Thursday, August 2, 2012

Flashbacks to Flashforward

Life has been on my mind lately, and I am the type of person that can best transfer my thoughts into written word. So alas--here is another (hopefully) therapeutic and cathardic blog post. I figured I should make a point that I often try to be as open and transparent about my feelings as possible. I have two reasons why I feel the need to be so raw, for one, I feel as though it can help someone who may be going through what I am and not feel alone, and the other is so that I can look back on these posts to see how far I have come from where I am today.

The other day I had an appointment at Pres Hospital...the first time I had been there since Micah's Neurology appointment, and the very first time I had been in that specific office since my post partum appointment after the boys were born nearly two years ago (wow). It's absolutely impossible to erase those memories. Everything down to the smell of the elevator or the humming of the parking garage creeps into your brain and opens the drawers of a painful (and still recent) past. I'm pretty sure my skin started cracking just remembering the scent of antibacterial soap, scrubbing and hand santizer. The beeping of monitors in the NICU. The anticipation and anxiety of walking in and the emptiness and uncertaintity of leaving---everyday, day in and day out.

I look at where we are today. Where I am today. Where Micah is today. All of the things we have endured and overcome as a family and all the things we continue to endure, and all of the things we have yet to come.

First, I'll look at me. Bobbling in and out of depression like a booey in a wavy ocean...everytime I feel like I shake it off and back to my normal self I start getting lethargic, quiet, reclusive, fatigued, lackluster, impartial and unenthused. I took on the rescue effort last spring and that has been my saving grace. It gives me something to focus my mind on and give me a since of purpose in an area where I have passion. I did not anticipate however the obstacles and hurdles of dealings with human counterparts, of all things, in the dog rescue world. That part by far has been the most stressful, second (or maybe still first) only to doggie illnesses. But the rewards far outreach the stressors, and I love what we are able to do. I love that my passion is my purpose. I refuse to quit because things get tough and I refuse to let what people say or do stop me from my goal.  Of course, there needs to be a balance and I am learning how to better manage my time with family and my time running a baby rescue. 

The only problem I find is that no matter how engulfed in rescue my thought life becomes it still never takes away the pain, frustration, and sorrow that still plagues my heart. It is IMPOSSIBLE to not think of Jeremiah every day---and I never want to stop it. Which this leads me to Micah. My boy is such a joy. His personality is apparent, and he is intense in every way. He is either intensely happy or intensely mad and trust me on this, you will know when he is either. I look at him and my mind runs through so many thoughts and emotions. First I see how adorable he is. How proud he is to do what he can do. My heart swells with pride to see him reach his milestones, and slow and gradual as they can be. His days are littered with therapy and exercises, stretching and constant challenge. I try so hard to be his best ally, to make the best choices for HIM and to help him while still allowing him to have the most normal experiences as possible--where he is both pushed to improve and also allowed to just be and explore the world without always have to work for everything. In many instances, that means I literally sacrifice my back and my body to help him feel like he is part of the action. He does afterall have to keep up with his manian three-year-old gymnast-football-wrestling-monkey-spaz of a brother. I try so hard to make him feel like he is "in" it as much as Isaac is.

As a mother though, to truly observe what my son has to go through to just get around breaks my heart into a million pieces. I watched him the other day, "walking" in the backyard in his therapy walker. He was so ecstatic when I pushed him out into the middle of the unlandscaped yard so he could explore--but as his wheels got caught on rocks or turned into holes his exploration was jolty, rugged and short lived as he struggles to push his walker onward and navigate the terrain. How my soul aches that my beautiful son has to work so tirelessly to accomplish what most children can do at 1 yr of age with ease. Micah should be running and tripping, scraping his knees and rolling in the sand. But he can't do those things, not yet. His physical progress has been slow albeit steady in the direction of independence. How I took these things for granted when Isaac was a toddler---as if these milestones were a given--a right. The right to sit up on your own, crawl, pull up to stand, stand on your own, walk and toddel on your own--then run, explore, reach up high, hang on things, scoot around, climb up the name it...he can hardly do it if at all, and if he can it is not without immense effort on his part and often with the assistance of myself or his dad.  Micah can walk well with the support of his walker that holds him up right so he doesn't have to worry about balance...and his latest breakthrough is army crawling around the house which has given him outstanding freedom. For that I credit his Cranial Sacral therapy---because of that therapy he is also starting to say more words!

