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May 19-25

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Hi everyone who might read this - thank you...very truly thank you.
Today marks the 1 year anniversary from when we got the initial "probable diagnosis" of Trisomy 18 for Philip.  A year ago today our lives were forever rocked.  A year ago today was the worst day of our lives, but many far more worse were to follow. 
It has now been nearly 8 months since holding him in our arms and trusting him into Jesus' loving arms.  We have had countless moments of grief - a wonderful woman started using her own word "grief-lets" and I am stealing it because it is so perfect... so thank you Carla for sharing your story and letting me steal the perfect word for those moments.  The moments of grief that wash over a mundane task and know that for us it is not how it is supposed to be - that my nearly 8 month old should be sitting on my lap hindering me from folding laundry instead of me not being interrupted.  The grief-let of saying "all of my little men" knowing that I will forever know one is missing from the group.  The grief-let when someone asks about my kids and I second guess myself when I say we have 2 (with us).  The grief-lets when I wonder how Jed and Zeke would play differently with Philip around.  The times when Jed asks what Philip is doing in heaven right now and makes up something beautiful of how Philip and Jesus must be playing (my favorite is when they were making snow angels).  There have been so many grief-lets that are more than I can count.  These moments often pass quickly because I seem to not be able to sit in my grief.  For the most part that has been a blessing- Jed and Zeke push me to function beyond the grief that we feel. 

Before this part in our journey I had experienced loss and grief of another kind, real and powerful, personality and character shaping, but different.  I never could have imagined a loss and grief like this.  One that touches me every single day with it's scorching fire of pain and agony.  This grief even many months from when Philip died in our arms is still quite raw and just below the surface, easy to "ignore" in many situations, but always there.  Now I have learned and am very much still learning what walking with grief mixed with joy looks like for us.  As a family we will always be one short at the dinner table - we embrace that loss, recognize it and take it along with us as we move forward in our lives.  We have had beautiful moments of joy and laughter (mostly because of Jed) and imagining the beautiful reunion we all will have one day.  Imagining how big and tall Philip is and how strong he must be with his perfected body where the Trisomy 18 is no longer in every cell of his body. 
Pastor Gary Butler has walked with us through this journey and we are deeply grateful.  He is the one who pointed out that joy in grief is good.  God has made us for joy ( I cannot for the life of me remember the scripture references) and for us to wallow in grief and refuse joy is to do a disservice to us as image bearers of God and to the one we have lost.  There have been times and will continue to be times where Dan and I collapse into each others arms and sob our eyes out and that is okay and good to do.  There have been times and are times when we take joy in and delight in the 2 hours he was out of the womb and how he seemed to like to surprise us...  We know we have a long way to go and grow in walking in this mixture of grief and joy in the journey that God has set our steps on.  We know that we are not experts in any way, nor think we are, but I am glad to have 1 year under our belt from the diagnosis.  One year of growing and trusting God as He carries us and never leaves us.
Oh, I just realized something... Philip  has better theology than Dan does - because he has been there and actually can comprehend more than Dan can while here on earth!!  haha!! that's gonna get Dan!  😂  
See.  Grief and Joy - it is a beautiful mixture.

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