For one, I just simply couldn't have made it without the love, help, and encouragement from my mom and dad. They have researched PWS, helped us process the information, learned what is best for Ellie, and above all, loved her unconditionally. They have jumped in to raise funds for PWS, and have blown me away with their dedication to the cause.
David's mom and dad, sister, brother and their families have also provided amazing love and support as well. They also, have jumped in fundraising for PWS. We couldn't be more appreciative.
From the moment Ellie was born, we have had support. Calls, cards, flowers, visits, hugs, dinners, texts, emails, visits, and prayers. The love we received during our darkest days is like nothing I can put into words. We spent a month after Ellie was born in a state of fear and confusion, not knowing what test results would show. One thing we knew with certainty, was that Ellie had an army of prayer warriors lifting her up. We felt your prayers, they lifted us up, and carried us through. Thank you....
I can remember getting up they day we drove to Greenwood Genetics Center, having a knot in my stomach. I was so nervous. David had been out to the car and walked in carrying a CD. Our dear friends, Jay and Kristy had made us a CD to listen to on the drive there. It was the most precious act of love and support. The first song on the CD was Laura Story's "Blessings." The song has such dear meaning to me:
We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
Support is crucial in times like this. As we continue on our journey with PWS, support will be even more important. The future is hopeful, but still unknown. I try not to think about it much, if at all. What I've found is that taking one day at a time is all I can do. We thank God for the support we've received and will continue to receive along this journey.
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