I know that this is the life he is going to have. One day he will walk on his own, maybe with braces, maybe without. One day he will. And one day he will sit, and climb into his own chair. Those days are distant still, as he just recently started with a new walker where he has no trunk support and has to depend solely on holding on to the handles (something he does not care to do). But this is the next step to indepence and walking on his own. I pray he continues to progress in this department. It's about as equally hard as it is a blessing to watch him work at it getting around. I know he will get there one day and fortunately you can see through his smile that he wants to. He is as bright as the brightest of them--and boy does that kid LOVE music. He is my future musician---that I am sure. And I will say this, for a 10 week preemie that kid has some SERIOUS lungs. He knows what he wants when he wants it and if it doesn't happen there is ZERO reasoning with him he will let you know. Strong will I guess---he always was a fighter from the very start of his 2.5lb life. I guess I should of seen this coming. Doesn't mean that at the end of the day between a chattery and challenging three year old (maniac child--I swear Isaac has more energy in one day than I think I've had in my entire life), and a very particular, motivated little 20 month old who is frustrated in his own body, therapies, husbands with maxed out patience, lots and lots of dogs, and various other people demanding my time---that I don't just want to go rip my hair out, get a massage, cry, binge eat a cake, or totally zone out like a comatose zombie. Oh to have one day where NO ONE needed me....but that day would probably be boring as hell. lol.

I'm not really sure what to say....I guess I'm still grieving, and maybe I always will grieve our loss. I still grieve in part for my loss as a mother...but more than anything, and from the very first day our world changes my heart grieved most for Micah's. It's Micah's identical twin brother who is gone. The one he was supposed to have an amazing bond with for the rest of his life. The one who understands his feelings and thoughts without having to say a word. The one who is supposed to be with him and share their lives together. Micah can't tell me that he misses him, but I know that he does. It KILLS me that I can't fix that for him. When I see him struggle it's the worst. He doesn't deserve this life. He doesn't deserve a life of struggle and hardship and undoubtedly mean spirited children and adults who will judge him for his challenges instead of taking the time to see his amazing spirit. He doesn't deserve to not have his brother. It's not fair. And this is the part I have the hardest time letting go. Just like any parent would do anything and everything for their child---it is so hard to watch my little boy have so many challenges in life---and not just the physical ones but the emotional ones as well. I know he is strong and full of joy--and such a sensitive heart. He will rise above and grow up to be an amazing man, I just know it. But it doesn't mean I don't feel for my baby.

And then there's this ongoing problem. The hardest thing about losing a child is that you never really know when to talk about it or not. When someone asks you how many kids you have, do you tell them the truth? Is it worth being a "debbie downer"? Every time I say "two" I feel like I'm nullifying his very existence. Everytime I say three or that "I had twins but.." I cant help but feel guilty for the person that probably didnt necessarily need to know. And do I really want to tell any bit of that story? And do you really want to hear what people try to say in response to make you feel better? Half of the time they try to minimize like it will make you feel better...and all you can say is "yeah....". When people ask whats on my arm I tell them it's Hebrew for Jeremiah, my son, and usually leave it at that. I wonder if they see my deep sigh and shift in energy when I do. Oh well...I guess I am meandoring here....just getting it off my chest.'s hard to move on. There are constant reminders every day and as seasons round the bend to my favorite season (fall)--with it comes the memories of my life nearly 2 years ago. I'll never forget it, obviously.

thanks for reading my ramblings.... :)