I’ve said it before, and I’ll say it again. Meeting parents of kids with special needs and hearing their stories is the best part of what I do. Recently, I met Deborah Arrona via the Coffee Klatch, a Twitter community for parents of kids with a wide variety of special needs. Later, she agreed to be interviewed, and her testimony of life with a child who has significant special needs impressed me deeply.
Baby Aria Comes Early
The Arrona’s adventure began in December of 2003 when Deborah was 23 weeks pregnant. Her blood pressure was slightly elevated, and she was spilling protein in her urine. After a hospital stay and a week on medication, her blood pressure improved. But she was still spilling protein, so she went back to the hospital. Deborah’s preeclampsia worsened, and the baby had to be delivered early by C section, at 25 weeks. Aria was born on December 31, 2003 and weighed in at only 1 pound, 4 ounces. She was 11 inches long.
110 Days in NICU
Deborah and her husband Salvador didn’t see their daughter for 5 long days. When they finally did, she was covered with plastic sheets as the medical staff tried to mimic a mother’s womb. Special coverings hid her eyes and ears. Much of what happened during Aria’s early days is still foggy for Deborah. Complications were numerous, procedures constant, and surgeries were required. Deborah does remember that her daughter nearly died of pneumonia once. And they didn’t get to hold her until she was three months old. When Aria’s weight went over 5 pounds and she could to bottle-feed without oxygen, they were able to take her home. She’e been in NICU or 110 days, from December 31, 2003 until April 27, 2004.
Life with Aria
The NICU staff did all they could for Aria, but humans just can’t recreate the sheltering, nurturing environment of a womb. Leaving that environment so early left the little girl with some major special needs. Her vision is impaired, though she can see light and shadow. In 2005, at age 2, a feeding tube was surgically implanted because eating was so much work, she couldn’t get enough nutrition. Aria is confined to a wheelchair, though in physical therapy, she’s been learning to stand. At age 6, she communicates mostly through facial expression, though she babbles a great deal. Aria still wears a diaper, but her parents are working on toilet training. She attends a preschool program for children with disabilities. When she’s home, caring for her is a full time job.
So Young and So Wise
When asked what she’d learned from Aria’s condition, Deborah said, “I’ve learned to slow down and think about what I do and say…I try to get to know medical professionals as people so they will take better care of Aria. I present myself as a mom who’s serious about her care and who can help her. I plan carefully, think of variables first, and then do. I try to be over-prepared.”
Wow! What an example of a wise advocate for a child with special needs. Here’s the kicker, folks. Deborah is only 26 years old. She’s been advocating like this since Aria was born, when Deborah was 20!
How Did It Happen?
If you want to know how Deborah develop such wisdom, come back Wednesday for the second part of this series. In it, Deborah will tell about where they received support and what they are doing to give back. You won’t want to miss it.
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Thank you, Jan. I didn’t know they could sing, too. Aria has wonderful parents, for sure.
Deborah and Salvador are so young, yet so full of wisdom. They are a wonderful example of how all parents should be, whether or not they have a child with special needs. They have to work around feeding schedules, Aria’s illnesses, many sleepless nights, and daily 5:00 a.m. feedings. Yet, through all this, they still find time to volunteer on Wednesdays and Sundays so that other parents of special needs children can find time to spend with the Lord. They are the Directors of a special needs ministry. As a teacher, I have sat in awe at the lessons I have observed and the modifications they have made to meet the needs of the children they serve. I believe God knew what He was doing when he put this family together. Salvador and Deborah have beautiful singing voices. Aria truly loves her mommy and daddy. She yells with excitement and is the loudest when she hears them singing.
Dear Memo and Popo,
How wonderful to meet you. Obviously, Aria is loved by many people and her parents are supported and encouraged, too.
You’re welcome!
Jolene
Dear Jolene,
I also want to thank you. Deborah and Salvador are a great team together. They take care of Aria so well. I pray for the whole family very day. I am Deborah’s mom and I too am so gratedful to my son-in-law Salvador for still supporing his family.His mom and family have a great personal walk with the Lord.
We (Deborah’s family)try to always be there to help them out.Our Aria is so special to us and yes she loves music and for her daddy and mommy to sing brings joy to her.We Thank You
Aria’s memo & popo
Dear Nichole,
Thanks for your tribute to Deborah and Salvador. Though I haven’t met them or Aria in person, the pictures Deborah has sent attest to Aria’s glowing smile. Thank you for being a support to them. Even the best parents need cheerleaders and helping hands.
Jolene
Dear Jolene,
I too am a friend of Deborah’s and I know that she is thrilled that you have chosen to feature her family in your blog. Specifically because she loves sharing Aria’s story and educating as many people as possible about preemies and children with special needs.
Deborah and Salvador are amazing parents. I am in awe of them every day. They go above and beyond to give Aria a wonderful life and provide her with as many opportunities as possible. And as Carrie mentioned above, the proof of their awesome parenting can be found by looking at Aria’s beautiful smile. Although Aria is unable to speak, words are not necessary to see how much she loves her parents and how important they are to her. She literally lights up when she hears them.
Thank you so much for sharing their story with your readers. Deborah and Salvador are fantastic examples of great parenting for everyone with children, not just those with preemies or children with special needs. And Aria is a perfect example of how a child with special needs can flourish beyond medical expectations when provided with parents who push themselves that extra mile for their child.
Dear Carrie,
Thanks for sharing your insights about Deborah and her family. From what you wrote, I think they are blessed to have you as part of their support system. How many hairdressers are as aware of their clients needs and strengths as you, or understand their situation so well? You even know how and why Aria has her name!
What a blessing it has been to get to know Deborah and hear her family’s story. It’s been my pleasure to tell others about their grace and tenacity while parenting their little girl.
Jolene
Hello Jolene,
I am a close friend to Deborah ,Salvador and Aria. I am so delighted that you chose to share their story with your readers. I am constantly impressed by the grace that Deborah and Salvador both have when dealing with all things Aria. The statement Deborah made about thinking ahead is an understatement. She understands that she is in a position to be judged in such a manner that it could potentially have an impact to the level of care that Aria receives. I am the family’s hairstylist and there have been many occasions that Deborah wanted to do something new and funky with her hair but opted out because she didn’t want any of Arias doctors or teachers to pass judgment on her or not take her seriously as Arias care giver. That is such a small example of Deborah’s thoughtfulness when it comes to Aria. She is such a loving and concerned mother and wise beyond her years.
Aria’s name is derived from an “Operatic Aria” meaning a “melody or lyrical song for a solo voice expressing intense emotion”. That’s Aria. She is very beautiful and animated. She LOVES music! Everything that comes from her mouth is drench with some sort of emotion whether it be intense glee or deep sighs of discomfort. She has such a sweet spirit that I sometimes forget that this precious little girl lives with muscle pain that I myself can not imagine. Aria is a great kid and is most certainly one of Gods greatest blessings to her family. She has a smile that stretches from ear to ear. Her happy demeanor is a testament to the exceptional job that Deborah and Salvador are doing. Thank you so much for featuring the Arrona family in your blog. You couldn’t have chosen a better couple to highlight. God Bless you and the work you are doing.
Cordially,
Carrie Hatley