MaGerks

Thank you so much to those who came to MaGerks to support our fundraising efforts last night.  I cannot express in words how humbled we are to have such a great group of people who surround us at these events.  It is simply amazing. 

In addition to our old friends {meaning friends for a long time, not old necessarily} and family that come to support us at these events, there are many people who we are just getting to know.  These are individuals and families from the kids schools and the local community who heard our story and want to help.  I am so touched that they take the time to support us and come to these events despite not really knowing us all that well.

It is no secret I get nervous at these types of events {where people gather to support our family} As I have said before, Mark and I are two people who would rather blend in than stand out.  But we always have such a great time talking with everyone.  We leave feeling recharged, re-energized and embraced by our community of family and friends.  It is a humbling experience so thank you again.     

Cleaning House and Adoption Issues part 2 of 2

So my other thoughts when I stumbled upon this picture was an aching with love for Libby and a wish that we could protect her from all pain.  I wish our total and complete love for this cute little thing could prevent and protect her from the feelings of uncertainty, loss and feelings of rejection that seem to be unavoidable with adoption.  Mark and I have been completely head over heels in love with this little girl since the moment we laid eyes on her.    Libby's adoption comments began at the age of five and usually come in response to being disciplined, "she wishes she were adopted by a nicer family" And recently we were talking about her birthmom choosing us to be her parents and apparently she had a lightbulb moment, "If my birthmom had chosen a family who had more money, then I could have a horse right?"  {I'm not going to lie, that one stung a little.}

Then there was a time period when she was googling "taking care of a baby" because she wanted to understand why her birthmother was unable to care for her.  It hurt my heart that she was searching for answers to questions that she felt she was unable to aks us.  

 

Recently and most troubling was when I told her she needed to help with something because she is a part of our family and she responded with, "Barely, You know, because I'm adopted."  This prompted a lengthy dinner time discussion in which we talked about family and what makes a family.  I always welcome these discussions as difficult as they may be.  It gives us a chance to clear up any misconceptions she may have conjured up in her little head.  I was very proud of us because we were careful not to rush through the conversation and did our best to hide any uncomfortableness.  Putting our insecurities aside is often difficult. 

I wish the amount of love we have for her could prevent those little twinges I see in her eyes when I have to tell doctors that we don't know her family medical history or when someone talks about family members looking like each other.  I wish she would not feel like someone "gave" her "up" but I'm sure some days she will see it that way.  I hope we show her how much she was {and is} wanted by us and how happy we are that she is a part of our family.  This picture was a good reminder for me of just how much we love her.  I explained to her that when she came into our lives, she made us a family.  She seemed pretty pleased!   

Getting off the bus

Click on the picture to play.  Sorry it is so choppy.  No I am not drunk, just not a good videographer.  And he is not close to being run over by the car going by. 

Cleaning house and Adoption Issues Part 1 of 2

I have been on a three week cleaning and reorganization project. A very sweet friend who is superorganized has been helping me.  She spent three hours here one Friday helping me discover unchartered storage areas in my house. Anyway, I am proud of myself for sticking with this and am sure the end result will be worthwhile. I will never be a Type A personality but I am hoping not to spend an hour a day looking for lost items!
Through all of this I have stumbled on numerous things from the past that have made me smile and cry. Some of the things remind me of how far we have come, from Mark and I disagreeing if there was something "wrong" with Nathan, through knowing there was something wrong but not knowing what and all the way to dealing with the definitive diagnosis. It takes me back to a time of blissful innocence.  Infertility is painful but having two children with a progressive, fatal disorder is a deeper more agonizing kind of pain from which there is little escape.  So pictures like this, are difficult for me to see.  I was proud of myself for stopping several times from looking through things I knew would make me sad, things like Libby's progress report at a typical preschool.  But this picture was in the middle of a file folder containing tax information!

This picture is from February 2005 so Libby was almost two years old.  She is so stinkin cute!  It reminds me of how normal things were then, how much we enjoyed her!  We had waited so long to be parents!  I was actually newly pregnant with Nathan so it was a time in which I felt that our trials were behind us.  We were past worrying that someone from Libby's birthfamily would appear and done spending money on expensive IVF treatments.  It reminded me of all the pediatrician visits from which I would leave happy as can be.  I proudly took full responsibility for Libby's weight gain and ahead of schedule development!  Little did I know how wonderful it was.  I am so sad that we did not get to experience that a second time.  Nathan and Bennett's early childhood have been so painful.  Each appointment dreaded and many met with disappointment over a lack of weight gain and other reminders of their genetic disorder.  Just today I had a three year check up for Bennett.  The pediatrician seemed sad when he noted how Bennett's little body has become just like his brother's body.  It reminds me that this disorder is hurtling along regardless of how much we fight it by praying and fundraising.  Sometimes it just seems all bad.  Whem the pediatrician asked how Nathan was doing in school, I described Nathan having very minor difficulty focusing, looking around, worrying about his peers.  It was an effort to bring some normalcy to Nathan.  After all, what six year old doesn't daydream in Kindergarten?  But the pediatrician responded that we don't know if this could be a result of Progeria or even from prematurity.  That threw me for a loop!  It made my mind go crazy worrying about how Nathan and Bennett's prematurity have affected their cognition, development and behavior.   This is turn had my mind thinking about all the unknowns regarding Libby's inutero experiences.  Did she get everything she needed and was there anything she was exposed to that affects her development, behavior or cognition?  We don't know. And all these unknowns sometimes feel like a Mack truck sitting on my chest.  Nathan is fine with his appearance now and is able to get on and off the bus, but what about a year as his skin becomes more wrinkly and his muscles become stiffer. 

At a church womens retreat last fall, our bible verse for the weekend was Philipians 4:6, "Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God."  Every situation?  Really?  When I hear people on Oprah-type shows talk about overcoming adversity, they are not talking about us.  They are talking about the end of a relationship, the loss of a house or something else equally difficult but not having two young children age before their parents eyes.  But the Bible?  That must pertain to our situation.  Its funny how being this low is forces you to depend on God for strength and hope.  I can honestly say that I don't know if I would be here spiritually if it weren't for our current situation.  I would have thought we were doing fine on our own!  One of the few good side effects of having two children with Progeria.