December 2023 Special Needs Living Magazine

When the Joy A Child Brings Always Outweighs The Struggles Introducing You To Ava West-Mullen

BY ANDREA HURR • PHOTOS BY JULIAN CURET

Keeping God at the center of their lives, Lisa West is a force to be reckoned with when it comes to her special needs daughter Ava West-Mullen. While pregnant with Ava and her identical twin sister Abigail, Lisa and her husband Jon felt pressured to do a selective reduction with doctors suggesting that they should focus on “the healthy twin” as Ava appeared not compatible with life. They obviously did not choose to go that route and Lisa says that they “have always been adamant that though the doctors may have one plan for Ava’s life, we know that the plan God has for her life has been so much greater from the very moment He placed her and her twin sister in the womb!!!” “Keeping God at the center of our lives and continuing to remind ourselves that he is the author of Ava’s story has been the best way to keep the faith and stay positive throughout all of Ava’s struggles.” And struggles they have had.

Born at 34 weeks, due to full placenta abruption, with profound microcephaly with a simplified gyral pattern (her head and brain are extremely small and her brain does not have the wrinkles in it like a typical brain) and optic nerve hypoplasia (extremely small optic nerves in her eyes) they discovered years later through genetic testing that Ava has an extremely rare disorder of the MCPH1 gene which is the root cause of her medical complexities. On top of all that, shortly after birth, she was diagnosed with a heart condition called VSD which has thankfully completely resolved itself and then at age 2, she was diagnosed with spastic diplegia cerebral palsy. Her SDCP affects her gait, motor planning skills, and physical stamina.

Ava and Abigail are now 7, in first grade, and thriving in their own ways. The twins have 5 more siblings and a niece and nephew. Lisa says to watch Ava interact with her 6 siblings and nephew and niece “is truly to witness magic in the making. The amount of growth, patience, and love that our older children have gained since Ava’s birth has been incredible to see. They truly all are “their sister’s keeper”.” Ava also has an incredible bond with her twin which Lisa describes as “supernatural” and “unexplainably special”. The girls are inseparable and best friends. “What one lacks, the other one doesn’t miss a beat in picking up on,” says Lisa.

The West-Mullen family has been a part of a local support group in Plain Township which now keeps in touch through social media since Covid. Lisa stresses that having other parents who understand the hard moments and are there to celebrate the good ones has been a “defining factor in the success of parenting a medically complex child.”

Lisa also keeps a Facebook page called Micro Miracle Ava where she posts updates on Ava, shares her thoughts, and struggles, and keeps information handy on microcephaly. Ava receives therapies through Wings of Change Therapy, Inc. in Cuyahoga Falls where she works with a speech pathologist and occupational and physical therapists. Daisy and Waffles, the therapy dogs there offer a lot of motivation to Ava and Lisa says her skills have grown by leaps and bounds since starting there! They credit her school, OHDELA, which is an online school for a lot of her success too. Even though it is online schooling, her services and accommodations have been “top-notch” and she receives part of her education with typical peers and the other part of her day is in small groups and one-on-one live class sessions with her intervention specialist.

Lisa can’t praise OHDELA enough saying that it has been an amazing blessing for their family and everyone there goes above and beyond for Ava. In fact, Ava’s intervention specialists Amy Hostetler & Kersti Carmichael are two very important people in Ava’s life that Lisa admires and appreciates so much as they have worked patiently with Ava since kindergarten and have never once got discouraged or frustrated with her daughter. She goes on to say that Amy and Kristi are Ava’s biggest cheerleaders and number one fans who often go the extra mile by providing materials for them at home to use so Ava can reach her full potential. When asked what is something you would like parents and families in the local special needs community to know, Lisa says; “For families of newly diagnosed babies/ children, celebrate everything! Do not focus on milestones or typical development with your medically complex child. Celebrate “inch stones” and realize that every second your child is with you is a gift from God! Do not be afraid when the doctors put limitations on your child’s life and tell you what they may not be able to do! Your child will continue to surprise you as they grow. It’s not a bad thing to do things differently, and doing those things differently does not make your child “less than”. Allow yourself to grieve the life that you thought your child would have and then pick yourself back up and enjoy the life that you have been blessed with!!! She also says “Ava has brought me to my knees in prayer and brought me to my feet in celebration more times than I can count. The joy that Ava brings to our lives outweighs the struggles 100 times over.”