{Speaking of Madison}

Today I took part in Madison's first IEP meeting.  Most of you who have heard Madison speak probably have noticed that she stutters -- well it's not really officially stuttering but it sounds kinda similar.  She started with this issue about two years ago and comes and goes along side life's stresses and such. I am in complete agreement that she needs some help but it's really a tricky situation.

It seems like the more people focus on her speech the worse it gets.  My girl is very smart and if she can get you to hang on to her every word  -- she will.  At the same time there needs to be a balance, but again it's just tricky.

I left the meeting feeling happy about the services she will receive at school but also left with this frustration with the school system. 

My daughter is five years old.

She has been in school only 36 days -- ever in her whole life.

Yet today I read about how she is behind in reading and she is considered "at risk" due to her letter sound recognition.  What in the world?  I know these are just little tests and tools to help teachers figure out where a child is at but, gee wiz.  I mean, I look at my daughter and I see a smart and creative little girl.  I want her to learn how to play.  I want her giggle and wonder -- not stress out that she needs to learn to read by the end of kindergarten.

I know it's all about state regs and such, but after loosing a child it really changes they way we see life.  Knowledge in so important but learning to live life, in our minds, is so much more powerful.

With that said -- after the IEP meeting Madison and I went to Target and picked up alphabet flashcards and "how to make your child a genius in 30 days" type books.

After all, my little girl is the smartest in the universe  -- we just need the rest of the world to see that :)

{Becoming A Member}

So many things happen after the death of a child with a chronic illness.  Life as we knew it completely changed, and it goes way beyond the obvious fact that we can not longer touch or see our little boy.   It means that every aspect of life, the people we spent most time around, the way we leave our home, the mental processes that surround our daily life -- it all changes.

When you are in the world of Special Needs, many individuals are lucky enough to find others -- other families who's worlds have been rocked by the diagnosis of their child.  You can swap stories and share tips for going about every day life.  It's a club, that while no one would choose it to be theirs, so much comfort can be found in the support of other families.

Death changes all that.

While we were forced into a new and different club, this one does not advertise for it's members.  Finding other people who belong to this group is hard to find -- not because they are not out there but often the pain that accompanies membership is often to much to handle.  In a way it's a secret club where it's often deemed as inappropriate to talk about -- and sometimes it's just easier to admit the reality doesn't really exist.

Last night Adam, Madison and I attended the A. I. DuPont Remembrance Service, a memorial service to remember all the children who have died.  The feeling of walking in that room was surreal.  There were so many hurting families -- for some the pain was very raw and others many years have past and this was the one time of year they could just remember and hear their child's name read out loud -- an intense reminder that their child really did, at one time, have an amazing physical presence here on earth.

It was very emotional to say the least - for all of us.  Gavin's doctor whom we consider our good friend shared a few words, and even though I'm sure he said good things, my emotions took over the moment I saw him walk up to the podium.  You see, along with loosing our child we also lost an amazing life -- an amazing group of people that were so very special to us.

So now we get to create yet another amazing life -- not trying to recreate what we had with Gavin, but rather writing a new chapter -- maybe even a new kind of story.   

A different plot, with different adventures and even brand new characters -- but still based on a true amazing story that once occurred.

{Patience is a Process}

There's no hiding that fact that I am a go get'er.  I dream things I want to see happen and I try to make them happen in any way shape or form.  I'm also a little impulsive.  I see things I like and I feel like I need to have them right now -- I mean like right now.  It's a bit of a flaw, but thankfully God knew what he was doing when he put Adam in my life -- he is a nice balance to my chaos.

So here we are in the process of adoption.  This is such a crazy process and it's a process that takes patience and trusting God to a while new level.  Today I was able to speak with some of the workers at our agency regarding our process and our first possible match.  I learned more about this sweet little girl that we have been praying for, and well, -- fell way more in love with her.  This is where the process gets crazy. I don't know if this child is mine or not.  I don't know who she will call mommie and daddy -- and not knowing is so very hard.  Like I said before, if we are chosen for this little girl or not, it's really a win/win situation.  This little girl will get a forever home and that's what matter's the most.

But I Adam and I really want to be this little one's mommie and daddy.  It's really hard.

We should soon have a date for our interview with the county, which leads me to my next point.  How exactly does one prepare to intreview for their porssible child?  Wow -- I'm so excited but very nervouse for this part of the process.  At the same time we are totally putting it in God's hands.  I think if I keep fousing on that it just takes so much anxiety out of the process.

