20 May 2015

Ichthyosis Awareness Month: Daniel's adoption story.

Little Daniel has Harlequin Ichthyosis. When he was born, his birth mother grieved over giving birth to another child affected by Ichthyosis. Daniel's doctors were doing the best they could to save his life, and to find him a family who could care for him. Nicole and Mark gave Daniel a new chance at life. They were willing to help him, despite knowing very little about Ichthyosis. Read their adoption story. It's so beautiful. 

They have received some wonderful support from adults and facilities affected by Ichthyosis.

Meet Daniel and his parents Nicole and Mark. Two amazing people who has given a little boy the best chance at life.

"Before we even knew he existed, there was…

-a newborn baby boy in California, named only “Baby Boy Z”, struggling to survive the first days of life with harlequin ichthyosis.

-a mother, overwhelmed with pain and grief as she recalled her daughter, born many years ago in China, who lived only a few difficult days, thinking, “Why is this happening again?”

-a father, halfway around the world in his home country, unable to comfort his grieving wife, unable to hold his newborn son.

-a medical team, working around the clock to help this baby boy survive, feeding him, treating him with aggressive antibiotics when sepsis made his prospects look dim.

-a hospital social worker, realizing that this baby will need a new family (if he survives the first few weeks), but doubtful that such a family can be found. She feared he would live, and die, in the foster care system.

-And there was Mark and me, across the country in Pennsylvania, recently finished with our mountains of special needs adoption paperwork, clueless that our son (our SON!!) had been born. Then one day we saw a Facebook post about a baby with harlequin ichthyosis who needed a forever family, we researched the condition, we prayed for wisdom, and we sent over our home study packet. A few days later, as Mark and I were jumping around singing silly Bible School songs for a roomful of hyper children, his cell phone was lighting up with calls from California. I was on a plane to Los Angeles 18 hours later.

On Baby Boy Z’s one-month birthday, after a harrowing rush-hour cab ride from the airport, I walked nervously down the hospital hallway, bursting with excitement at the thought of meeting my new son. I heard little whispers of, “She’s here! The mom from Pennsylvania…she’s here!” as I passed the nurses’ station. Someone told me to don a gown and gloves, and I smiled awkwardly at the two Chinese ladies in the hospital room, wondering which one was my son’s first mom. I peered over the edge of the hospital crib and cried as I took in my beautiful baby boy dressed only in a diaper. He was covered in dark patches of thick skin, sleeping with his eyes open, and he was making those familiar baby squeaks as he stretched. Over the next week, I sat in on all the “rounds”, learned about his medical care, signed several stacks of paperwork, and began the process of bonding with my baby boy. We decided on his name and the nurse changed the nametag on the crib from “Baby Boy Z…” to “Daniel”. Daniel means “God is my judge”, a sentiment that will be useful for him as he grows up with ichthyosis.
As of this writing, Daniel is a healthy nine-month-old, making strides in his development (rolling over now, and sitting like a pro!) and entertaining us with his cute and silly personality. We have developed a “new normal”, integrating Daniel’s feedings, skin care, and doctor appointments into the family routine. There have been a few hospitalizations, but overall, Daniel is surprisingly healthy. We have been surrounded by love and support from our local medical community, our family, and our church family (who came together to fund Daniel‘s entire adoption!!).

We consider it an honor and a privilege to have been chosen for Daniel, and we are so grateful that he was chosen for us."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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  1. Wow. I have been told I probably cannot have children, and have thought much about adoption later on, and adopting a child with illness and disabilities. This gives me hope. More importantly, this piece gives me hope that the world can be a wonderful place sometimes. I am not a person of faith, but the meaning behind Daniel's name made my heart swell. Daniel is beautiful, and so is his forever family x

  2. I am so happy for Daniel and his family! He has such a sweet smile.

  3. I love this story!! And the meaning of his name? Perfect! This little guy is immeasurably blessed :)


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