Hello!  This is Heather Danielle's mother, Eden.  I hope this finds y'all well!  We are doing fairly okay, meaning Morris (my husband), our daughter, Heather Danielle (she's thirteen), and myself.  We have our good days as well as our bad days.  We have to take it one day at a time and pray that God allows our daughter to live another day.

You see, our daughter is severely disabled.  She cannot walk, talk, feed herself, or go to the restroom without help. She was born seemingly healthy, but at about the age of one and a half, she was diagnosed with a rare genetic disorder (muco poly sacchiadosis) which is fairly seen in Jewish people.  We had the defective gene, and we passed it on to our daughter.  We felt horribly guilty at first, but we've since learned to accept it and we will do everything humanly possible to help our daughter enjoy what is left of her life.

At the age of five, Heather lost all of her ability to walk.  She now uses a wheelchair.  At eight, she started having her first seizures; now at the age of thirteen, she has anywhere from 20-50 a day.  We have to constantly keep her medicated, or else she could have more and possibly end up becoming more brain damaged than she already is now.  It is a Catch-22 situation.

In addition to all of this, Heather also has breathing issues.  She has to have breathing treatments three times a day and at night she has to wear oxygen; seems the worst of her breathing problems occur at night, when she is sleeping.  More than once we've been awakened by the alarms squealing; it's a horrible thing to have to endure!

If we didn't carry the defective gene that caused our daughter to have problems, we would have had more children.  We would love to adopt, but with Heather's health, we need all the time with her while she is still alive.  We want to be there for her and help her as much as we can.

Today, Morris and I are taking Haether to the park, so she can enjoy the nice weather we are currently having.  She loves to get out in the sunshine and feel the warmth on her skin.  She also loves to swing on the swing and feel the wind rushing past her face and in her ears; that is probably one of her very favorite activities to engage in.  She also loves it when people talk to her or sing or read to her.  She might not communicate with speech, but our daughter is very good at letting her emotions/wants/needs known. 

As I told you in the first part of our story, Heather is very smart.  We are very proud of her.  Right now at school she is on the AB honor roll.  Eventually she will lose her ability to learn, but for now we want to help nurture her young mind as much as possible.

Heather is in the seventh grade; she is mainstremed into regular classes, where she has an aide help her with her lessons.  She has many friends, and the kids have learned much about accepting people who are different and are more than willing to play with her or be friends with her.

Well, Heather wants something: she is grunting again; it's her way of getting our attention.  I will have to go.  I will write again soon; until then, this is Eden Rankowsky signing off!  Take care!

~Love, your friend in Canada, Eden.  :)

*to be continued.*