Brookie is a busy bee and keeps Mommy even busier. She attends therapy at a clinic 3 hours a week- occupational therapy, physical and music therapy. During the school year she has preschool 3 days a week and there she also receives pt, ot, speech and vision therapy. She has nursing and we are blessed with amazing nurses who happen to be friends so it is seriously such a great situation. Brookie is super loved! She also has attendant care to help me manage her caregiving, household tasks as well as habilitation hours done by Ryan's cousin Sara. She is wonderful. She comes over 4 days a week and works on Brookie's therapy goals. We are blessed to have friends and family who help us raise this special sweetie, but our lives are constant action, never a dull moment in this house. Oh and I can't forget she also as in home speech and feeding therapy 2 hours a week!
On top of this business Brookie sees many doctors and specialists. She has 2 neurologists, one to help with her epilepsy and one for sleep issues, she has a developmental pediatrician to help track her progress and aide in getting state services, she has a GI doc for her reflux and digestion issues, an orthopedic doc who sees her for many reasons but currently is watching her scoliosis and spasticity in her feet and is recommending bracing and some other supportive devices for Brooke, she also sees a physiatrist which is a rehab doctor, an ophthalmologist, a geneticist, AND I can't forget her regular pediatrician, as well as the orthotics company we see often for brace fittings etc.
Add all this to the schedules of Juliette and Audrey with their school, ballet, choir, piano, church activities, and soon gymnastics it makes for a crazy life. Luckily I thrive on being busy and with my trusty old school planner I actually write in ( no I don't use my phone) I manage to hold down the fort. But yes it can be hard. Oh and ps I work part time cleaning and organizing homes to fund said activities, ha! Such is the life of a special needs mom!
So yes Brookie is busy, but all if these services and therapies are blessings. They have helped her meet goals her docs originally never thought she could accomplish. This girl is a fighter with a sweet smile and a happy spirit. She never gives up and I am always in awe of her tenacity. Truly she is Brookie the Brave.
Brookie cannot walk so as she grows it IS more difficult to care for her. We now have a modified bathroom with a roll in shower and chair to bathe her in. We have ramps on our home for her wheelchair. This little lady had a lot of equipment. She requires a wheelchair, special needs stroller, special needs car seat, pediatric stander, adaptive high chair, Sleep Safe medical bed, shower chair and someday a walker. This girl has taken over our house with her fancy stuff but of course we don't mind. Still, having a disabled child isn't easy and when I look at the medical equipment taking over my living room it reminds me that our lives will always be different. She also requires oxygen and a pulse ox monitor in her bedroom in case of an emergency. Brookie is a total care child who is totally worth every sacrifice!
So I didn't write this whole deal out to brag or to act like " whoa is me" more to shed some light on what it's like to have a special needs child with global delays and health concerns. From the outside I try to keep it all together but it does take work and letting others in to our crazy life might inspire or it might lend you to understand. Either way, I wouldn't trade this life for anything, I don't do boring days:).
Brookie may be the busiest 4 year old in the neighborhood but she is an example. And is loved. And is wonderful. I am completely fine she has made me into a nurse, caregiver, advocate, organizer, chauffeur, teacher, whatever title falls under the special needs mom's endless list of duties. It is who I was meant to become and daily I pray I am doing just that.
-- Brit
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