Friday, October 26, 2012

Waves of Emotions.

For anyone that knows me, knows that I am a talker. I found myself in Indy having a hard time talking, on my bad days I couldn't articulate what I wanted to say, I couldn't find the words to describe my pain, my worries. My, wheel turning, brain was just moving too fast for me to find the correct way to say even the simplest sentences. I find it easier now, whether it be because of time passing, being home, or being surrounded my friends, family and support. Talking, to me, is therapeutic it is a release. But at the same time, as I talk so calmly so descriptively about our experiences, from bedrest, to seeing my boys for the first time so fragile and helpless, to the whole foggy day of Conor's passing, it just brings on floods of emotion and memories.

The night the boys were born, Blake was so sick. He was swollen and requiring a lot of support and we were not really suppose to touch or stimulate him. However, with Conor we were allowed to be at his bedside and were actually informed we could touch him. This of course I think was because God knew we needed our time with Conor that night, and Blake would another day with us.

I remember the first time I got to touch Conor.

I remember Zach and I laying our hands on his little body.

I remember a nurse asking if we wanted a picture. A picture of Zach and my hand laying on him.

I told her no. I was so tired, so worn, and I sure we would be able to get that picture later the next day after we had both rested.

I said no. (sigh)

I said no...and that I remember so clearly-- but why?

I'm not sure...maybe a little guilt, why didn't I get the magnitude of that moment? We just don't know the importance of every moment, of capturing every memory, being thankful for every breath, every day, every little milestone...until something so special, someone SO important is stripped away from us.

It isn't until a tragedy happens to you personally... that you get it, at least I didn't. Tragedy strikes and you begin to reflect on your life. Thinking back on all the trivial things that used to be such a big deal, realizing now how petty some things really are.

From the house, clothes, parties, your car,... I used to care about things that mean so little to me now. I remember when my doctor told me at my 19 week appointment that at 28 weeks if not sooner she would be placing me on bedrest... I was so upset. BEDREST? I won't get to see my friends, go out, work. I actually remember crying about it, "how will I make it weeks on bedrest? I can't do anything? This is going to be the worst." But now having my bedrest stripped from me, and my boys taken so early I just remember begging God for one more week...just one more day...another hour even. I am not perfect, I see my imperfections so clearly now. I find myself at times being selfish, mad at trivial things, and sometimes I know I say hurtful things to the people I love the most. And why? I struggle, I have bad days, many more than I like to share. Some days hit me like waves. Waves of raw emotion at the surface, you can see it in my face, my demeanor, I wear my emotions on my sleeves for all to see. These waves hit sometimes without warning, stemmed from a lyric in a song, or a facebook post that seems so maddening to me "How could someone complain about their screaming child when I don't have mine?", and then sometimes nothing triggers it except longing. Longing for my baby.

There are many days that I will remember as life changing but the day Zach and I buried our son will be the day my life changed forever. My life became clear, became about something SO much bigger than me. I learned to place my trust back in someone bigger, to lean not to my own understanding.  Days like Wednesday and Thursday prove that I placed my trust in the right hands. I know Conor also is still with us and he is working so hard as his new role, not as our child, but as a guardian angel. I know after this weeks appointments with Blake that someone's hands are on him helping him, helping him to succeed in all aspects of life, someone is helping to mold him, and I as a mother can only hope to believe that Conor has so much to do with Blake's progress.

Wednesday Blake and I went to the pediatrician as I said in my previous post. The dreaded 6 month vaccines but a part I didn't mention was his progress, Blake is on a steady track of weight gain, growth, and healing. All of Blake's old surgery incision are healing well, the doctor even thinks some of them have shrunk as he has grown. His pocket of fluid that was thought to be a hernia has almost completely dissolved. Blake's lungs are clear, his eating habits are where they need to be and are increasing daily! He is in all since of the word thriving! Thursday was the big test with therapy. The first developmental pediatrician appointment we had was very disheartening. The doctor was, for lack of a better word, so negative! He had told us the worst case. He said Blake looks good but his legs, neck and hips were tight. He was exhibiting a type of tremor in his legs called ankle clonis that could go away but could also worsen. He said Blake may eat fine now, but quite possibly could stop eating all together as he ages. He could do this BUT BUT BUT BUT BUT.... we try to focus on whats before the but, what he is doing. Because as I mentioned earlier we are just thankful for every day, hour, minute we are blessed to spend with him, and why focus on the negatives when there is so much positive!?! Therapy started at 0900 Thursday morning, I had already convinced this would not go as well as his first PT a few weeks ago, he was fussy, has had a low-grade fever because of his vaccines...I was just sure he was not going to cooperate. (WHOOPS there is my negativity- and I was just gripin about others!) But boy was a I wrong!! That boy woke up happy and ready to go! LET ME EXPLAIN. For therapy Blake is held up against a standard of his "Adjusted" age rather than his "Actual" age. Blake's "Actual" age is 6 1/2 months, his "Adjusted" age is 12 weeks just shy of being actually 3 months old (which will be the 29th of this month) in all milestones including rolling over, pushing up, head control, reflexes, and many more factors Blake has meet all but 2 in the 6 month range!! And the 2 that he hasn't meet he does he just doesn't do them all the time (rolling belly to back, and pushing up with arms for longer than a few seconds at a time.) BUT WAIT...that't not even the biggest news!! Blake at 3 months adjusted and 6 1/2 months actual, attempted in therapy to begin learning the elbow and knee milestone which moves to crawling, and even did a few army crawls forward which is an 8 month milestone!! Our therapist kept reiterating how BIG this was. She stated she takes care of approx 20-25 kids at one time, for 22 years and has only had one child at Blake's prematurity do these skills at this age and that is without all the problems Blake has endured in his short life!! I can not explain to you how excited, proud, and overwhelmed that made us feel! We knew he was a miracle but WOW! This is not to say he won't have some obstacles, and we won't still hit some bumps and twist in life...but we have him in our lives and we are just so honored that he is our son.

It are small victories like this that make me think of Conor, and think of what it would be like, how he would be doing, where he would be developmentally? What would his smile would look like? Would he have my green eyes or Zach's blue? Would he have a big personality like myself and Blake or would he be more relaxed like his Daddy?

I wish I knew the answers to these questions, and I struggle with the fact that I just wont. That every day that passes I have to close my eyes and think hard of what his skin felt like, what he smelled like, I try so hard to remember his touch, but mainly, I struggle not to forget these little memories that I have. The compassion of the nurses, the respiratory therapist and Dr. Jaucian at our bedside. We were enclosed in a circle surrounded by family as we said our goodbye, Zach holding me, me holding Conor, Blake right beside Conor in a separate isolette. Conor's whole family, there, with him as he said goodbye to us and hello to the infinite paradise, paved with golden streets, and endless love, and warmth. As hard as it is to remember, it is truly a breath of fresh air to think of the glory that welcomed him at our goodbye, and his fresh beginning. A life of eternity with his eternal Father. Now he can be with Zach, Blake and myself, healthy and pain free....just as our angel instead, and after this week with Blake, we know he is pulling some major strings up there! 

Blake's a little stomper...working those leg muscles!

Women love battle scars! That must mean the girls are gonna LOVE Blake!!

Daddy and Blake snuggling.

Blake doing the John Wall dance.


"For YOU are my rock and my fortress.
Therefore, for Your name's sake, lead me and guide me. 
Pull me out of the net which they have secretly laid for me.
For YOU are my strength."

Psalms 31:3-4

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