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Livia’s 3rd Birthday

Livia’s 3rd Birthday

February 19, 2010March 26, 2016 stefanieboyce

Birthdays hold new meaning in the Sanfilippo world and we wouldn’t have missed Livia’s birthday! Happy Birthday sweet, precious, princess!

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This is war! 🐿
Waiting.... #advent
A few months ago, I mentioned I had big news...well, this is it! I completed training to become a parent liaison with the palliative/hospice pediatric team at JourneyCare. Today was my first meeting to discuss how I can come alongside the team supporting families and educating the community about palliative/hospice service. To most people, those are really scary words “palliative/hospice,” especially when you put the word “pediatrics” anywhere near them. Which is why I knew I wanted to be a part of changing that perception. As a family that had services for over four years, I just knew that I wanted to support families anyway I can. We are so thankful for the team that helped us-the team that advocated for us with our hospital team, got medication and diapers delivered right to our door, helped us get a bath chair, and even supported Ellie with child life therapists. The team that drove countless hours to check on the kids, helped me process countless decisions over the phone, and occasionally had to talk me off the ledge. The team that attempted art projects, made beautiful keepsakes with J and B, and got even a massage therapist to come out (for the kids-not me, dang it). Not to mention the team that helped us walk J and B home. A team of nurses, doctors, volunteers, chaplains, massage therapists, child-life therapists, social workers, 24/7 on-call nursing assistants, medication delivery people, CNA’s, and even bereavement camp counselors. The biggest misconception is that pediatric palliative care is only for the last few days before the patient passes and that is far from true. It’s about helping families and kids live well, every day we get. I am so thankful I had years to establish a supportive team that knew my kids, so when the changes did come or I needed a doctor to call the hospital on my behalf, I had that support. I know every experience is different, but for our family, this was such a blessing. I am so thankful for JourneyCare and I can’t wait to work with the team and support families in this capacity. #jbthankful #circleback #journeycare #bealightinthedarkness #illbetheblessedone
This has long been one of the best pieces of advice when it comes to the aftermath of grief for me. Just one step at a time. Wanted to share as a reminder for us all, especially on those days it doesn’t seem like the steps matter. They do. Keep going. 💕
4 months closer, B. I miss you so. We all do.
It is with a heavy heart I search for words. I am heartbroken for my friends Matt and Shannon. I am rejoicing for Oliver who, as of this morning, is home, restored, and free. With Jesus. With his sister. With his friends. With J and B. I am thankful I can be just one face in a sea of such a beautiful community of people that are walking with them. I am thankful for the time I spent a few months ago with Oliver and Shannon in DC. Thankful I got to know Oliver’s easy, unassuming way. The way his one toe rose up over all the others or how his feet danced in striped socks to Mickey Mouse Clubhouse, and every so often, his left hand would reach for the door handle. I am thankful to see him three years ago, rump up in the air, sleeping in his matching jammies. For the way his legs crossed in his seat, his bow ties, and his “pipe.” Thankful for the lap we did, holding hands, around my house one summer. Thankful to see him ride a trike. Thankful for all the things he taught his mom, so she could teach me. As I weep, I am thankful. Shannon and Matt, thank you for sharing your son, your heart, your suffering, and your unwavering love for your children with the world. #jbthankful
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