It's a reminder I need to give myself on a daily basis. 

stress, stress, stress --- oh ya that's right, our little one is already waiting for us...

Patience. 

{My Best Fit Review}

I have had this year long battle with trying to find the right pair of jeans.  Let's face it my body has changed so much these past few years.  Between having two beautiful children and spending three and a half years living in a hospital my body has been through battle.

I heard about this thing at the King Of Prussia mall called "My Best Fit," a body scanner that helps you find you perfect pair of jeans.  At first thought that, number one, I would have to get naked and number two I thought it was a scam -- and yes and I thought about the naked part first.

Today Madison and I tried it out.  We walked up the the booth (which is kinda on display in the middle of the mall) and told the young girls we wanted to give it a try.  She got some basic info, like my name year of birth and zip code for marketing reasons and then I just stepped into this glass shower stall looking thing.  She made sure I didn't have any belts, watched or coins in my pockets and then this giant scanner went around my body two times.  I'm sure I probably exposed my body to some kind of radiation -- but in my mind it was worth it.  


Oh, and there is no charge.

After the scan was done they printed out a little receipt with a bar code on it.  I scanned the bar code at one of the little kiosks and it printed out the sheet with all my possible matched of jeans.  I have about 15 choices and they all ranged in price from around 30 all the way up to over a hundred.  It showed me what my best size and fit jean was -- all the way down to the specifics.  

I decided to try on a pair at the Gap, since I tend to like there clothes.  The first pair I tired on were a little big but I tried on the next size down and I loved them.  The girl at My Best Fit said that the machine bases most of it's suggestions off hip size -- and well since my hip are huge -- I mean "well formed", the suggested size was a little big.

Since I bought a pair of my suggested jeans which I should add were 40% off today I was eligible for a five dollar Starbucks card, but I didn't feel like walking all the way back to get it.

So there you go!  I highly recommend this scanner.  Maybe they will read this and give me a free pair of jeans!

Maybe.

{The Process of Saying Goodbye}

This entry was written for the Children's Rare Diease Network...

Living life beside a child dealing with chronic/terminal illness is a life I'm not sure anyone would ever wish upon another human being.  It's a life that often begins with saying goodbye -- a life where every moment is questioned to be the last.

If you look really hard -- Is it possible that this process of saying goodbye could be viewed as a beautiful song played out over time?  -- an intimate glimpse into the deep love a child and parent share.  

I remember very clearly the day we were told our little boy would soon die.  Despite the shock of actually hearing the words spoken -- not as a possibility, but as truth -- that reality of death was always in the back of my mind.  As I look back over our life with our little boy I see how that reality tucked away in my heart and mind helped us live an amazing journey, not living for not the next day but living for the next breath - the next touch.

The process of saying goodbye changes everything.  It allows for sweet goodbyes to be spoken over and over again through everyday events.  It allows for a hug to last a little longer and a touch to not only reach the skin but touch the soul and make a lasting memory.

I remember laying next to Gavin with my hand on his chest and feeling his little heart stop beating.  Despite the pain the struck me on the deepest of levels, it was the moment that we had been preparing for.  The finish of our journey. It wasn't a sudden end of our story but rather the beautiful completion -- a book to be read over and over.   It meant that my child was not longer suffering.  It meant that my baby's failing body after fighting so hard for three and a half years could finally rest.  


It meant that his spirit was free -- the process was complete.

{Growing a Girl}

Madison is growing up so fast and I'm not so sure my mommie skills are growing at the same speed.  Growing a girl is hard.  Modern culture has defined our little girls into something God never intended them to be.  I want to teach Madison to be herself -- I'm learning this is easier said then done.

Ever since Madison stared kindergarten I've picked on on different attitudes and phrases that she has picked up from her friends at school.  Phrases, that although aren't totally horrible -- they just are not what I want to come out of my little girls mouth.  It's tough.  The easy way out is to shelter her from society but does that really help?  I'm thinking not so much.

I want my little girl to stand in the midst of chaos and choose peace -- to linger with what is considered ungodly and shine the truth of what she believes.  Again -- it's tough.

Today I pray so hard that somehow Adam and I can raise a little girl who is not afraid to be different.  We all know that standing firm in what we believe in and not following social norms brings hardship.  The mommie in me wants to just prevent the heartache but my heart and mind knows that by sheltering her from heartache it prevents God from using those hardships to mold and sculpt her into the women she will one day be.

Ugh.  Growing girls is tough.

{Some Thoughts}

I've never been a fan of looking to the past.  I've always felt the no matter the hills and valleys in a person's journey -- each day is a chance to begin a fresh start. 

