Hi My name is Meagan! I am the mother to a beautiful, energetic, strong willed 3 year old little girl and the wife to a hard working hubby! In my spare time I like to train and run races. I love spending time with my little family, extended family and friends. Reese is our only child and an answer to many prayers and is such a blessing in our lives. At 6 months of age Reese was diagnosed with Lebers Congenital Amaurosis, a rare genetic disease that causes severe vision loss and blindness in infants and children. We love riding four wheelers together and love learning new thing daily about how to help Reese with her visual impairment.
Miggy: Can you take me back to the day you knew your daughter would have serious vision loss/blindness? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Meagan: When the doctor took us into the room and told us he needed to talk to us privately it felt like our whole world was crushing in on us. After he told us the diagnosis we went into the recovery room with Reese I fell apart the nurse did not know who she should help more me or Reese. We were in such shock that day that we went home and couldn't even remember the name of the disease she had been diagnosed with. We were at a loss of where to start to help our daughter have the best life possible.
Today we feel so much more hope and have met so many wonderful people throughout the world who have LCA and they lead great lives and have given us so much hope. It is still a huge learning curve everyday for us and our daughter.
Miggy: Explain how Reese’s vision loss affects your day-to-day life?
Meagan: We usually pick Reese’s clothes out for the next day and set them on the dresser for her so she knows exactly where they are, if not she gets frustrated when she can't find the right shoes or shirt because she can't see them. Just this morning she was in her room and I heard her start crying, I went in to see what was wrong and she had lost one of her socks and couldn't find it and it was in the middle of the floor but she had been on her hands and knees searching with her hands and was getting very frustrated she couldn't find it. Also the house has to be cleaned up all the time with no objects on the ground unless I tell Reese they are there and she needs to watch out for them while walking. Reese is constantly bumping into things and tripping but it never gets to her she jumps up and keeps going. Reese has a hard time being entertained she has never watched or listened to TV and she usually only plays with toys if they make lots of noise or have lots of textures on them, except for babies and babies she loves both of them. All of Reese's books have Braille in them and textures which help with stimulation. When we go to a new environment Reese always has her cane with her but still likes to hold hands as it is scary for her to not know her way around.
Miggy: What are the biggest worries you face for Reese ?
Meagan: That she Won't be treated like all other children her age, and that she will feel bad she can't see the things that we see daily.
Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special need situations?
Meagan: I can think of two. First, Reese was walking down the hall at church and a lady said “nice golf club you must like to golf,” thinking she had brought a golf club to church. Also we were at the store one day and the cashier told Reese she needed to put her cane up on the counter so she could ring it up and we could pay for it!
Miggy: How can people best approach or respond to Reese? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Meagan: I would say just approach her like any other child sometimes she knows people by their voices other times it is nice if people tell her who they are.
Miggy: What is the biggest lesson you’ve learned since becoming Reese's mom?
Meagan: I feel like this has been the biggest challenge I have ever faced yet I have received the most blessings from being Reese's mom. I have learned not to judge people at all and treat all people kindly because we all have struggles and challenges and we are all doing the best we can. I have learned that people are so kind, I have watched people interact with Reese and give so much love and service to our family that I am constantly amazed and blessed by the family we have and the wonderful community of friends we have!
Um, did you all just fall in love with Reese? I sure did. I want to thank Meagan for sharing her beautiful Reese with us--what a doll. I love that Meagan said this has been the most challenging, yet the most blessing-filled part of her life. I think a lot of us can related to that challenging/yet blessing filled juxtaposition of life. Thanks again Meagan. Hugs to you and your wonderful family.
As always if you or someone you know would like to be part of the special needs spotlight series please email me at thislittlemiggy at gmail dot com. If you've emailed me and haven't heard back I promise I'm getting to you!
Have a great weekend!