My mother... and Hope.

A few weeks ago as this journey of ours began, I had a single thought going through my head, "I want my mommy." I wanted to call my mother, hop onto her lap and have her snuggle me close. It just seemed that things were happening, as they do in life, and this was one of those times when I was hoping my mom would give me strength, kiss my forehead and make it all better. But then I realized something, I'm the mother now. Although in my late 30's, I completely felt that I was a child, not ready to deal with the decisions and consequences that were about to unfold. For the first time, I realized that this was my responsibility. I couldn't run to my mom and have her make it all better. It was my turn to be strong for my daughter, my turn to kiss her tears away and my turn to carry the weight of those choices and consequences on my shoulders. For the first time, even though my daughters are now 6 years-old, I understood so much more of what my mother has sacrificed and given to me throughout my life. She has carried the burden, she has sheltered me and been strong when I'm sure there were so many moments where she would have preferred to huddle in a corner and cry. My mom lived through having her newborn daughter born with a club foot and watched her wheeled away at 3 days-old for just her first surgery. She lived through the torment of knowing that there wasn't a damn thing she could do about it except be strong and have hope. That was just the beginning of the journey for my mom. At this moment I can't remember one time when I needed her that she wasn't strong, loving and well- there for me. I think back now and wonder how many moments there were that I didn't see where she weeped for me, was scared for me or felt that the weight was too much to bear.


I love my mother, Beverly- my mommy. I have no doubt that it is because of her and my dad that I am sitting here typing and sharing rather than curled up in my bed weeping at this exact moment. My eyes are full of tears and I am ready to scream at the world, shut down and run away. This is a tough moment and what I am sure is just one of what has come before and one of the many that will continue to come in the future. And although I'm crying and still want my mom, I am getting through this because of who she is and what she has taught me. She has been the best example of a mom that a woman could ask for. She is smart, strong and most importantly, she has always been there. I want to be her when I grow up. :)


“Learn from yesterday, live for today, hope for tomorrow.”


Here's my quote for the day. Right now I very much dislike the idea of hope but know that without it, a full life is not possible. After Lena's surgery, I was ready to accept that she was no longer going to be able to use her left eye. The 3rd cranial nerve was severed and there was undeniably no chance of it being fixed, reattached, etc. The neurosurgeon made that very clear to us. So although she has vision in that eye, she cannot open her eyelid and now has lost most movement of her eye. Then... we started to hope. Just maybe she could have plastic surgery to partially open the eyelid. Just maybe she could learn to use her eyebrow to open the eye. Just maybe she had enough muscles left so that her left eye could somewhat follow her other eye. Just maybe she would have partial ability to use this eye if we found the right doctors and made the right decisions for Lena that would affect how she lived the rest of her life. Again, I had accepted that this eye would remain closed and was so grateful that the tumor didn't cause worse problems than this. I was thankful that my daughter was with me and that I could hold her, love her and tuck her into bed each night. But then there was hope.


We've had two doctor appointments in the last two days. One with our original neuro-opthalmologist (sp?), Dr. Edmonds from Texas Children's Hospital and then one this morning with Dr. Yen from Baylor College of Medicine Eye Clinic. It's frustrating when doctors advice and suggestions don't match but I think the bottom line is this... Lena is not a candidate to have her eyelid opened up. Also, Lena does not have enough mobility in that eye at the moment to be able to see even if we did. She would have extreme double vision. We can't open up her lid and leave it exposed. If we did the surgery, that eye would pretty much remain open and be completely unprotected. Think about how many times you blink when you think you're about to be poked in the eye, when an eyelash falls near or sand blows in it. She wouldn't have that ability. So, for the hope that has been built up in the last few weeks, it is now greatly weaned. It has been a hard day. There's no other way to say it. I love her so much and want so much to make this better. We are not without hope because we still have some options to look into but it's a struggle. Apparently we only have 3-5 weeks to do something before she begins to lose her vision in that eye. Her brain is going to start shutting it down. So I think tonight I'll just cry and crawl into my bed after the girls go to sleep and then tomorrow, we will all wake up with renewed energy and hope.


When I told Lena last night that we were again going to see a doctor and he was someone we haven't met before, she asked me if he was going to open her eye. I told her that he wouldn't be doing anything but looking at her eye today and talking to us about some ideas he might have for getting it to open a little bit. I'm not sure how much of the conversation she understood as we were in the doctor's office but the main thing I'm hoping tonight is that she doesn't ask me anything. I feel horrible that I can't directly face this with her but she is 6. I might have moments where I lose sight of my hope but I'm not willing to let her give up hers. As I said before, I won't lie to her and we've been honest with what all is happening but I'm still not ready to tell her that her eye will never be able to open. I'm not ready to take away her hope. I think that she needs it right now more than ever.


I know the updates are not as frequent but I will keep you posted when new news arrives or there's something that pulls at my heart strings. I'm back at work this week so we'll be busier than ever. For each of you that gives me a smile when I see you, thank you. It isn't easy to go into details about what all is happening when we stop to chat. It's hard enough to keep my composure as it is but I continue to feel that we are all wrapped in your kind words and thoughts.


Okay, I'm wiping away the tears. I'm going to go hug Kira, Lena and Naia and spend a few hours laughing and loving with them. Then it will be time to crawl into bed and let go.


Mom.... I love you more than you could possibly imagine. Thank you for always, always loving me, protecting me and giving me strength when I most needed it in life. I really do want to be like you when I grow up.