Grief-stricken
It has been a whirlwind few days since we learned of Adam's eye issues on Wednesday afternoon of this week. I feel as if I've been rapidly passing through the first few stages of grief. On Wednesday evening, I was in denial. I kept hoping that we'd wake up in the morning to find that the little bit we knew at that point was just a dream. On Wednesday afternoon, all we knew was that Adam had a cataract in his right eye and that there might be some underlying cause for it. On Thursday, I wracked my brain for possible ways my shortcomings as a mother had possibly caused Adam's eyes to BOTH have developed cataracts. Did I do something wrong while I was pregnant? Did I not watch him closely enough and he got into something that induced the cataracts? Or did he sustain some physical trauma to his eyes that I'd never noticed? Friday, I just felt overwhelming sadness and fear. I ended up connecting with a mother whose infant daughter had been diagnosed at the age of 12 days with a cataract in one eye. I listened to her story and was grateful that she'd seen the same doctor we are going to see and had nothing but wonderful things to say about him but hearing all the nitty-gritty details of her daughter's three surgeries and the aftermath they're still dealing with, nearly 3 years after the fact, was depressing for me. Today, I've been ticked. I've been ticked at myself for not getting to the accepting stage that Stu seems to have already reached (thank goodness for him or our family would probably really be in a tailspin). For a second, I was ticked at Adam for having screwed up eyes. I was ticked at myself for insisting that we have a third child who now has to suffer.
A couple things happened today that have made me feel slightly better:
1. I'd been invited to a friend's baby shower before this crap hit the fan and attended the shower this morning. It was very good to spend time with friends and (try) to think about something other than Adam's eyes/vision for a couple hours.
2. Stu cracked a joke about Adam and it was so shocking, I laughed and it sort of altered my mindset a little bit. Stu took Max to a very early hockey practice this morning and he texted me asking how things were going on the homefront. I responded that everything was fine but that Adam had spilled his milk three times during breakfast. He responded, "Maybe you should consider putting his cup on his left side so he can see it". I think it's important for our psyches to be able to find some humor in whatever situation you find yourself in. Good thing my husband hasn't lost sight of this.
3. I received two pieces of mail today that I found very uplifting. First, a cc: of a letter that Dr. Q. had written to the specialist we are scheduled to see on Wednesday. Dr. Q. had written to Dr. B. to tell him all the details of what she noted during Adam's eye exam on Thursday morning. The letter was quite personal and mentioned that Adam had been an amazingly cooperative 2 year old and had allowed her to get several ultrasounds of his eyes so that she could confirm there were no underlying retinal/other eye issues that would be the cause of his cataracts. She ended the letter by saying that we were a "delightful family" and that she would be interested to hear what Dr. B. finds out and decides about for Adam. The second piece of mail was a huge folder from the U of M with all the information we will need for Adam's appointment on Wednesday. It included maps and instructions and information about what to expect. I found that I have been right on the ball by requesting all of Adam's medical records and surgical notes from the two tear duct probes he's had in the last year. Additionally, I read that Adam would be seen by several people before we'd even see Dr. B. on Wednesday and that I should expect to be there anywhere from 2 - 4.5 hours. I am so happy that our situation is being taken so seriously and I feel assured that all my questions (that can be answered) will be answered on Wednesday.
Even though I am feeling a little better, I cannot stop panicking and projecting ahead about Adam's future state. I might be imagining it because I am so stressed but now I am worrying that it appears Adam's right eye is developing what is called amblyopia or "lazy eye" which occurs when the brain does not fully acknowledge the images seen by that eye (in Adam's case, because there ARE no images or hardly any images) and I worry that if that is happening, there is the potential that Adam's brain will start ignoring the images from that eye altogether. And from what I understand so far, if this occurs, it is irreversible. And then my thoughts just snowball and I start wondering why (as far as we can tell) this is all occurring so quickly. Because Stu and I swear he did not have cataracts two months ago and now he suddenly has no vision in his right eye and on and on and on. I keep chanting in my mind, "Wednesday can't come fast enough. Wednesday can't come fast enough." And I know I just need to keep praying for patience and peace and for God to allow me to place all of this in His hands (or to come to grips with the fact that it all always has been in His hands and there's not much, other than doing my best to be the best earthly mommy I can be, I can do about it).
A couple things happened today that have made me feel slightly better:
1. I'd been invited to a friend's baby shower before this crap hit the fan and attended the shower this morning. It was very good to spend time with friends and (try) to think about something other than Adam's eyes/vision for a couple hours.
2. Stu cracked a joke about Adam and it was so shocking, I laughed and it sort of altered my mindset a little bit. Stu took Max to a very early hockey practice this morning and he texted me asking how things were going on the homefront. I responded that everything was fine but that Adam had spilled his milk three times during breakfast. He responded, "Maybe you should consider putting his cup on his left side so he can see it". I think it's important for our psyches to be able to find some humor in whatever situation you find yourself in. Good thing my husband hasn't lost sight of this.
3. I received two pieces of mail today that I found very uplifting. First, a cc: of a letter that Dr. Q. had written to the specialist we are scheduled to see on Wednesday. Dr. Q. had written to Dr. B. to tell him all the details of what she noted during Adam's eye exam on Thursday morning. The letter was quite personal and mentioned that Adam had been an amazingly cooperative 2 year old and had allowed her to get several ultrasounds of his eyes so that she could confirm there were no underlying retinal/other eye issues that would be the cause of his cataracts. She ended the letter by saying that we were a "delightful family" and that she would be interested to hear what Dr. B. finds out and decides about for Adam. The second piece of mail was a huge folder from the U of M with all the information we will need for Adam's appointment on Wednesday. It included maps and instructions and information about what to expect. I found that I have been right on the ball by requesting all of Adam's medical records and surgical notes from the two tear duct probes he's had in the last year. Additionally, I read that Adam would be seen by several people before we'd even see Dr. B. on Wednesday and that I should expect to be there anywhere from 2 - 4.5 hours. I am so happy that our situation is being taken so seriously and I feel assured that all my questions (that can be answered) will be answered on Wednesday.
Even though I am feeling a little better, I cannot stop panicking and projecting ahead about Adam's future state. I might be imagining it because I am so stressed but now I am worrying that it appears Adam's right eye is developing what is called amblyopia or "lazy eye" which occurs when the brain does not fully acknowledge the images seen by that eye (in Adam's case, because there ARE no images or hardly any images) and I worry that if that is happening, there is the potential that Adam's brain will start ignoring the images from that eye altogether. And from what I understand so far, if this occurs, it is irreversible. And then my thoughts just snowball and I start wondering why (as far as we can tell) this is all occurring so quickly. Because Stu and I swear he did not have cataracts two months ago and now he suddenly has no vision in his right eye and on and on and on. I keep chanting in my mind, "Wednesday can't come fast enough. Wednesday can't come fast enough." And I know I just need to keep praying for patience and peace and for God to allow me to place all of this in His hands (or to come to grips with the fact that it all always has been in His hands and there's not much, other than doing my best to be the best earthly mommy I can be, I can do about it).
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