"God is great, my friends." -Unknown-
I am tired today. My dad leaves Thursday and I'm a bit sad about the prospect. Shane's mom will arrive Thursday night and will stay until around the 4th of July. After that we'll be balancing things on our own. I think it hit me today that we will soon be without help, it was kind of this weird surreal moment and suddenly I just became extremely overwhelmed. I keep praying God will grant me the extra energy to get past the nights of little sleep to be able to work patiently with both the boys and somehow, hopefully, we will work out a system.
I'm also on the emotional side and just got done briefly reading (both boys are down sleeping but that lasts just minutes around here) my micro-preemie Yahoo! group postings for this morning. One Mother had just joined and was asking for support as her baby girl was in the NICU with a grade 4/bilateral bleed. The doctors were telling her all the horrible outcomes that exist when it comes to babies with bleeds and asking if she was interested in "comfort care."
She is beside herself and I am crying for her. It still hits a tender spot when I read emails from these moms with babies similar to Jonah. It was just a few months ago that I was sitting where they are, overwhelmed to know that my beautiful son most likely would have such a grim outcome. I remember trying desperately to control my emotions and just breaking in to pieces one day and having to be left in the hospital room to cry while Shane went to tell our families that Jonah's bleed had worsened and that it meant he would most likely have severe disabilities. I remember asking Shane to send my father in because he was the only person I could see and I remember him holding my hands and crying with me. I remember sitting there, staring at the doctor as if this wasn't my life, as if some horrible mistake had been made, and listening as he asked us if we wanted to change Jonah's course of treatment because of the situation (i.e. asking about comfort care). I remember Shane and I clinging to each other and saying that the choice was not ours and that we believed that decision needed to be left to God. And I remember the months and months of tears as I tried not to think that it was very possible my son would never walk or run, that he may never be cognitively aware of his surroundings and I remember more than anything the complete devastation.
But as I sit here in tears, reading her email with all these emotions flooding back to me...I remembered my resolution to believe. God is the ultimate physician, that is what one loving NICU nurse told me and I will never forget her choice of words. He is the ultimate healer. Both Shane and I always told each other over those terribly long NICU months that if our sons where meant to come home to us, they would.
Jonah survived 7 surgeries and several horrible infections to be the first child to come home, without oxygen. Yes, the past couple of months have been rocky, with ups and downs but our Jonah knows us. He recognizes Mom and Dad. He coos at us, giggles and babbles and even those who have not yet met him say just from our blog that he is a fighting spirit, that his determination can be seen from our photos and videos.
That is why I chose to post today and include the opening quote, for it is true: God is great, my friends.
Just the other day, another Mom in Tennessee (hello Amanda!) whose son is almost carbon copy of Jonah emailed me to say that our battles continue but she chose long ago to cling to the above mentioned quote and put all her faith in a higher power.
This is what I emailed this sweet Mother today, I told her the decision would be hers but I told her our journey, our choice and our joy at having Jonah in our lives. I also told her that if she believed in God and prayer now was the time to acquaint herself with both for direction.
I am sure we will have some cloudy days ahead and I am sure there will be days that we look at our sweet little man and try so hard to not think of all the things he deserves to have but does not, but I also know that the more powerful days will be those where he touches our faces and smiles as if to tell us it will be alright, it will be ok and that yes, God does love us, each of us.