The Story of My April Butterfly: April 2010

Tuesday, April 27, 2010

Would it be easier?

If you were diagnosed with something specific...

would it make life easier?

If I knew exactly what causes you trouble and delay...
would it make life easier?
If I could read a book, or search the Internet with specifics...
would it make life easier?

Sometimes I wish I could label you.

Not because I want to, but because it would be easier
to explain you and understand your life.

But then I think about how God wants to use you in this life. HE wants to be given the Glory for your successes.... HE wants to be consulted first when we feel concerned for your future... and HE wants us to remember that He gave you to us for a purpose.

No label will change our love for you. No label will change our desire to help you in every way possible. And no label will allow us to grow closer to God.

Your life, baby doll, is what brings me to my knees more often than anything else in my life. And I praise God in this storm because I know He loves you more than I ever could-
and that love must be VERY BIG!!!

Happy 5th Birthday, Maggie!

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Maggie spent the first three weeks of her life in the NICU... first to investigate an irregular heartbeat- cleared with a diagnosis of a wandering pace-maker and sent home at 5 days old. She stopped breathing 2 hours after we had been home... we gave her rescue breaths, called 9-1-1 and Maggie was transfered by ambulance to the NICU, again. At 20 days old Maggie was sent home with a diagnosis of mild Laryngomalasia (floppy windpipe) and an apnea monitor to wear for 6 months. At one year of age Maggie was diagnosed as Hypotonic and spent the next 6 months of her life being seen by a Neurologist, a Genetic Counselor and Occupational Therapists. She began early intervention for her developmental delays. At age 3 she began attending a Special Education Preschool. She attended a typical Kindergarten class with RSP help for fine motor delays. Beginning in 1st grade she began her journey through Special Education for intensive help with many developmental and cognitive delays. Beginning in 3rd Grade I decided to Homeschool Maggie through a local charter school. She still received Special Ed. services, but I was in charge of her daily curriculum. We began her 5th grade year by enrolling her back in public school. This year will either prove to be a great stepping stone to the rest of her education, or it will be a year to revisit other options. This is our journey living with a child who is Hypotonic.