Coming up for air .....

I should have been in bed awhile ago.But sleep would not or could not come to me.My body,although exhausted,could not be coaxed to give in and give up.Perhaps it wasn't my body after all.Perhaps instead it was my head.My head filled with a million and one different thoughts in some moments but then again, strangely feeling void of all thoughts in others.Able to string together meaningful conversations at times and at others,unable to coherently put two single words together.The first week of admission always feels a bit like submersion.We sink,like rocks, below the very surface of our lives,or life as we knew it,and we hold our breath.Struggling and fighting and doubting an praying and, just as quickly as we have been plunged beneath those raging waters,we reemerge and come up for air.Today I feel myself resurfacing but let me tell you, it is a struggle to reach the top.This admission,8 days in,already feels so heavy.I need to say and say again and reiterate, that it truly has nothing to do directly with Zoey.She is doing her thing,the very best she can.And then some.It's me.Totally and 100%,me.I am antsy and anxious and edgy and scared and sad and quite frankly ... pissed.Every single day that floor brings more questions than answers and as much as I tell myself that it is not for me to question or be given the answers,I still question and I still continue my quest for answers.Useless really.I had a lengthy conversation with Caitlin on the way home tonight.At the end of which,we decided that this leg of the journey feels absolutely surreal.I could never,ever have imagined,spending portions of my day in conversations with other parents, that revolved solely around the mortality of our children.And the weird thing is ... the words flow effortlessly.Matter-of-factly and usually there is no dancing around the elephant in the room.I could never,ever have imagined,that right before my very eyes, a very sweet,longed haired five year old roommate,would lose practically her entire head of hair in a matter of a few days.And to watch,a life altering event such as that, done with absolute acceptance and adaptability, as she pulls on a hat and skips innocently to the playroom.I could never,ever have imagined, that in my life time I would stand at the threshold of a hospital room,eye to eye with a friend, a fellow mother,holding her precious baby boy,knowing in that moment, it was quite possibly going to be the very last time that I had the privilege of gazing upon that sight.Not ever.Surreal would be an understatement.This post could be filled with more surreal moments of our new normal but in the end,the hashing and rehashing of the unfair happenings of the 4th floor gets me no where.In order to fight my way to the surface,push past the current,I must visit and sit with and process and remember,each and everyone of these surreal moments.And after,find the gift in each one of them.Somehow I always do.Ones are easier than others but I search and I find them.The other night I was flapping,tonight I am swimming or rather treading water at best.My faith continues to be the number one thing that sees me through my days.That and Zoey.And of course the love and support of our family and friends and you my blogging community.A gift in and of itself,borne at another time when life seemed darker than I would have liked it.The out reaching in comments and emails is so beyond touching.Virtual strangers that take time out of their days and use their precious moments to let us know they are thinking of us and praying for us and sending us good vibes.Many of which are fighting battles of their own and with their very own children.We are humbled.I can never and will never say that enough.On a high note ...Wednesday Zoey and I are going to have some very special visitors.We are going to meet,face to face our little buddy Reid and his mommy Cheri.They live relatively close to CHLA and well,Wednesdays the day.I will be posting pictures of that for sure.I do believe the deep,dark ramblings are over ... at least for today.Sometimes I think it is important to get this out and share, in order to help people,on some small level,understand where I can emotionally be found on certain days.Those days can also morph into weeks.Just a casualty of the process.I just hope that maybe,just maybe, the unanswered calls and emails or uncommented blogs,won't be taken personally.Some days I am just in it deep.This week I was drowning.

*Taylor and Brandon came for a visit today.What a nice distraction it was.Zoey just loves company and she was so excited when they came through that door.They brought this little push car for her and boy did she love wheeling around in that.She sits fairly upright in it,with the occasional left side stroke lean.Not nice I know ...but true.We had a number of comments on her lean.All innocent enough but when I said she had a stroke and had just mastered sitting well,an awkward silence followed.But by days end she was a pro.And the mask .... do you think it is big enough for her face?I plan on making millions when I develop that child size receptor mask for Down syndrome children.Between the size of it and the fact the straps don't fit on the back of her flat little head ... suffice it to say ...it's ridiculous.