As I've been looking back on our journey these past four years I can't help but challenge my prior thinking.  Looking back over the life of our family and death of Gavin,  I see how these past few years have shaped and formed our family into who we are today. 

I guess a better way of putting it is that even though Gavin's death is a huge part of our story -- it's really his life and the beautiful story of hope that God choose to write through his life that truly defines who we are today. 

As we take time this month to just remember I can't help but get super excited about how God has put the peices of our life as a family together. Our life as a family of four, the lessons we have learned, the death of our little boy and our journey to bring our new little one home -- they all just fit together, each one building on the prior. 

I look at our family today and I can't help but see the amazing beautiful hand of God at work.  I feel like our life story is this beautiful photo giving a small glimps of what God is all about -- taking what most consider undesirable and turing it into a masterpeice.  And the best part is that we do nothing.  Just follow and trust and He just puts all the right colors in place.

It's all just very cool -- totally freakin cool.

{Looking Back}

I have had a few conversations this past week about the anniversary of Gavin's death soon approaching.   People wonder just what that day will be like for me as a mother and us as a family.  Truth is, for me I don't really know how it will go.  So far over this past year I haven't really felt like holidays or special occasions were any more difficult that all the other 365 days.  Truth is everyday I wake up and face the cruel reality that my little boy is gone.  There is not a night that goes by where I'm not reminded that I should be cuddling two children and tucking my two children into bed.  

If anything this month seems to be more a time for just simply remembering -- the good and bad.

Today I sat and looked at where we were this time last year -- it's crazy how life can change so much in just one year.  This time last year we were witnessing the Mitochondrial disease take over Gavin's mind and body.  I remember so vividly a pile of syringes of Haldol sitting on my counter top, as I was on the phone with Gavin's doctor and he was giving me orders to up the dose until Gavin was under control and comfortable.  Ugh.  Out of all the things I watched Gavin suffer from, the loss of his mental abilities was the most difficult -- it was as if he was being tormented by his own thoughts and feelings.

I looked a little further down the road and saw that less than two weeks later we were finalizing our plans to let Gavin go -- allow him to find peace.  Little did we know just a few weeks later we would say good bye.  Life is so precious.  It is so short.  We are never promised tomorrow -- at least here on earth.

In a very strange and odd way it feels kinda good to remember our last month with Gavin. Even though the end was so difficult and heartbreaking, the thought of my baby still suffering is even more heartbreaking.  Over our journey with grief we go though stages of only remembering suffering and being able to see just how beautiful his passing was, to remembering the good times and having trouble making sense of such a horrible death.  Looking back over this month last year is a good reminder to me as a mommie just why it was time for him to go.

I've been remembering the good times these past few months and now as one year soon approaches I am remembering what this last month with our little boy was like.  I remember begging God to just take him home -- and when he did feeling an overwhelming sense of both sadness and joy at the very same time.

Looking back on his suffering helps me understand that Gavin was done here on earth.  Gavin was ready --  even if mommie and daddy longed for him to stay.  In the end the deep love Jesus had for my baby was very real -- His love for us as a family felt unchanged.

So many things can change in just one year - just one day.  Thank you Gavin for teaching mommie and daddy to treasure each and every breath God give us.  Thank you for teaching us how to do this heartbreaking yet ever so beautiful thing called life!


God taught us amazing things through our sweet little boy.

{Listening to My Girl}

These last few weeks Madison has just exploded with personality.  It has been so much fun to just sit and listen to her -- as  if we can see her little spirit changing and maturing right before our eyes.

 

When Madison started school last month she had some regression in her speech, which she has always struggled with and is usually directly related to stress, both good and bad, in her life.  Well these past few weeks not only is her speech improving but you can just see her confidence and excitement growing as well.  It really is so special to see.

This week Madison has been so excited about her new sibling coming.  Although she knows we don't really know who she/he is or when they are coming, she can totally sense that this is something to be very excited about.  She has been talking a lot about wanting to throw a welcome home party for her sister or brother!  How sweet is that?  It really makes my heart melt  -- as it seems like she really gets "it".  That this child will be her sister or brother with no strings attached.

She also has been talking about needing to make a new player on the Nintendo Wii system -- just in case she/he wants to play!  Then this morning on TV, she was watching little Bill and they were talking about sign language -- she got down from the table and said, "I need to watch this, you know, because my new sister or brother."

So much fun!  Things are progressing although we probably will not get an interview for this first possible match child for another few weeks.