Saturday, May 21, 2011

HELP SAVE A CHILD

Friends, when I started this blog it was to help heal myself.  Over the past 5 months, it has become clear to me, that this tool, this blog, can be a medium to which, I can help other children and parents, in their healing and in their needs.  The following story is call for help from good people to whom I have known for many years and who are in need of hope.  Hope in this case, comes in the form of medical research.  Please take the time to read their story and help in anyway you can.  I couldn't save my save my child, but, maybe I can help save this one.


A week after Isaiah was born, the call came that would change everything. Isaiah had tested positive for cystic fibrosis on the state screening. Additional testing confirmed that he did indeed have cystic fibrosis, a genetic disease that strikes the lives of approximately 70,000 babies a year, worldwide. That call changed how Isaiah lives. He uses a nebulizer every day with a special medicine that thins the thick mucous his body produces. He gets a medication put up his nose to help kill bacteria that he might inhale. He wears a compression vest that fills with air and shakes his tiny body to dislodge the thick mucous from his chest. The biggest difference is that he lives his life in near seclusion. He doesnt go to Mommy and Me, he doesnt go to the mall, he doesnt have play dates, during flu season even the grown ups allowed to enter the house must have had a flu vaccine in order to be around him. One infection could be the beginning ot the end. You can help us to help Isaiah, you see the Cystic Fibrosis Foundation has medication in trials that could change his world b
ut there is no government funding for this, there are only private donations given by people like you and me. We are his future so on June 5th, we will walk for Great Strides, the Cystic Fibrosis Foundations largest annual fundraiser. Your support means the world to us.
 

Wednesday, May 18, 2011

Failure & Success

It's not how many time you fall that counts; it's how many times you get back up!

Tuesday, May 17, 2011

Dominic

It is without fail that this (the picture to the left) is how Dominic greets his sister.  He walks right up to her particular site and stands directly on top of her marker.  Big deal, right? Well interestingly enough, he only does this to her marker.  Another interesting point is he seems to know exactly which one is her's.  Without fail every time, this is his way of saying 'hello'.

Dominic is such a lively child.  He is quite a character too.  His nature is sweet and kind.  He is determined and stubborn. He is smart and thoughtful.  One of the things I love best about him, is that he is a happy child.  He his never one to sit in a corner upset, or hide behind my leg in a sheepish manner.  He loves to play with other children regardless of size and age.  I often call him a Chihuahua among Pitbulls, as his tends to be the smallest one of the bunch in most cases.  He is the little dog that has no idea he is a little dog.  He just knows he wants to be in the mix.  He is a social child, and will befriend another child or adult in minutes if a good time is to be the result.  He is the child you usually don't mind having around.

Now, with all that said, there is a bossy and obnoxious side to this half pint as well.  I mentioned determination... well that is most definitely true and at time overwhelming.  I have said he has hit his 'terrible two's' early.  He knows what he wants and when he wants it.  Don't try to give him milk if he want water, and don't try to trick him that the cookies aren't in the cabinet.  He will call your bluff every time.  'Fits' have become a common scene in our house these days.  A battle of wills, his verse mine.  There are time when I wonder who will win.  Of course it is my goal to win and not be pushed around by this 27lb, 33 inch toddler.  He however is so determined and sure of himself and his wants that there are days I wonder how I will make it through one more melt down. 

Dominic love to be outside.  I often call him 'Grizzley Adam's'.  He couldn't care if it was cold or raining.  He wants out.  Fun enough, he doesn't like the grass to touch his skin.  Heaven forbid, he falls on the lawn, how will he ever get up if I am not there.  He does not want to touch the grass with his bare hands to lift himself up.  Once he fell, with no shoes on either.  He laid there crying on his belly with is hands and feet lifted from the ground, it reminded me of a seal and some type of yoga move.  It was hilarious.  I often say if I want to punish him I should take his shoes off and put him in the middle of the lawn... he'd be miserable and lost.

