Tuesday, October 16, 2012

A Fresh Start

So much to update, so little time. Last week we experienced the annual International Balloon Fiesta for the third year in a row since we moved back to Albuquerque to years ago (we made it just in time to see it when we got here). What a fun adventure the balloon park is---so many colors and shapes, it's such a blast. The funnest part of the Balloon Fiesta is watching your children marvel in the experience, how simple and amazing life is at that age.

This may in fact have been our last Balloon FIESTA for many many years to come, since (I know some of you may still not know this) we received an assignment for England! We could not be more thrilled to be able to experience living overseas again. This is something I have prayed for my entire life (at least since I was twelve and fully grasped the fact that the world consisted of more than New Mexico, Colorado, the distant lands of California--ahem, Disneyland-- and Nebraska. I have always loved the idea of LIVING, not just visiting, in Europe so this is a true dream and prayer come true. What more could a History major want? Not to mention this new opportunity to live in and Old World gives the blessing of a fresh start.

Try as we might, this place is just haunted by shadows of grief, heavy memories, and what-should-have-beens. We moved into this house just before the twins were born, and our household goods arrived from Japan 4 days after we held our stillborn son in our arms. Needless to say, this past week I started going through boxes and closets that had been filled during those first days that I never got around to unpacking or sorting. Losing a child, having a preemie in the NICU and then at home just doesn't give you a whole lot of opportunity to have any energy to do those things----heck let's face it, I just didn't give rats rear-end about any of that.

So here we are....October. Two years have gone by and I'm approaching an anniversary of loss and a birthday. Two years later and I FINALLY feel like I have a soul again. Strange as it may sound to some, those that have experienced grief, loss and subsequent depression know what I am talking about. It's not willful either, it just is how you are---who you are. Soul-less, lackluster, foggy, in a daze....I didn't feel like I existed as a real person, I was just a shell of a human who did things but didn't know what was going on, had no sense of time, just did what I had to, and tried a little bit to look forward to things (like our cruise) to keep me going, but it still didn't really fix me. I was still broken.  Now I can say I am passed that phase, for about a month now. Suddenly I am able to comprehend the time of year, upcoming events, and get this---get excited about planning for holidays! Last year every holiday came and went like just another day---I didn't even listen to Christmas music and hung about 1/3 of our Christmas decorations. I was blindsided by every holiday, birthday, anniversary, you name it, I just was unaware or able to process anything. This year, year 2012, I have even decorated my front porch with pumpkins, hanging bats, a broom and some pumpkins! I still have two weeks until Halloween---and I don't even like Halloween! I'm so proud of me haha. You bet your butt I will be decorating for Christmas BEFORE Thanksgiving, something I have never done, but I need to make up for two lost Christmases and our last Christmas in our first home. For the first time in 2.5 yrs, I actually feel like this house is my home. Weird right? That's just what grief does to you. Grief hacks you off at your knees, crushes your heart, fogs your brain, and drains your spirit, oh and kicks you in the ribs a couple times and throws dirt in your face. You can't fight it, you can't stop it or fix it before its time...it has a mind of its own and the only thing you can do is prolong it by not allowing yourself to properly grieve. Given my situation I was NOT able to properly grieve---I still had the blessing of a new son, a surviving twin. So all the while I was supposed to be grieving the loss of a child I was carrying for and cooing over our (very premature) newborn blessing. Each sentiment/state of mind hindered by the other---polar opposites. So you can't blame me for living in a legless (funny but that's how it felt), broken-hearted, foggy, and soulless daze. In fact I think I grieved and was more deeply depressed the second year than the first---which was something I was warned about from those who had lost a twin.  Once your survivor is a year old life gets a little easier in that department so grief taps you on the shoulder and says, "My turn."

Well my friends, God answered our prayers for a breath of fresh air and England seems like the perfect answer. I can picture it now, God picked me up of the floor (where I am laying like a limp and lifeless dummy, lying in a puddle of my own drool) holds me up by my shirt, gave me two slaps (as if to say "WAKE UP CHILD!"), pours water on my face, shakes me a little and pats the dust off my shoulders and then points me on my new path. "Off you go now!" That's how I feel, by sending us to the UK He is giving us the wake up call and most of all HOPE for a better change.  Knowing we get to leave and start fresh gives me renewed joy and refreshes my soul and my heart. My brain is considerably less foggy and I think I've been given prosthetics for my legs (lol--).  Yes, there is a good chunk of me that is sad to leave my new friends, old friends and family. We will surely miss every single one and we fully expect to have visitors!

