Favorite "Meditation of My Heart"

Call unto me,

and I will answer thee,

and shew thee great and mighty things,

which thou knowest not. --Jeremiah 33:3 KJV

Sunday, December 5, 2010


Yesterday was such an emotional day....I have not cried that much in a long time and for such a variety of reasons! 

First tears of my day came from news that a 10 year old with schizencephaly (same condition as Vanessa) had passed away overnight after a sudden acute complication/illness.  His mother is a part of a group of moms who all have kids with this rare congenital brain malformation.  We all communicate regularly with each other so even though we live hundreds and even thousands of miles apart we feel a close bond.  We can share things that most people wouldn't understand because other people would still be asking what schizencephaly is/if it can be fixed/etc.  We share fears, victories, ideas and most importantly we share a hope that the specialist don't usually have for our children.  Hope is probably our strongest bond, but this year the group has also shared grieving...too much grieving for one year.  Tears had just flowed for a beautiful angel in October, but now again so close to Christmas.

The second tears of my day came as I updated Nate's Caringbridge.  It has been 1 year since his open heart surgery.  I re-read entries from a year ago causing tears and prayers of thanksgiving.  It is hard to believe that a year has passed since the surgery.  So many milestones...1st tooth, crawling, sitting, more teeth, pulling up, babbling, and growing to double his pre-surgery weight and over 9" in height!  So many sicknesses...bronchiolitis, fevers, ear infections, pneumonias and with the support of praying friend, Nate fighting it all off!  I don't know if I have mentioned it lately, but he is one of the sweetest babies in the world!  Nate is such a blessing to our family!
Out to see the movie "Tangled"

The last tears of the day were brought by Vanessa.  She did something ordinary for most folks, but extraordinary for her.  Something that has been a goal of mine for her.  She went out to do something in the community without her wheelchair, without being carried...she went to a movie using only her walker!  I know the irony of a wheelchair-using mom having the closely held goal of her child walking, but you have to remember that I was able to walk from about age 2 to 7 with a brace and then from age 8 to 17 with a prosthesis.  I know the freedom that being able to stand and walk without physical assistance will bring to Vanessa.  Our next goal is to go to Wal-Mart with her walker to buy some clothes, but we will probably wait until after the holidays.  She needs more time to build up her endurance and she currently has me worried that she is having some new seizure activity.  Please keep her in your prayers as we get a new EEG after the holidays.  I'm praying that I'm just an overly anxious mom and that she is not having seizures.  She is such an amazing kid!

No comments:

Post a Comment