Want to win a copy of Veronica Janus’s book, Abundantly More? Read this August 22nd article and post a comment. I’ll put your name in a hat and get Nathan to draw the winner on September 5, 2011.
Tags: Abundantly More, Nathan, Veronica Janus
This week, Veronica Janus releases her book, Abundantly More: A Mother Clings to God as Her Infant Clings to Life. “Abundantly More shares my journey of hope and healing,” writes Janus, “and it also offers practical knowledge on how to navigate life in a pediatric ICU.”
I’m not aware of many memoirs written about a family’s struggles with their child’s congenital heart defect. Veronica is painfully familiar with the ups and downs of loving a child with serious medical issues. She shares the following article, “What Now? Finding Support after Discharge” with Nathan’s Prayer:
When you are a part of something long enough, it becomes your normal… even if it is not normal. Being trapped in a pediatric intensive care unit for weeks or months is not normal, but it becomes part of you. After a while it is familiar and perhaps even comfortable. It is the only world you know. You are forced to live in it and its boundaries.
Eventually you leave the ICU, hopefully with a cured and healthy child. You go home to what used to be your normal, but has now become foreign territory. So you are forced to adjust quickly—again. There are no more nurses caring for your child around the clock. You are now the nurse. There are no more doctors visiting several times a day, diagnosing and observing. You now play that role. There is no one to administer medication, feed your child, change your child, and do their laundry on a daily basis. You now do it all. It can be scary, lonely, and you may feel deserted.
You are not alone. For every childhood illness, disease, or syndrome there is most likely a support group. While we were still in the hospital with our son, who was born with Congenital Heart Defects (CHD), a mom whose son also had CHD, told me about a support group. I did not pay much attention to this information at the time because I did not know when or if my son would make it out of the hospital. But today I feel fortunate to be a part of Mended Little Hearts and share our lives with other CHD families. Mended Little Hearts is a national organization that partners with hospitals to “…connect families in crisis with other parents who have survived the shock of learning a child has a heart problem, navigated the maze of medical decisions and procedures, and mapped out a plan for the future.” (http://mendedlittlehearts.wordpress.com/)
A few weeks ago several Mended Little Hearts families in the Chicago land area came together to celebrate our heart babies during the Valentine’s holiday. It was so special to see these little miracles run around and play like other healthy kids. It is a privilege to be a part of a group like this where there is opportunity for support, friendships, education, volunteering, and fundraising.
If you are a part of a support group please share with us your story! You are welcome to share pictures, links, or any other information that could help others, just use your discretion and respect privacy. Thank you!
Veronica Janus is a mother, writer, and the founder of Forever Moments, an organization that gives families with babies in the ICU hope and joy through photography (2009-2011). The author was born and raised in Sweden and moved to the United States to pursue undergraduate and graduate work. She holds an MA in Theater and Communications and a MEd in English. Veronica lives in Chicago with her husband and three young children.
Want to win a copy of Veronica’s book? Post a comment. I’ll put your name in a hat and get Nathan to draw the winner on September 5, 2011.
Tags: Abundantly More, congenital birth defect, heart, Nathan's Prayer, Veronica Janus
Angela writes:
Our beautiful daughter Callie was adopted from China almost two months ago. She was diagnosed last week with Scimitar syndrome and we are in the process of making decisions on how best to proceed. The doctors are not in agreement at this point on whether or not to go ahead with surgery or postpone it and monitor her closely. At this point we are still uncertain as to whether the benefits outweigh the risks. Please pray for us as we make some crucial decisions within the next few weeks.
Prayers for clarity and peace as you consider options.
Read about this family’s wonderful adoption story at www.myadoptionwebsite.com/callyn, and don’t forget to sign their guestbook.
Tags: prayer, Scimitar Syndrome
My friend, Bob Lopez, a chaplain at a hospital in New York, requests prayer for a little baby girl named Georgia. “She recently had major heart surgery,” Bob reports. “She has an ongoing heart condition, but she is very strong, and her family has much faith.”
Prayers to Georgia and her family!
Tags: heart surgery, prayer
I received a lovely email from Samantha (“Sam”) whose son, Lucas, has a rare congenital heart defect called Truncus Arteriosus. Lucas is almost 3 years old–such an adorable age. On the 17th, he will undergo his second open heart surgery. “We are a Filipino family,” Sam writes, “and surgery will take place in Singapore.”
Like so many congenital heart defects, the prognosis for Truncus Arteriosus has improved greatly over the past 20 years. What a blessing that we live in a time of great medical advances! When I pray for the little patients I learn about through this website, I try to ask God to give great insight and skill to the surgeons as well.
“I have always believed in the power of prayer,” Sam writes, “and I hope that you could add us to your prayer list.” Absolutely! Let’s remember little Lucas and his family in these days leading up to Wednesday, August 17.
Tags: congenital heart defect, Congenital Heart Defects, heart surgery, open heart surgery, prayer, truncus arteriosus