As far as the actual assignment goes, it's not 100% official until we get our orders which doesn't happen until a few months prior to our leaving (which we have a good time left here). The biggest hurdle will be having the doctors at our receiving base in the UK approve him coming there, based on their availability and ability to give him the support he needs. Fortunately he is very healthy, medically. He requires physical therapy most of all, but we have heard they have therapists there that he would need.  We are also in the process of trying to get Micah to have a surgical procedure called SDR which will help him with his muscle spasticity. The best place to get it down is in St Louis Missouri, and in order to get our insurance to approve him going there we have to run him through the local specialist channels first, hopefully we can get this done soon. So pray for the right people to be involved in Micah's care so he can get this procedure done in a timely manner, it will do so much for him!
Micah J


Right now Micah is busy with Physical therapy, Occupational therapy, occasional Cranial Sacral work and infant massage, and yesterday he started his first ride for hippotherapy! More on that in another post, but Micah is doing well and growing to be a big boy. He will be 2 yrs old in two short weeks and my mind can't comprehend that just yet. :)

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 stairs...you 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.

Basically...it'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.... :)

Tuesday, January 31, 2012

I did it.

Let's see, Micah is 15 months and 3 days old. That means that it has been 15 months and 3 days since we found out Jeremiah had gone to heaven to be with the Lord. 15 months is a long time, still I can't believe it's already been that long. In some ways it seems like it was just yesterday and in others it seems like it was forever ago...in an old dream---a very, very bad dream.

BUT--- today I did it--I thought about Jeremiah--specifically Jeremiah and Micah together, and how cute it would be with them together as twins, and I didn't feel total sadness.  I felt warmth and love. We were at the park and Isaac and Micah were swinging next to each other in the infant swings. Micah, as small as he is, fit perfectly in one half of the swing (with probably the most serious wedgy he's had to date).  I couldn't help it but it was fricken adorable. And like many times, if not every time I admire and swoon at his adorable cuteness, I thought of his identical twin brother---and how excrutiatingly cute they would be together.  Well, this was just another one of those moments I frequently have.  I thought to myself how stinkin adorable would it be if Jeremiah were here to be back to back with Micah in the swing. And then I said it out loud to Micah. "If your twin brother was here we could put him in the swing and it would make the cutest little double headed boy swing!"  And I talked to him about it a little. How cute he and his brother would be together. How they would have the same adorable soul-piercing blue eyes. Same cute-as-a-button noses. Same ridiculously infectious smiley faces. The same abounding joy. I sure wish we were able to experience that x2. All those twin things--that are unique to twins and unique especially to identical twins---because hey, it's not everyday that two people look exactly alike. (Too adorable people at that)

I did it though. I did it without feeling sad. I did it without feeling remorse, or pain. Sure, the hole in my heart probably began to glow (I guess like E.T?) but it didn't hurt as bad as it usually does. In fact, it was kind of nice to think about it. To acknowledge what could have been. What should of been. And I didn't shed a tear. I didn't even feel them well up. It just was what it is. My reality. My story. His story. OUR story. OUR life. And it's ok. It's not great or fantastic...if I got to go back and choose a different story I totally would pick the one with the fairytale ending (in Blu-ray). But no one has a perfect life. We all have our pain, our loss, our disappointment. This one is ours and I am learning that I need to embrace it.

Of course, just because I made it in that moment without crying doesn't mean I never will again. In fact I shed a few tears just writing about it. I guess the point is that I have finally gotten to the place where I can start to think of him and his brother together and be at peace. I miss my little man with all my heart.  It's like I told a friend, there comes a time in this process when you can think about your little angel and you smile instead of cry.

The truth is, Jeremiah was with Micah that day on the swing.  He's with him all the time.

Monday, January 9, 2012

Input Shminput

So it's been a while since I last posted any sort of blog entry. In the time that I have been MIA we have had our twin's 1st Birthday, some holidays, a few bouts of illness, a cruise & trip to Disney, more holidays, more illness, a New Year, and a due date anniversary. I am sure I could have written 50 blog posts or more on those things, and I am sure when I get the chance I will.

