“I am not afraid of tomorrow, for I have seen yesterday and I love today.” ~ William Allen White
Like everyday, today is a new day and how I approach is up to me. As I mentioned in my post yesterday, E had a very important neurology appointment last week, the results of which are still less than concrete, but more focused and ultimately bittersweet. With everything going on in the last week it’s been something I have wanting to write about but have not really had the time or really the grounding to really process how I am feeling. Even as I type this, I am not sure how I feel. Perhaps this inability to process clearly comes from a form of denial or maybe just that it’s not completely concrete or maybe it’s just that I am running so fast that it hasn’t really set in. Considering I had a breakfast meeting this morning with 2 friends/business colleagues whom I have known for a long time and once we had finished our meal at the very lovely London Hotel and I made my way to the office, I realized my shirt was on inside out…then yes, perhaps it is the final element or some combination of all 3. Personally, the shirt inside out made me laugh out loud as it is so purely ridiculous and no matter how graceful I attempt to be, I will never be that person…oh well…we can pause a moment here to allow me to truly embrace this piece of news. Again, all about the lens and I will just refocus this part of my lens to qualify this characteristic about me as charming and not so much clumsy which might be more accurate.
Ok, so now on to E’s diagnosis or rather the thoughts about her condition. As I have said before, without doing an MRI on her brain, which the neurologist will want to do at some point but with E’s respiratory issues she is at greater risk of complications going under anesthesia and that is most definitely something we need to wait on for a whole host of reasons. So without these images of her brain and based on her medical records and observation, this specialist who is very well respected in his field, came to think that E may in fact have Cerebral Palsy (damage to the brain) that does and will affect her coordination. The good news about this is that eventually she will likely be able to do everything that requires coordination, like walking, talking, writing, typing, etc. but it will take her 3 or 4 years and the process to get there will be intense and once she does get there, she will likely continue to be challenged with disabilities, but again, will eventually likely be able to conquer most of them. The other piece of good news is that she is progressing, getting better and improving with therapy. Overall he looked at her and said, “considering everything she has been through, she is doing well” and of that he could not be more accurate, for she is here. So while we sat there elated in some ways to at least have a direction and that it was his belief that she would in fact do the things that we so want her to be able to do, the notion that her road will continue to be challenging and difficult saddened and still does sadden me. She is my most precious baby girl and to think that people may look at her funny or that she will ever feel self-conscious or frustrated about her abilities for things over which she has no control hurts my heart. Of course, in some ways we all experience this. People’s reactions to what affects our lives are not always forgiving or understanding if they have not experienced similar circumstances. Divorce, IVF, etc for me personally were challenging times in that people always seemed to have opinions about my circumstances and how these things affected them, but I am an adult and she is little, small, growing, but strong. Ever so strong. She has more fight in that little body than I have in all of mine. So she will fight, and we will fight along side of her to do whatever she needs. This will be a long road but one of hope and joy for again she is here. The other night as I was recounting this conversation to my mom and dad, they were both relieved and happy to hear the news. As I started down the road of how I was a bit saddened, my mom was so helpful in just reminding me how far she has come and my dad told me the story of a person that was part of my childhood but I don’t remember well. As it turns out, her little girl who is only 8 years old has been battling cancer for the past 18 months. She has fought it off a few different times but it keeps coming back. Most recently it has come back in multiple places in her little body and there is virtually no chance that she will make it beyond the next 6 weeks. As I told them our news about E, it was fascinating the lens through which they each received the information. For my mom it was a relief although she supported me as well in my concern for E’s future and my dad, while he had the similar reaction, was almost celebratory for the relative scenarios of little Faith (the little girl’s name), he could not have been more pleased that E is alive and has a chance. As I listened to the story he told, my heart broke for this family. The tragedy that they have fought so hard to avoid is simply unthinkable and my prayers and I hope yours will go out to this little girl and her family.
Even now as I recount the story, and I reflect on our situation I am still unsure of how things will progress with E, mostly because not too much will change, but what I do know is that there are 3 truly awesome circumstances that played out (outside of my public humiliation of wearing my shirt inside out AND I just realized one of my buttons is open…I mean honestly!) today:
1. I too was reminded to refocus my lens. To be grateful of each little gift and for each moment and that the joy of having E far outweighs the concern over what might be.
2. I have awesome family and friends who will always help remind me that things will get better, but also let me process how I need to, for you cannot know exactly what someone is going through as we are all different but simply acknowledging their emotions goes a long way to help them feel less alone.
3. To know that there are amazing little girls and her family out there like little Faith and her family who fight every day for their children and children like theirs as they become advocates on so many levels for themselves and those around them. These families remind us how very lucky we should consider ourselves each day.
And with that, I will simply take a deep breath, which I hope you will join me, refocus your lens and restate the quote from above as it could not be more perfect “I am not afraid of tomorrow, for I have seen yesterday and I love today.” And I wish you all a lot of love for today. For yourself, your loved ones, and the fact you are here and then for whatever you have left over, send it out as prayers, energy, vibes or whatever you are into, into the universe for heroes like Faith and her family who can use the positive love and energy to wrap around them like a big warm hug and make today and yours anewfavoriteday.
5 thoughts on “It’s all about the lens and how you focus it. How do you focus?”
Wow, this is a powerful post! We all need to constantly check on our focuses, once in a while to see whether we can see through the lenses!
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Thanks for commenting! Love this…so true sometimes the lens can get a little foggy!
Very powerful post and lays your heart on the table. Your a wonderful mother and for an unknown reason E was gifted to you because you can handle this.
On a side note I have a good friend in NY we had our oldest a month apart. Her son has CP and id love to connect you with her. I can tell you more about him and my nephew as well 😉 sending love
Wow Shannon, I think this is your most beautiful and (as others have said) powerful post yet. Your deep love for E and Q shines through in your writing – it’s an honor just to witness it. Thank you for your continuing inspiration.
Thanks so much Laurie. It means a lot to me that you continue to read and go on this journey with us. As you so well know, this emotion they call a Mother’s Love is so pure and powerful it can propel you to do anything. Thanks for your support and sharing your thoughts.