him! I mean look at him! He is so AMAZING! He has been through so much and yet he teaches me every day!
If I could go back in time, what would I tell myself? I would tell myself that IT’S GONNA BE OKAY!
I would also tell myself:
° Its okay to cry!
° It will be hard. Dont get me wrong, but you will make it!
° It will get better, easier – I promise it will get easier.
° Find a friend.
° Talk about it with others who care. Join a support group.
There are so many things I wish I was able to go back and tell myself. Ive had this post written for awhile, but ive been waiting to post it. Feeling like there is so much to say but no words to express it. So many feelings happy and sad. Then this song came through my Facebook feed this week and it made me so happy! I love the Piano Guys and what a great addition to my feelings. “Its going to be okay!”
I asked a few of our amazing followers what they had to say. Check it out. There are so many people who have been through so much, here are just a few wise words from some amazing people!
“If I could go back in time to diagnosis day and have a conversation with myself, there are definitely a few things I would want to let myself know. First being…..
Your world is about to change but you will survive! With that said, there is no perfect advice that will make you feel 100% better about the diagnosis of your child BUT with time it will get easier and you will learn to cope and become stronger. A few other things that I would share with myself on “D-Day”…. There will always be bad days mixed in with the good and those bad days ARE allowed. Don’t you dare allow yourself to feel bad for experiencing days in which sadness takes over and defeat sets in. Allow yourself to cry and please talk to someone about how you’re feeling. Never be ashamed.
Do something that makes you happy. Make it a priority to set aside days or moments where you do something that you enjoyed pre diagnosis day, whether it be working out or a particular hobby, something that is only for you. Don’t forget how important it is to not lose sight of yourself and the fact that you too deserve to be happy and have every right to take a moment for yourself. It’s much too easy to get lost in the sadness of the diagnosis along with all of the appointments, medicines and therapies as well as maintaining a household.
There’s no perfect advice other than you’re not alone, and by no means is this an end to anything but rather, a new beginning and new outlook on life.” –Kelly
“When Kaleb was born, I knew I saw something in his eye, but as he was cleared for all of his assessments, I assumed it must have been something that would never go away. After 2 months of Doctor appointments and rejections that my mother’s intuitions were off, I FINALLY had the picture to prove there was something going on with my baby! From that day on, I knew, never give up when you KNOW!! From the day of diagnosis, I think the main thing I would tell myself is to NEVER GOOGLE any health conditions! And NEVER Google the surgeries!! You DON’T WANT TO SEE IT! Just have faith in knowing you’re doing the best thing for your baby, and KNOW they bounce back from any surgery within days!! Always ask questions! No question is a stupid question.. Join support groups that can relate to your situation and give great advice!! And ALWAYS patch!! Don’t give up during the tough times! You can do this! And it is rewarding in the end! It’s ok to be nervous on the day of surgery! It’s normal to be nervous! I am still nervous, and we are on surgery number 8 coming soon, but don’t talk yourself out of it. FIGHT FOR SIGHT ” –
“Jed was diagnosed with a congenital cataract in his right eye when he was four days old, and had surgery to remove the cataract when he was ten days old. With the diagnosis, our run of the mill concerns as new parents were compounded by unexpected and confusing fears that our son would never see in his right eye or face a lifetime of terrible complications. We also felt incredibly isolated, as until Jed’s diagnosis we had never even heard of congenital cataracts, and we didn’t know any other family who had experienced them. We wish that we could have known then that three years later our son would be a playground daredevil and able to identify rocks by sight, while his eye patch, contact lens, and bifocals would have become everyday aspects of our lives. In those early days we also would have been comforted to know of the support that we now receive from the many other families with aphakic children that we have met through Facebook support groups and Eye Power Kids Wear.”
So many people have been through a lot harder things than we have. No matter the struggle, IT’S GONNA BE OKAY! If you could go back in time, what would you tell yourself? What would you say?
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