Heartache

Life with Abby has opened up a whole different world than I ever knew before.  It is sometimes a world of incredible joy and strength, and sometimes of immeasurable heartache and pain.  Along our journey we have become friends with a number of families who each have unique children and needs.  We have met so many friends through Special Needs Groups, Hospital Visits, and even just being out and around.  Sadly kids like Abby don't always get to stay on this earth as long as their loved ones would like.  Since joining this whole new world, we have seen firsthand the pain and sorrow involved in saying goodbye.  I personally truly believe that once these kids are released from the pain and suffering that they experience in these little bodies, that they are probably exuberant and able to do cartwheels and experience an entire variety of sensations, but the trouble is we don't get to experience them the same way.  Phillip once gave me a weekend away from the kids as a gift, I drove up to Maine by myself and spent three days sleeping, reading, and bathing.  I spoke to Aliya on the phone, and was pregnant with Jacob, but I missed Abby's touch.  That is how I communicate with her.  I missed her smell, her smile, but most of all the way she melts in my arms when I hold her.  Right now we are very blessed to have Abby as healthy as she has been, we have spent very little time in the hospital and although life is more difficult without nursing, we are managing.  Unfortunately I know firsthand that there are others who currently are suffering.  


Two years ago during a hospitalization that extended two months, we became closely acquainted with an amazing family.  Their little Eithene has a mitochondrial disease.  She has always processed thought age-appropriately, but is stuck in a body that not only doesn't function, but actually is digressing.  She has spent almost EVERY day of the last two YEARS of her life at Boston Children's Hospital.  Her mom is amazing and Eithene is very rarely left alone.  Eithene has a younger brother and her parents take shifts being at home with him or at the hospital with her, extended family has stepped up, but the wear of the hospital still must take it's toll.  They have fought an amazing fight, but one that can NOT continue.  Tomorrow they are beginning hospice care.  They are having an early 5th birthday for her, and starting the process of letting her go.  If you want to know more about this amazing family and sweet little girl, Eithene's mom has a blog at  fromthebanksofjordan.blogspot.com


I ask that in your prayers you keep this family in mind as their burdens are great, and I am sure they can use all the strength possible.