Leslie asked me to share some of her thoughts, as she has prepared for this journey. This is a battle full of mixed emotions -- ups and downs...
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Leslie:
It's late at night, I'm tired, and really don't want to go. But I really want to share some of the thoughts I've had lately.
The thought of removing an eye is heartbreaking as a mother, but that's just the "thought" of it. The actual stuff we deal with is probably different than most realize. Once the eye is enucleated, the prosthetic eye requires a lot of maintenance. For example, there is consistent goop and cleaning and readjusting. Cosmetically, although prosthetics have come a long way, the eye will never look the same as a real eye.
In addition, you live your life in fear. The "What ifs" set in, and you are plagued with thoughts of worst case scenarios.
'What if tumors start to grow in the only good eye left?'
'What if he injures his only seeing eye?'
That is the worry I feel about his eyesight, not to mention the constant anxiety of,
'What if his cancer spreads'? Or,
'What if he develops a new type of cancer?' (as they are more likely to do).
The doubt of wondering,
'What if we are making the wrong decision?' or
'What if the Dr's accidentally remove the wrong eye?'
Those ugly nightmares are all too real for me.
I know bad news can happen any time; we experienced that fear with Mason, and it was absolutely awful. Thinking these thoughts can consume you, and drain your happiness. The "what ifs" are not a healthy tenant in ones mind. So, I only let myself dwell on them for a very brief time. I'm not trying to create a pity party, I just wanted to share them, so others might better understand how real and hard this can be.
About a week ago, I couldn't fall asleep as I was worried sick about Luke's upcoming enucleation. I kept thinking, "Are we making the right decision?" I know we are, I've had that reassurance more than once, but that dang doubt and 'what if' mentality can really make you question yourself. I've had a few months to doubt our decision this time, time to play that game.
In one of my evenings filled with doubt, I decided to look up the word "eye" in the scriptures. I came across some beautiful verses that were very powerful to me. While I know these scriptures don't literally mean one single eye, I am going to interpret them that way for my sake as it gives me a lot of comfort and hope...
Mathew 6:22 --------------------------------------------------------
I know Leslie would certainly appreciate the prayers of comfort and hope as they make this trek. So many of you have said prayers on the Low's behalf. They can feel them. Thank you for your compassion and love and support.
Good luck Leslie and family. My son has bilateral RB, and had his left eye enucleated, then received chemo to eradicate the four tumors in his right eye. I was a mess, but he has done so much better than anyone predicted. He has scar tissue where the tumors were, but he is seeing well and doing everything that all 3-year-olds do. Your boys have one healthy eye, and they are so little that their brains will adapt accordingly. I have no doubt that your little men will be just fine! Good luck, mama!
ReplyDeleteLove you Les! Thanks for sharing your thoughts, they are inspiring. We are praying for you guys and love you all. ;)
ReplyDeleteThanks for sharing your thoughts Leslie! We love you and are praying for you!!
ReplyDeleteLess, Thank you for sharing your tender thoughts during this heart-wrenching time. We love you and are continually inspired by your strength and ability to find the light amongst the darkness. Sending our prayers to you for increased strength and peace during this tumultuous time. We love you and your family. Hugs and prayers always.
ReplyDeleteThanks for sharing your thoughts, I cried when I read your ugly nightmares. I have been reading much about the refiners fire of late, sometimes we do not understand all of Heavenly Father's plan for us. He trusts you and Richard to do the right thing for these little ones. We cannot walk where you walk, but we can be your cheering section. We love you, we love those children of yours. Our thoughts, our love and our prayers are with you.
ReplyDeleteLove you, Les!!! I'll be saying extra prayers for all of you this week.
ReplyDeleteHi Leslie...I just recently saw a video that was shared through Facebook about a woman from BC who was born with Retinoblastoma. The video was very inspiring and encouraging as she is an amazing mother of two. Thought it might encourage you both and give you hope for your sons future. Here's the link: http://vimeo.com/113341471
ReplyDeleteThanks for sharing Melanie. What an amazing person!
DeleteOur prayers continue to be with you.
ReplyDeleteYou are an inspiration. Thank you for sharing your journey. Those darling children bring light to all of us.
Love, Susan & Mark