I feel this is a very nice and needed sentiment….
(the one down below….LOL- copied from another Ds mom!)
I do not feel the exhaustion- not from my experience as a mother to Connor- as a wholistic chiropractor who works mainly with people with Ds…well that is another story!
I feel very blessed with how healthy Connor is. We have gone through many early challenges with him- TMD ( pre leukemia), open heart surgery, feeding issues, …I feel like there are things I am missing, lol….but we work hard on his health and it has paid off and I am so grateful, because I know many others who work just as hard and there are still challenges….I know because of the work I do with the Ds community…. working with hundreds and possibly thousands, I see and know firsthand it is not always easy.
For me, I try to no think too much about what may or may not be ahead- I try to stay present as much as I can, even during the tough times. I am not always successful by any means, and sometimes need some help re-centering.
This is such a fascinating journey….on the one hand, if you understand the biochemistry of Ds, you know the future is not so bright, in general, for those who are not actively working on supporting their biochemistry. So there is always this space of “Am I doing enough”. “Am I missing something?’.. Why is he /his labs/his body not responding the way I would like?” “What can I be doing better?” “Why am I not doing some of the things I know I need to do!”
It is easy to get trapped and stuck here- and that is a dangerous illusion.
And on the other hand, I balance this with …” whatever will be will be. We ARE doing a lot to support him! This is our journey, but this is also HIS journey. I trust in the love and the every present goodness of God and all creation, and I trust that everything works out for a higher transformation, even when I can’t see the big picture, or even with my experience tells me differently.”
It is an interesting tightrope of vigilance, action, intensity with faith, letting go, letting God….allowing yourself to grow and be changed by this life.
I love my Connor. And I love that he chose to be here, with Down syndrome…it is selfish on my part, 100%- but I feel very deep down, in my bones, in my soul, in my heart- that I could not, would not have been able to have my OWN transformation of the heart, without him.
I so love my fellow Ds mommas! You have all made my life so much richer as we travel down this road together!
“For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child.
The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child.
Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments, but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting life with Down syndrome can be hard. Very hard.
The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them.”
This Down Syndrome Awareness Month, take a moment to see the momma behind the child.
Copied from another DS mom.