A significant day.
Not just “another” birthday.
When Taylor was given a diagnosis of MPSIIIB (mucopolysaccharidosis), with that diagnosis came a number to beat.
The average life span is 10-15 years.
Wikipedia labels it:
Death by the second decade.
So what do you do when your daughter has been given this label?
and the conclusion we’ve come to:
In all practicality, the answer to living with MPS is complex, complicated, and varied depending on the type and stage.
However, our family adopted a way of living:
Live each and every day to the fullest, with joy in our hearts for the present gift from above.
The victory of celebration for Taylor’s life of 15 years is ginormous because with the significance of this day, we recognize:
Life cannot be labeled.
The truth is that NONE of us know how long we have to live; the number of days is not important.
Living with God’s love and joy is.
Psalm 90:12, KJV, states:
So teach us to number our days, that we may apply our hearts unto wisdom.
The verse is not advising us to count the number of days we have lived or have left on this earth. It is reminding us of the more important part of life.
Applying our hearts to wisdom.
The New Living Translation of Psalm 90:12 gives us another perspective of the meaning:
Teach us to realize the brevity of life, so that we may grow in wisdom.
My dear Taylor:
While your little diseased mind cannot grasp the swell of pride in my heart for your tenacity and zeal for life itself, many people in this world admire your vigor. Your life is a beautiful example of how God works in mysterious ways that are beyond human comprehension. I love you more with each day He allows your spirit and soul to be in my earthly presence. And I praise Him for sending you to me, for without you, I would not have a close relationship with Him. Looking forward to the day when your frail mind and body will be made whole and your suffering is over.
Happy Birthday, my Taylor. You are such a gift.