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!