Name: Danielle Smiley
Location: Alabama, United States
Child's Birth Year: 2016
Keywords: Foster Care & Adoption, Single Parent, Seizures/Epilepsy, Cerebral Palsy
Danielle is from Alabama and has always had a heart for caring for children who come from hard places. Growing up, she knew that foster care and adoption were things she wanted to become personally involved in. Only a week after she finished her courses and became a licensed foster parent, Danielle received a phone call from an adoption agency she had worked closely with in the past through her role as an outreach and community service program and project manager. They explained to her that there was a three-week-old baby, Marty, all alone in the NICU, whose private adoption fell through due to his medical status. He needed a parent-like presence in his life to visit him daily to show him love and care. Because the agency knew Danielle and her compassionate and kind nature, they asked if she would be willing to serve as that advocate and supporter for Marty. Danielle didn’t have any experience taking care of a medically complex child, so this was all going to be new territory for her. But knowing that no baby should ever have to endure so much pain without anyone by their side, Danielle agreed to take this leap of faith.
When Danielle first went to the NICU, she had no idea what she was walking into. She was informed that Marty had suffered an HIE event at birth, although there were many unknowns surrounding the exact cause. His injury was severe, and, even though the doctors hadn’t expected him to make it past the first seventy-two hours of his life, he showed inexplicable resilience. At three weeks old, he was still hanging in there, but each day was really a “wait and see.”
Once Danielle started going to the NICU every day—her mother soon started coming along as well—seeing Marty became the highlight of her day. Being able to talk to Marty, hold him, pray over him, and give him the care she wished he had received from day one of his life, was truly a blessing. Danielle was so grateful that, although she wasn’t biologically related to Marty, the hospital staff treated her like Marty’s mother. She was included in basically all aspects of Marty’s care, allowed to go to all his therapy sessions, and contacted whenever there were updates with his condition.
After Marty was discharged from the NICU, figuring out how to navigate this unfamiliar life was challenging. Danielle found out that Marty’s projected life expectancy was only six months, but she realized that she was chosen to be Marty’s mama for a reason—because she had so much love to give. Even though she didn’t know how long she would have with her brave boy, Danielle decided that she was going to take it one day at a time and enjoy the moments she did have with him. For however long Marty fought, Danielle would be there fighting alongside him. This journey has been filled with many ups and downs, but Danielle’s philosophy has very much been to roll with the punches, to adapt to an ever-changing version of “normal,” and to continue to find goodness in all the little things.
For the first year of Marty’s life, he was actually doing really well cognitively, and Danielle had hope that he would meet many of his milestones. But in yet another curveball thrown their way, Marty developed infantile spasms (IS) at just over a year old. For the next ten months, his IS was wrongly diagnosed, so Marty was suffering with all the effects from the damage without being properly treated. It wasn’t until Marty finally switched to a different pediatric epileptologist and neurologist that he was properly diagnosed and given the right medication to control the seizures. On top of regressing greatly in terms of cognition, Marty ended up developing another form of epilepsy called Lennox-Gastaut syndrome due to the IS.
Now, Marty falls under the umbrella of severe HIE outcomes. He is nonverbal, nonmobile, has a trach, has a G-tube, and has cerebral palsy, along with other diagnoses. Still, he is just trying to live his best life. Since those NICU days, Danielle has formally adopted Marty. Even though Danielle is a single mother, and even though it’s a hard journey, she is so grateful for all the support she has received. Danielle’s mother is a huge help in taking care of Marty, and Marty has a wonderful team of outpatient therapists.
The lifestyle of a single parent of a child with severe disabilities can be extremely isolating. Danielle has noticed that some of her friends inadvertently distanced themselves from her after Marty came into her life, often because they weren’t sure how to appropriately respond or show support. So, when Danielle was directed to Hope for HIE by a mother from a local support group she attended, she felt comforted knowing she wasn’t actually alone. Through reading the stories of others in similar situations, and connecting with fellow HIE parents, Danielle realized there was a whole world of people out there who understood what she was going through. Since joining the Hope for HIE Facebook group, Danielle now tries to also share the knowledge and wisdom she has gained from her own experiences with other parents.
In his lifetime, many people have written Marty off or shoved him to the sidelines, whether medical professionals or the couple who was originally supposed to adopt him. But, as Marty’s mother, Danielle lives by the mantra “Until…” She will continue to fight for him and push forward until Marty lets her know it’s his time to go. She will be led by love, hope, and irrevocable faith in her resilient boy until her very last breath. And, for Danielle, being led by hope is not some impossible task, for Marty is truly the most tenacious little person she has ever had the privilege to know. Despite everything he has gone through—from being alone for the first three weeks of his life to infantile spasms to all his medical diagnoses—he is so filled with peace and joy.
Danielle considers herself a better person for knowing Marty. He has shown her that, even if a picture doesn’t look how people think it should look, that does not mean it isn’t beautiful. He has shown her that strength is immeasurable and often comes in the form of tiny packages. He has magnified so many beliefs that Danielle held beforehand, such as the belief in the unseen or the belief that, in the face of adversity, we often find out we’re more resilient than we previously gave ourselves credit for.
Danielle would remind medical providers who interact with HIE families that they took an oath to first do no harm. To fulfill this oath, she urges them to remember that, even if a child’s prognosis looks as grim as it can get, they shouldn’t be tossed aside or called untreatable. Because every situation is unique, it has the potential to be different, or to be more than something seen before. If a family wants to stand and fight, providers should fight alongside them. If a family wants to hope, then give them the encouragement to do so. Nothing should ever supersede that oath to do no harm.
Danielle knows that transitioning to this completely unexpected life is entirely overwhelming. Becoming a parent is a huge change in and of itself, but becoming a parent to a medically complex child is an inexplicably colossal, life-altering shift. Despite all these drastic changes, Danielle would emphasize to other HIE parents to believe in your child above anything else, for you know your child best. Believe in yourself and your ability to adapt to the constantly fluctuating circumstances. Don’t be afraid to trust your gut and trust your heart when it comes to your child, for you truly are their number one advocate.
As a single parent, this transition for Danielle was even more daunting. But she has learned that, while she may not have a partner or spouse, she is strong and fully equipped. Danielle would tell other single parents to believe in themselves and walk tall in the fact that they can push forward against all the obstacles they will inevitably encounter. She would also say that, in those moments where the weight of everything just feels too heavy, don’t be afraid to reach out for help. It may seem like you’re alone at times, but you can always find communities of support. Danielle hopes that, through sharing her story, more people will come to accept that differences are beautiful. Marty doesn’t look or act like the typical five-year-old, but his disabilities do not detract from how much he deserves to be loved and to be included. Of course, for those who aren’t personally impacted, the notion of HIE is unfamiliar. And while the unfamiliar can be scary, it’s also a great opportunity for growth and learning. Perhaps through this education, the unknown can become a little more understood. Perhaps through this education, the world can become a more uplifting place for everyone. Regardless of what others may think, Danielle will forever celebrate and believe that Marty is beautifully made until forever.
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