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| Conner (CP3) |
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| Keith |
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| Camden (snacks) |
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| Cohen Grace (Coco) |
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| Me and Hubs |
So now you've met everyone, except for our crazy dog, Weagle. My daughter Cohen is my true drive for writing this blog. She was born on Nov. 1 and we were told she was perfectly healthy. She weighed 6 pounds and was an angel from the second she entered the world. At her two week check up the pediatrician checked her eyes and said "I don't see any red light reflex in her left eye." Now, I am a mom of 4 children so I was not immediately worried, until I saw her face. I will never forget feeling time stand still when she said the next words to me. "It is completely obstructed, so it could be a cataract, or a tumor, retnoidblastoma." I'm pretty sure I did not hear anything else she said. All I could think, was how can this be happening? We were blessed with this baby we were not expecting, IT WAS A GIRL, after 3 boys, and she was so happy and amazingly good! We went immediately to the eye foundation for a consult and to verify what giant we were about to face. I remember sitting there crying and crying and crying. I could not pull myself together. After 3 hours, I was reminded of 2 Cor. 5:7, "we walk by faith, not by sight." I had no idea what news I was about to hear, but no matter the outcome, I would walk by faith and not by sight with my daughter.
We were taken into an exam room and Cohen's eye was completely violated. The only words I remember hearing in that moment were, "It is NOT a tumor." The rest, seemed like a cake walk from there. Now, seemed is the opportune word there! The procedure for her cataract was already laid out before us, with little options or variation on our part. We had a window of opportunity of 2 weeks (bt 6 and 8 weeks old) to remove her cataract covered lens and begin putting in a contact as well as patch therapy. This was all fine and good, until the day came. I'll be honest, I'm really tough. I can withstand a good deal of emotion, pain, heartache, blood, guts, etc....I'm a mom of 3 boys. This was unbearable! We showed up at 5 am on the day of her surgery. When they removed my 6 week old angel of a daughter from my arms, I wanted to melt into the floor. She was going into surgery, having a tube down her throat, put under anesthesia, having her eye cut open. It was more than I could stand that day. They brought my daughter back from surgery and she looked like this......
All I could do was hold her and cry and rub her face. I could do nothing to ease her pain and was having to work around the tubes that were attached to her. I knew in that moment looking at my daughter who had been through so much at such a young age, there is so much beauty in our brokenness. She had NEVER looked more beautiful to me than she did in that moment! In the days to follow I was putting 15-20 drops in her eye each day, worrying myself sick if I got enough drops, but not too much in her eye, and the tape.....UGH, the tape! Everyone kept asking me what the next steps were, what was going to happen, was she going to be able to use her eye, normal questions. To me, it was all just noise! I had no answers. Her doctors have no answers. All I was told, was "we have to have faith that this will work." I am a very strong believer of prayer. I am a Christian that believes with all my heart that all things work out for the good of those who love the Lord. But I was struggling with this. I had no answers and my daughter looked like this, blind and could not see. I kept getting so angry when I was told we were going to have to "try" having a contact made for her eye. I was having to put a contact in and out of a newborn eye MULTIPLE TIMES PER DAY! I was frustrated, mad, upset, sad for my daughter, and worried about her future.
It took one night at our fabulous church (church of the highlands, check out the website and live feeds ;) from our amazing Godly pastor to say this small phrase "Grace transforms us." At that moment, there was no one else in the room but me and the holy spirit. God was speaking, and I could hear it....like a megaphone! Cohen Grace was going to transform my life. It wasn't her that was broken. It was me. She wasn't the one that needed changing. It was me. He was transforming me, and all of us in our home, through this small tiny miracle, Cohen Grace. In order to be her mother and teach her to see (physically and spiritually) I needed to have a 'blind faith' that God was going to use this to His Glory and for His purpose.
I left church that night and have seen my daughter and this situation in a brand new light. This isn't a hindrance, or a burden. This is a blessing, and it will be the story that makes this sweet girl the woman she grows up to be. So far we have been using a contact, patching 6 + hrs a day, and learning to laugh and roll with what life gives us. Everyone always asks me, "If I think she can see now?" I don't know if she can. Dr.'s don't know if she can. What I know is "strength doesn't come from what you CAN do. It comes from overcoming what you COULD NOT do." I learn from my children everyday. I learn new lingo, new cool ways to dress, new cool tricks and songs. From Coco, and her 3 months, I have learned that saying you have faith is easy when you have the answers to the questions. But real faith, blind faith, is having peace when you don't have any answers!
Any moms out there that have experience with this, please give me advice and what worked and did not work for you. This is where we are now, rocking cool cute patches, and trying to establish a network to help teach her to use her 'new eye.'
Welcome to the world of imoms! This is not a sprint, but a marathon and unfortunately, it is not one you volunteered for. But here you are, on the journey, so enjoy the sights along the way. I don't have advice but maybe a few word of wisdom I have gathered along this road (and many of these came from other imoms I've met through the blogging world). 1. It will get easier! Julia is now over two years old and I vividly remember those first few months of the contact, patching, and drops. I remember crying multiple times a day as the contact would fall out and saying, "I can't do this for years." But we did. We adapted, we figured it out, and we changed. 2. Patching sucks. No way to avoid it and don't let anyone tell you any differently. And it may get worse before it gets better. Julia learned how to rip off the patches at around 9 months. We did socks on her hands, elbow restraints and now we do reward charts. Whatever works for you. And it has smoothed out - she will leave it on now, but it wasn't like that for many, many months. So don't be surprised when your little bundle starts reaching up and ripping off her patch and then grinning at you like a cheshire cat. (Of course, you could be one of the lucky imoms whose kiddos never mess with the patches. I've heard those exist). 3. Most people don't get it. They try to be supportive, and most are. But no one really understands unless they've been there. I got to the point where if I heard, "at least she has one good eye," one more time, I was going to deck someone. Because it wasn't about her having one good eye, it was the difficulty of the moment. The juggling of drops, patches, appointments and surgeries. So hang in there. Find some good friends you can vent to. Listen to all the advice, throw out what doesn't apply or work for you, and move on with your life. And don't forget to just enjoy this time. She is still just a little baby, not just a baby with a cataract, patch and contact lens. She will be okay - you will be okay - in a few years you will be giving another mom advice! Feel free to email me at Kittynoah@hotmail.com. I know you find my blog, you might look through it. There were a couple posts where I felt like giving up. You may have those moments too! Hang in there!
ReplyDeleteThis was so encouraging to read! I have looked at your blog so many times already. I've had my mom look at it, all of my physical support group! It is a bit scary, but so helpful to see others who have already gone so far ahead of us with treatment and options. Your transparency as a mom is so refreshing. Thank you for giving me your info and welcoming me into the group of 'imoms.' I am looking forward to sharing in this journey with your sweet family.
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