Thank you Modern Nest Photography
My last post, which was over three months ago, was about how for a brief moment in time, my life was normal. Lots has happened over the past few months; we moved, Adele had eye surgery, we've had 3 developmental aides, with a new one starting next week and the craziness of going back to work part-time. I feel like my head has been spinning and that I get pulled in so many different directions. While James and I were laying in bed one night, I said to him that I didn't know if I was cut out to be a mom, a wife. It's hard to admit defeat sometimes, but when life is going at warp speed and not taking the time to enjoy all of the fruits and joys, it can really take its toll on a person.
We have decided to go away next month for a few days to find ourselves once again, to reconnect with each other and our children. We desperately need a break from life.
I've been back and forth with my thoughts on Down syndrome lately. That may sound bizarre, but as we get closer to transitioning from home life to school life, the worries are ever present. I recently went to our local school to talk about programming for Adele and what the next few years would look like for her. There really isn't a lot in our town, so it was a bit discouraging. James and I are tossing back and forth the idea of just keeping her at home for one more year and then enrolling her in our community preschool. She is involved in Special Olympics, swimming, four hours a week of therapy and community outings. Is this enough? How much programming do three years olds need? Children with exceptional needs, do we sometimes over-program? Do we feel that the more the better? At what point do we just sit back and let them be kids? Can we just let our children with Down syndrome, just be kids? I find that as a mom to a child with special needs, I stretch myself so thin that I forget that she needs to just be a kid. Do I always need to focus on developmental milestones? Can't I just let them come? I should probably increase her therapy hours; she is allowed nine hours a week.....why are we only accessing four hours? I know why.......
I have a developmental aide coming into our home. I have a speech therapist coming into our home. I have a physio therapist coming into our home. I have an occupational therapist coming into our home. I have our FSCD caseworker coming into our home. I fill out monthly paperwork to get reimbursed for our expenses. I book hearing appointments. I book vision appointments. I book pulmonary appointments. I plan family outings where Adele can get around and have fun. I buy developmental toys on a regular basis. I turn into 'THAT' mom when Adele gets sick. I panic, I lose sleep, I think about the little one with Down syndrome who just lost her life to a pulmonary infection. I think about her tiny little passages and if they can get her through this cold, this flu.
This little being whose make up is different than others. A cold isn't always a cold.
I am doing enough.
My love does not waiver when it comes to my children, but I need some gentle reminders sometimes that this life that I have been given is for a reason. I have been given both girls for a reason. My patience, my strength has been tested time and time again. I've made it through the shit times, I've made it through the sleepless nights. I've come out on top each time. I remind myself that Down syndrome is a part of my life for a reason and when I look at our children, I see beauty, hope and joy.
What is beautiful about Down syndrome?
1) Stunning almond shaped eyes
2) Sweet, smaller and gentle features
3) A little gap between her toes which will be perfect for wearing sandals
4) The weak muscle tone makes for the best hugs
5) That smile
6) The love, the unconditional, beautiful love
7) The joy
8) Beauty inside and out
9) There is no judgment
10) So innocent, so pure and so loving
When life gets overwhelming, when you read #theluckyfew, over and over again, when you feel like all the Facebook posts and Instagram pictures are what you strive to be, don't be discouraged. I wish sometimes, I would see that your day sucked, that you curled up in a ball and cried in the corner of your bedroom because the stress and worry took over. I want to see your true reality and not your projected reality. I have never been in competition with my fellow moms, I have never come across as the mom who always has it all together. I am real. I have cried. I have wished for normalcy. I have questioned myself over and over again. I have wondered if life would be more calm, less busy without a child with Down syndrome. I have let myself go there, because it is ok.
Today, I pick myself up off the ground. I tell myself that my world is as it should be. I tell myself that what I am doing is enough. I ease up on myself. I remind myself that I am travelling this journey with some pretty fantastic people. I am thankful for what Down syndrome has done for our lives. I am allowed to feel defeated and show weakness because I am human, I am a mom. I am good enough for this role. I will stumble many times, but I will always get back up on my feet and will be grateful for the blessings that surround me.
