Archive for September, 2011

Outpouring of emotion…

The most surprising things seem to bring back so much emotion… I remember going to the doctor’s office once, quite a few years after having Callen and Annabelle, for a regular well visit and they gave me a gown to wear.  The gown smelt like bleach and I started to cry…  the smell of that gown reminded me of the days I gave birth to my kids, having worn those same overly bleached, white with blue and pink print, gowns… the day my life changed and I became a mother… 

When Evelyn got sick my family and friends so graciously came and cleaned my house from top to bottom… and when I say top to bottom… I mean tippidy top to bottom!  Even the books on the book shelves were wiped down!  In all of this cleaning my diaper bag was lost.  I have been unable to find this diaper bag for 6 months!  Today as I changed around some furniture to accommodate for the kids new homeschooling desks I found this diaper bag, stuffed inside the shelf of my desk which had gone unnoticed because the desk and it’s shelves had been put up against a wall…  I set the bag aside, happy that I found it, intent on packing it up and using it tomorrow! 

The night is coming to a close and I picked up the bag to start packing it up… I can barely stop the tears from welling up as I am overfilled with emotion.  I looked at the contents of the bag and it was completely normal things you would expect to see in a diaper bag.  I thought to myself…  the morning I packed this bag, I had no idea my life was about to change.  I had no idea that we would end up at the hospital fighting for Evelyn’s future that night… and that by the time we came home from the hospital as we started our ’new kind of normal’, this onesie would never fit again.  I had packed a small portion of dry oatmeal, expecting her to eat it within days… not months…  I packed her socks, expecting her to start crawling soon, pushing around with her little feet… not realizing that within a day of packing this bag she would stop sitting up… she would stop smiling… for sometime… 

Such an emotional night that I did not expect…  These tears remember the heartache I experienced that night and the days to come… but they are also tears of joy and thanksgiving as I am in complete awe of my precious angel and all the Lord has done in her life and in our family’s life.  Just a matter of months ago, to the doctors, her future looked quite grim and unknown…  Today she stood up in the grass, all of her own strength!   She crawls, she laughs, she babbles…  She will look at each family member by name.  I asked her at dinner time what a doggy says and she let out repeated hmmmm hmmm hmmm…  which is what she says when she sees a dog bark! 

Just as my life changed the day I packed that diaper bag, so could it change… tomorrow…  All we have is today, and what a reminder to be sure that whatever I do today invests in that which has eternal value! 

Evelyn continues to do wonderfully, her latest EEG was clean again, marking 5 months seizure free!  They reduced her Vigabatrinfrom 5.0 ml in the a.m. and 7.5 ml in the p.m. to 5.0 ml in both the a.m. and p.m.  Her Neurologist in Boston has said that we can begin a slow wean off of Vigabatrin and she is incredibly impressed with the alert, attentive, smart and capable little girl she is becoming!  So we will go to Boston in 6 weeks for another EEG and as long as all is well we will reduce the medications again.  With regards to Evelyn’s other medical battle – Neutropenia, we are seeing great progress!  At one point, when Evie was well, her neutrophil count was around 3,000.  For many months following her third hospitalization, it hovered between 100 and 300.  Back in the middle of July her numbers were 260.  In mid August they were 510!!  And then, on August 25th, they went up to 840!!!  When we hit the 1000 mark Evelyn wouldn’t even officially be considered neutropenic anymore!!!  And, well… as far as Evelyn missing some genes… clearly my God is amazing and she doesn’t need’em!!! 

Callen and Annabelle are in their second week of homeschooling at the school we call “The school of Mom!”  They want us to get T-Shirts that say that – they are so adorable.  Every day we work on the standard subjects, but above all of that we work on character development.  And in this refining of character, in them and in me, great things are going to happen! 

Thank you all for your continued prayers for our family… we are so blessed to be surrounded by such amazing women and men of God!
Blessings,
Jill

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