Anxiously waiting..

Two days ago I received a note from the state saying that Juliana’s genetic testing needed to be repeated immediately. My heart leapt and sank at the same time - I was hoping maybe we would start to get some answers about what happened to our sweet Juliana. I called the state right away, told them what happened, and asked what they found & were hoping to confirm.

Unfortunately, the reason we received the letter was that the sample was unacceptable for testing, so the state had no answers for me. The RN that answered the phone was extremely apologetic, because she said given the circumstances, we should have never received the letter.

According to Dr. Dewitt at CHOP, the sample was unacceptable because Juliana was on TPN, so we wouldn’t have been able to get conclusive results while she was being treated.  He also stated that none of the conditions on the state screen panel would have caused the low blood oxygen that ultimately lead to Juliana’s passing. We are still anxiously waiting for the results of the lung autopsy, which will hopefully give us the answers we long for.

Unfortunately, the state sent the pediatrician the same letter that they sent us, so I received a call yesterday from someone at the office, hoping to put Juliana’s information into the computer.  It was hard to call and tell them what happened, too.

I have been struggling. I know that our little love is at peace & that she is in Heaven with Jesus, but we miss her so much.

One thing that has amazed me throughout this journey is the amount of love & kindness extended to our family by those around us.  You have been an incredible source of support - we have received so many kind messages, cards, & calls. We have been blessed by a multitude of people praying fervently for us.  In addition, the generous donations that our friends and family made allowed us to pay for Juliana’s funeral in full.  Without these contributions, we definitely would have had to set up a payment plan. Thank you SO much. We are so grateful for each and every one of you.

I should also mention that the Heintzelman Funeral Home charged us next to nothing for their services & the owner, Robert, took care of all of the funeral details for us.  Almost all of our costs were from the cemetery.  We are incredibly grateful for Robert & all of his staff at Heintzelman.

I emailed Sisters-By-Heart last week to tell them what happened & they sent us a lovely card with some forget-me-not flower seeds.  I have also been in touch with Stacey, the “angel coordinator,” from Mended Little Hearts Philadelphia region.  She sent us a lovely care package filled with sweet gifts to remember our Juliana.

Yesterday, after going to put new flowers at Juliana’s grave, I went to Office Depot to fax some information that was needed to add her to my health insurance. The woman at the check out noticed how frazzled I was and asked if I was alright. It’s nice to see such care and concern from a total stranger... & we have experienced so much of that since our little love was born.  It’s such a blessing to see goodness and love everywhere during some of our darkest hours. I believe it’s God’s way of saying, “I’m still here. I still have you.”

It would be disingenuous for me to say that I haven’t struggled with my faith since losing Juliana.  We believed so strongly that she would be healed & the magnitude of the loss really threw me for a loop. We are praying for God’s comfort, healing, and guidance during this time.  I have also been praying that God will show us His will for our lives going forward...

And I have drawn some strength from the blog of a family that I don’t know, but many of my friends do; a family that lost their own two year-old daughter, Hannah, to brain cancer two years ago.  Aaron was a physician in the Emergency Department that moved his family to Kenya to serve as missionaries just before I started working there. Though we never met, I prayed for this family two years ago & was reminded of his blog after Juliana went home to Heaven.

Here are some of Aaron’s words that I’ve found comforting:

“So many people have said that they are amazed, impressed, overwhelmed by me and the way I am handling everything. Don’t be. Be amazed that the God who created the world desires to know us and be with us. Be impressed that no matter the situation, He has offered to carry us through. Be overwhelmed that He was willing to sacrifice His Son in our place offering the free gift of salvation to anyone who will simply believe and place their trust in Him.” (whole post here)

Thank you to the Aaron & the whole Kelley family for being a light in the darkness. 

& Thank you all for your continued support, love, thoughts and prayers. Love to all of you & your families.