It’s been a year now since our journey began and it’s mind blowing to see how far our sweet girl has come. Haven has endured so much in this year, rigorous testing and evaluations some that lasted for hours on end, Multiple procedures, MRI that lead to the discovery of her Chairi, EEGs, hearing and sleep studies, trips to Rileys, approximately 300 hours of therapy, endless appointments with both of us bawling and Me begging for answers. I’ve questioned God, our doctors, myself, and the world around me. It has truly been the hardest year of our lives, but here we are, still standing, still enduring, and still fighting for Haven.
When I started this journey a year ago I had very few people behind me and a very scary unknown world ahead of me. I really had no idea what I was doing, shoot most days I still don’t feel like I do, but what I did know was that I adored my child and as scary as the world ahead seemed it was so much scarier to think of Haven spending the rest of her life that way and never meeting her full potential.
A year ago Haven could not say momma or love you. Now she says Momma, Matt, and “MIAAAAAA” all day long. Love you comes and goes but it’s there and that’s a giant win. My baby says momma now. I waited SO long for this. Even on the days she says it a thousand times I remind myself to not take it for granted because for months and months I prayed to hear it.
A year ago Haven could not walk up stairs correctly, she walked on her tippy toes the majority of the time, she was described as one of the most tactile defensive kiddos her OT had ever seen, last month she phased out of Physical Therapy. With the help of a proper sensory diet and her learning how to meet some of her sensory needs on her own she has become less tactile defensive. She walks mainly normal now and can properly navigate stairs, little feats to most but giant accomplishments for our baby.
A year ago Haven very rarely would make eye contact with anyone. She buried her face in me 24/7. People she used to love and adore suddenly terrified her. Her doctors thought she had hearing loss because she didn’t respond to her name. A year later you say Haven and she responds “WHAAAAAAAT?!” in a way that always makes Matt and I laugh. She makes eye contact with most people, even if brief. She even waves hi and bye to friends, family, and sometimes strangers now.
A year ago Haven lost her happiness. She lost the light in her ears. I watched my once bright, blue eyed, blonde hair, beautiful girl just drain. The bad days heavily outweighed the good and I was genuinely terrified of what the world ahead looked like. A year later and although every day is not perfect and some are still so hard things are so much better. We do therapy 4 times a week still, and it’s Amazing the impact the therapists have had on Haven and honestly me as well. I feel like they are my therapists too most days. They have helped me to be the best mom to Haven, they’ve taught me the proper tools to better parent my child and how to handle any issues and the unknown. I am able to keep my cool and not worry so much about what others think. Haven laughs more, and smiles her big toothy grin and makes silly faces. She loves baby Lyla and loves playing hide-and-seek and ring around the Rosie with Mia. She’s Mia’s mini me, monkey see, monkey do! Her speech went from literally nothing to starting to put 2 and 3 words together. She still has her quirks, she says certain words and phrases a thousand times because she wants to communicate but doesn’t have all the proper tools to do so yet. She becomes obsessed when something gets in her mind and is still very head strong but she is a true delight to everyone that has the joy of meeting her. Her eyes light up again, her life is so contagious it could be bottled and sold, she loves music and dancing, she’s seriously the funniest toddler ever. She has made such a giant impact on our lives, and I thank God every day for picking me as her momma. I can’t wait to see all the amazing things she is going to do in her life.
Thanks to all who have followed along and loved us hard through the scary days. We are truly blessed with the best family and friends. We love you all!