He is a helper.  Whether it be, cooking, cleaning, gardening or laundry, he wants to do whatever it is you are doing.  He is a quick study.  It is not uncommon for him to take over the swiffer and 'clean' for you.  Or for him to want to pick him up so he can stir the sauce.  What a sweetheart.  But most of all, he like to help you eat! He will share his snacks with you, most of the time feeding them to you.  And don't think your deserve to eat it or not is a consideration to him.  If he gets it in his head that he is sharing his snack, he is putting in your mouth and making sure you eat it.  I've eaten far more goldfish in the past 6 months than I have in my life, and most without a choice.  But, he loves food in general, mostly fruits and vegetables.  He loves fish and pork too; chicken and beef not so much.  But, pasta, that is a food he loves, very often saying and making yum and yummy sounds while he eats it.  Strawberries are another superstar in our house.  Oh boy can he throw down those strawberries. 

Dominic is starting to talk.  And his favorite word bubbles! He loves bubbles, balls too.  He often gets a ball and then running around the house with it proclaiming "ball!".  He is usually quite proud of himself when he does.  He can recognize and say the letter 'D'.  Amazing! One day while watching Sesame Street, the letter of the day was D.  I'm in the other room and hear the TV ask what is the letter of the day.  After putting the letter on the screen, I hear him say 'D', and a split second after the voice on TV says 'D'.  I couldn't believe it.  Later that day I tested it out myself.  I made a 'D' on a piece of paper and held it up.  I asked 'what letter is this"... "D" comes out of his mouth.  I was amazed.

There is so much more, that I could write for days.  But, overall, this little guys is a true blessing to me and our family.  He brings us so much love and pure joy.  Life without his could never be the same.  I love him so much I can't stand it.  If I hugged him as much and as hard as I wanted to I would hurt him.  Even when he is driving me crazy, I try to stop and appreciate the moments, because I know they will go by too fast and one day I will long for them back.

Sunday, May 15, 2011

4:30 AM

It's 4:30am and while I should be sleeping all I can think about is writing.  Yesterday was a tough day.  I was totally and utterly emerged in the land of the living.  My little son, at 18 months old, decide it was about time to start climbing out of his bed.  Down can the crib and up went the toddler bed.  I know most people would have resisted to make this change so quickly and at such a young age, but, I have faith in my little guys ability and determination.  He can do this and so can I.  Needless to say the night before this was a night filled with unwanted waking hours and a lot of crying.  I should be asleep, but, I am not.

I can help but wonder as I lay awake in my bed where this journey is going to bring me.  What will I do with my blog and how my family will be different going forward.  I am thinking about forgiveness, kindness and change.  I wonder if I will come out of this a better person than I went into it.  I think I already have, but, still I wonder.  I wonder want I will name my next child, if it will be a boy or a girl.  I do want more children, when is a matter of question, but, it is in our future.  I am thinking of my husband and is great accomplishments.  He is about to graduation mortuary school in 4 days.  It amazes me that in the face of this tragic loss, he could still maintain the ability to stay focused and graduate on time.  His determination and work ethic astound me.  I think of Dominic, and how I don't blog about him enough.  He is going through such an amazing time in his life right now.  Everyday he is doing something new, saying something new and molding into the person he one day will be.  How can I let that slip by with out a word.

I started a blog for him called 'Why I love my Kid'.  The truth of the matter is I don't need a separate blog for him.  I am 'The Funeral Director's Wife' and part of my life is Dominic.  He should be just as much a part of this blog as his sister is.  He is apart of my journey through life and he too has been effected by death.  Why should I neglect to include him in my writing here?  I was recently asked to write about him for a portrait a kind friend is doing for my family.  She obviously knows plenty about Gabriella and our emotions and life in regards to her from the blog.  But, still, I assume need more about Dominic.  I've been sitting on the task for about a week now, as though I am shy to write.  Indeed I am not shy, just blocked.  I write so much about feelings and effects of death that I am maybe unsure of how to write about the living.  I am not comfortable with this thought, which might quite possibly be a fact, that I am going to push through that obstacle and write a blog entirely about my son, here on this blog.  He deserved just as much of my words as his sister.