Tonight's blog post however has to do with most things Micah. And when I say Micah I mean Micah J, the twinless twin-preemie kiddo who probably has the anti-sleeping supervirus. There probably is a medical term, or combination thereof of what is really going on with him, but anti-sleeping super virus is completely appropriate.

Looking back, in Micah's short and yet so very long little life, he has never been a very good sleeper. He was, for a long time, one of those babies you had to continue to hold when they feel asleep in your arms, because of heaven forbit you set him down anywhere, he will wake up in a second. And then he has always been a light sleeper...and not to mention he has probably slept through the night maybe 5 times in his entire life. I am probably being generous. For the most part, his average night consists of at least two wakings if not one or two more (or even three...or four....).  Whoever refers to sleeping like a baby meaning you actually sleep hard, soundly, and long---obviously never had a real baby--or if they did it was the most aewsome-est sleeping baby ever. 

So long rambling story short, this kid throws MASSIVE tantrums when we try to put him to bed whether it be for the night or for a nap. He goes to sleep the easiest in the carseat in a moving vehicle, but outside of that he screams his cute little head off. SCREAMS. Not cries. Not whimper. SCREAM. He used to be able to nurse to sleep but now he is so worried about me putting him to bed he won't even let himself fall to sleep that way either. And trust me, anyone who thinks they have some good advice for the average not-so-good sleeper probably doesn't have any advice to offer that we havent already tried. We've tried aroma therapy, massage (which kind of helps), bath time, story time, lights on, lights off, music, white noise, quiet white noise, louder white noise, soft light, patting, side lying, tummy to sleep (with angelcare monitor), swaddle, no swaddle, footies, no footies, rocking (never works) singing, praying, talking, TV or Movies (works second best to the car ride), and yes...even the dreaded CIO---and various altered forms of such. He cries the same if you sit there in the room with him, hold him, in the room hidden from him, or out of the room. It's all the same. This. kid. hates. falling. asleep.

Since then I have talked to his Massage Therapist, Maria Mathias. She is world renowned and let me tell you, every time she seems him I am amazed at how well she understands the slightest of signs and symptoms. She is the one who opened a whole can of worms of understanding for me in this department. It's almost like realizing there is an entirely different universe out there, right in front of my face that I never even paid attention to. This universe I speak of is that of sensory integration and self regulation. Yeah, if you have never heard of it then this will all be new to you too. Basically, as normal functioning people we are able to process the difference sensory stimuli in our daily lives without needing much help to make it through, cope or "integrate". However, there are many others whose brains actually have a very difficult time with this task. It can manifest in a lot of ways, and there are varying extremes. In Micah's it almost seems as though outside increased stimuli actually sedate him rather than ramp him up. For example, at Disney, he just sat in the stroller taking in all the sights with his big blue eyes. He loves it, and fell asleep easily as long as we were moving. Before today, I never heard anything about "sensory input" and how that is needed. Things like chewing, and having a weighted blanket are examples of sensory input. I can relate in some ways, as I do not sleep well if I do not have a heavier blanket covering me. I just never thought of it as an actual "thing"..it just was what it was. Not sensory input. Welcome to the world of terms for things I already knew existed without realizing they existed.

Anyways, I am rambling again, but it is coming to my attention that for many reasons including those directly related to his prematurity, Micah actually has some sort of sleep disturbance issue. We dont know exactly what it is yet, but this kid has THE hardest time falling to sleep when left to his own devices. We are now brainstorming ways to help him with these issues. So far on the to do list I have get a weighted blanket for sleep and and going to order something called a chew stick---something the MT mentioned today when she saw Micah chewing on his sippy, saying that it looks like he needs to chew on something for sensory input. A fellow preemie mom passed on the chew stick idea and I am so excited.

On the bright side, it is very helpful to understand that there is a legitimate reason as to why M is having such a hard time with sleep. Lot's of people want to offer up advice on sleep training, which probably works for kiddos without these issues...but trust me they haven't and they may never work. It's nice to know that it's not something we did or didn't do, but rather an issue that we have to face and find a solution to.  I am glad that I can understand my son a little better now, and I do find myself feeling less frustration with our lack of success in the sleep department.
I am sure many of you have no idea about the last stuff I have been talking about, but yeah, welcome to my world! I just hope it's a step in the right direction. I feel bad for Micah that sleep has to be such a horrible experience for him. And honestly Cameron and I are going bonkers trying to figure out what in the world will help this kid go to sleep peacefully!