Today I am grateful and honored to bring you a second guest blog from my friend Lisa. As you may remember, her son Blake was born with Down Syndrome, so in honor of National Down Syndrome Awareness Month, Lisa has so generously shared the next part of her journey with us. The lessons that she has learned over the past year are not limited to those who might have children with special needs. Everything that Lisa has experienced is something that all of us can relate to, and the deeper understanding of motherhood that she can lay claim to I truly admire. Take it away, Lisa…
Sometimes in life you have to experience things as opposed to relying on words, opinions or “facts” to get the picture. Growing up I was always one who had to “learn the hard way” and suffer the consequences of my actions to get the lessons, and I am grateful that this is still the case. A little boy named Blake rocked my world May 13, 2011 when he was born with Down Syndrome (Read our full story HERE). The last 17 months have literally transformed me as a person and a mother. Not only was I blessed with a baby boy who has a “little something extra” in the chromosome department; I have also become part of an amazing community whose foundation is built on the principals of Support, Inclusion, Respect and Love. I feel the true key to change is education and information, and in honor of Down Syndrome Awareness Month I would like to share five things I have learned in the last year about being a mother of a child with Down Syndrome.
It’s All Relative: I naturally found myself playing the comparison game between my son and daughter. I think I naturally felt the urge to compare as I saw/felt no difference between my two children, as I remember Kaleigh doing all the things I witness Blake do. An example of a comparison was teething patterns/time; my daughter got her first teeth at four months and Blake at ten months. At first I could not help making comparisons and have recently realized that it is all relative and incomparable. Each child will reach milestones on their own timeline and do their own thing.
Great Expectations: If you want to set yourself up to fail, getting caught up in your own expectations is a good way to go. I have had to curb my natural expectations in all situations when it comes to my son’s development (and my daughter’s too). I would find myself frustrated or disappointed when he/she did not meet the expectations I had. I guess it was just my natural instinct as a mother (and a human being) to have such expectations for my children. I have learned to take a step back and realize that my expectations are irrelevant to my children’s lives and I need to enjoy them each day, expectations aside.
No Clocks: Because of Blake’s diagnosis I am forever presented with developmental “ranges” for when he should walk, talk, self-feed, etc. I have realized how freeing it is to have no clocks. Blake will do what Blake will do on his OWN timetable. I have learned to let the time and timelines go and to live more in the moment. It is something that applies to all children. Time goes by so fast and being cognizant of your fleeting time with you children will help you become more appreciative, present and have less regret.
Let Haters Be Motivators: In my naive, kind way, I felt children would be exempt from the haters – well the adult ones anyway. Turns out this is not the case. People still seem to feel the need to spread negative energy, harsh words and judgment to justify their own low self esteem. Instead of my first reaction being the utter devastation or anger hearing of a hater (toward those with Down Syndrome or any other group) it is now my motivation. My fear for Blake was that those in the outside world would treat him with disrespect and unkindness. I came to the realization that no matter what, there are haters out there for everyone! The haters are now my motivators to be a loud voice in the DS community, to educate and suffocate their negative with my POSITIVE!
Re-Defining Moments: Having a child with a perceived difference can initially be shocking and/or devastating as a mother. My greatest task over the last 17 months has been re-defining “normal” as it is a very subjective term. I have learned to enjoy Blake for who HE IS, not what terms others choose to define him as. I really love seeing his unique personality develop. Really, regardless of his extra chromosome he is my son and is here with us to contribute something fabulous to this world, and the lives of others. He contributes something to mine every single day!
The last 17 months have been a really transformative ride for myself and for my family. The growth and evolution in my character alone has been pretty astonishing. My resolve has been strengthened as a mother and as an advocate for both of my children, and other parents/children in the Down Syndrome community. The truth: It really IS about the journey, as the destination is irrelevant if the journey was not enjoyed or at the very least a learning experience. Is it challenging to have a child with Down Syndrome? YES! Is it challenging to have any child? YES! It’s all a matter of perspective. If I could go back and tell the sad, scared Lisa weeping in that hospital bed 17 months ago something, it would be “You CAN DO THIS, no road map required, your son will be your greatest teacher and guide”.
Thank you so much for sharing more of your story, Lisa. Words cannot describe how much you inspire me in my own journey through motherhood.
What lessons from Lisa’s story resonate most with you? Let me know in the comments.