I know I have said it before, but, I can not believe it happened to me.  I can't believe I have buried a child.  But, I have a life to live and people in it who need me and to whom I need in return.  I push myself for that very reason.  I need to be the best I can be for them and for me.  Don't get me wrong, I am devastated by the loss of my little girl.  This is not what I planned or wanted.  But, I am not about to let it define me.  It will forever be apart of me that is for sure.  When I eventually do evolve into that person I am search for know, I will then fully and completely have my daughter ingrained in my soul, because if it were not for her, this unknown journey would not have began. 

Friday, May 13, 2011

Hard to believe

It is hard to believe that I was ever pregnant.  I look at picture from several different events while my tummy was in it's bloom and there it is- evidence that I was.  I look at these pictures and try to remember what it was like to have my daughter alive within me.  It is so difficult to even remember what is like to feel her inside of me.  All her little kicks and squirms that she did on a daily basis seem to be a distance memory at best.  Amazing to me that such an active little baby would be a stillborn.  I think it is a bit of an oxymoron.  I often wonder if her high activity level was her demise.  I don't know how I would feel about her death if she was indeed, a victim to a cord accident.  So since they aren't able to tell me for sure why we lost her, I don't have to deal with it.  Sometime, I wonder if I should obtain my medical records and see if there is anything I can piece together to make sense of it all.  But, apart of me, thinks maybe some things are best unknown.  It's been over 2 month now, and I can't believe this is my life.  I am still in shock a bit.  While on one hand I feel like I have so much of it together, on the other hand I feel like I am living a fragmented life.  There are still so many things to put in their place and so many feeling to come to terms with.

Sunday, May 8, 2011

Reflections on Mother's Day

Happy Mother's Day to all the women I love and admirer.

Today, surprisingly, was a good day; bitter-sweet, but good.  I was able to enjoy myself, reflect and feel the flow of love going in and out of my heart.  I spent a good amount of time at the cemetery today. And during my earlier visit I journaled.  I could have sat there all day.  The sense of clarity I felt today was comforting and I realized today, that I am a good mother to both my children.  The following were my thoughts as they flowed from my heart to my pen.

I am a mother.  On this day, one that may have been filled with tears and sorrow, I am feeling exceptionally good.  I am a mother.  I have a wonderfully beautiful son here on earth with me and a precious, perfect daughter, filled with love, watching over me and waiting for me in heaven.  I love them both and enjoy them both in different ways.  And I know in my heart I am the best mother I can be to each of them.  Being a mother to a stillborn, is being a mother nonetheless.  People may not realize it, but along with the sorrow and grief is an enormous amount of love that is without end and began at conception.  Each day I live my life for my children; to make them proud.  I have to do it for each of them different ways but it is done.

The word mother, I realize, is a verb, as well as a noun.  It is an action, it is emotional, it is spiritual.  I know many mothers.  Some have never even "given birth" or adopted a child.  They are the women who love and nurture those around them, be them children or a needing adult. 

Sitting at the cemetery, I am watching mother's come up one by one with their flowers and their tears.  No one ever expects to be here. But, here we are sitting on our little ones graves.  As close as we can get to them physically.  Crying, talking and praying; wishing there was another way.  I look at their faces, many hidden behind dark sunglasses, and it is all the same, a glimmer of disbelief that this is our life, and yes indeed it happened to us, our babies died.  After they leave, I try to wander past their little one's grave so that I can make a mental note of his or her name, so that I can keep them in my prayers and look after their 'garden's' when their parents are away, which is what I hope others do for me.

It is a glorious day, perfectly warmed and breezy.  God himself must have hand picked the weather.  What a great day to sit her in the grass, write and mediate.  I could stay here for hours.  With the warmth of the sun on my back and the gentle cool breeze across my face.  But, hours I don't have.  I have an eternity to come and go from this place.  And another day perhaps will allow for the hours I seek. But for today, I have to live among the living and enjoy the joyous blessing that is my son.  I hope and pray my other friends with babies in heaven will one day know the joy, light and life a living child brings to your life.  I am blessed and grateful.