Connections: The McGee-Leavitt Family

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Hannah McGee and Andrew Leavitt are the loving parents to their son, Jackson. Jackson was born 10 weeks early weighing one pound 10 ounces. He spent 115 days in the NICU and the following year, he was in and out of the pediatric floor. He has a variety of complex health conditions due to his premature birth including: spastic quad cerebral palsy; epilepsy; hearing loss; cortical visual impairment; is on home oxygen for a chronic lung condition; a heart defect; and is fed via a G-J tube.

Jackson is two-years old and currently enjoys playing with his toys, going to the camp, swimming, doing arts and crafts, and going for drives in the truck. Everything he does is shared and supported by family.

We recently had the opportunity to interview Hannah, and get to know the McGee-Leavitt family!


NAVICARE/SOINSNAVI: What does “self-care” mean to you?
 

HANNAH: Self-care means having the ability to take care of ones self so that you have the ability to provide care to others.


NAVICARE/SOINSNAVI: What makes having a child with complex health conditions special? How has that strengthened your family?

HANNAH: You enjoy every little thing. You no longer take things for granted, even the simple act of opening and closing a hand is a miracle in its self. This has strengthened our family by providing immense amounts of joy at every little accomplishment, milestones, and Jackson's smile!


My advice is to believe in yourself. You can and will get through even the hardest of days. Celebrate the small things. Smile, laugh, and let your child know you love them each and every day. Provide them opportunities to exceed expectations. Ask for help and support. Research. Find the strength to be your child’s advocate, if you don’t agree with something or someone regarding your child’s care, let them know. If you have an idea or suggestion, bring it forward. This will only benefit your child in the long term.
— HANNAH

NAVICARE/SOINSNAVI: What are some of the challenges or barriers you have faced caring for your child?

HANNAH:

  • I never knew the world of special needs children existed. I was oblivious to it. This has been a challenge for me and our family. I now feel like I am a nurse, dietician, pharmacists, and therapist on a daily basis.
  • Learning that doctors don’t know all the answers. Jackson has exceeded all of the expectations the doctors set for him.
  • Finding therapists who have the same mindset as me - that Jackson can and will do things. Some people automatically assume he won’t be able to do anything based on his diagnosis and that can be frustrating.
  • Not finding programs soon enough, that would/will benefits Jackson.
  • Realizing that I will not be able to return full time to my previous job. Jackson is now my fulltime job, as he is unable to go to daycare and has multiple appointments on a daily basis throughout the week. This makes going back to work unrealistic. This was an adjustment as I loved my job.


NAVICARE/SOINSNAVI: What could have made it easier to overcome these barriers or challenges?

HANNAH: More knowledge in general.


NAVICARE/SOINSNAVI: What does NaviCare/SoinsNavi mean to you?

HANNAH: NaviCare has been a great support. I know that if I have a question or am looking for more information, I can reach out for help and guidance.