Time for the next question: daily suffering and pain, watching your children suffer and being powerless to take it away?
I don’t really have a good answer for this one. To be completely honest, I am not a super sensitive mom. This is probably God’s blessing on me. I am sad that Bentley and Marseille have to walk through this but I really don’t think a lot about them suffering or taking it away. I am not trying to be flippant, or uncaring, I really just don’t think about it. Besides giving my children a lot of medicine each day, I really don’t view them or treat them differently. They appear normal and we live each day as I think most normal families do. I don’t dwell on why God has chosen this path for them, and I hope that because I don’t question, they won’t question it either. If anything, I pray that this disease causes them to cling to God quicker than most.
Would I love for them not to suffer? Um, definitely yes! Would I love for them to be healed? I pray for it daily. If I could take it away I would, but I can’t and no amount of worrying or questioning is going to take it away. God has chosen to bless us with this disease, and I am not saying that sarcastically. I think Laura Story says it wonderfully:
‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise
~Blessings by Laura Story
I don’t know if this makes any sense! I love my children but God loves them more, more than I ever can or could. I learned from the minute, literally, that Bentley was born that my children are not mine. I have to trust God completely that He knows what is best for Bentley and Marseille and if ARPKD is what is best right now…. bring it! When Danny and I are discouraged in our situation we always come back to the same thing: it could always be worse.
xo, nikki :)