World Down Syndrome Day 3.21.20
Russell is challenging.
He drops and flops, refusing to move or come, forcing us to either wait a potentially exorbitant amount of time or pick up his 40 pounds of resistant weight. It has taken over 20 minutes to get from campus to our home, which should take about 2.
He fights us on going pee when it’s time to leave the house or when he needs to wash his hands when he walks in the door–almost 100% of the time.
He usually needs us to feed him at dinner time, or he won’t eat (except for the white rice).
He has started bolting recently. He is gone in the blink of an eye. We are so thankful to live in such a safe community.
He cries hysterically when his brothers get ahead of him, be it walking or riding their scooters or bikes, even if he can still see them.
He will kick or hit at random, although this has improved so much. It has happened so much over the years that his brothers have become pros at dodging it at just the right moment, and moving on as if nothing even happened.
He can throw a fit at any given moment for a transition that he does not want to do. Very often it’s because he is just plain exhausted. Sometimes it’s because he really doesn’t want to stop what he is currently doing.
He comes home after school trying so hard not to melt down, but unable to keep it in. His brain has worked so hard all day long. Everything he does at school, he has to work harder at than typical kids. He is spent at the end of the day and could go to bed at 6 pm. We need to meet his immediate needs, while helping him to regulate his emotions for an extended period of time.
He could decide to just throw the object he is holding, without warning, near your head. This has also greatly improved, but was something that went on for years.
He might push a friend out of frustration, hurt or anger, or out of a desire to play but may have difficulty communicating what he wants.
He is relentless in asking for what he wants, over and over again, with no end in sight. He will not give up.
Raising your voice at him at all can set off a deluge of tears that takes you into the next century where you forget why he was crying and he forgets too.
Russell is challenging. People might not see that side of our lives. His brothers and Clive and I, face challenges with him every day.
But there is another kind of challenge that he brings to our lives too. Russell has changed me.
He challenges me to sit with the emotion of the heartbreak I feel when his words get stuck on a stutter or I can only understand about 30-40% of a story that he is telling me about his day.
He challenges me to “sit down,” “stay,” “help,” “wait,” and “play.”
He challenges me to just stare into his eyes and let my heart just explode with love for a minute.
He challenges me to play the same interactive game over and over just because we can.
He challenges me to giggle and laugh and throw my head back with uninhibited joy in the moment.
He challenges me to sing with all my heart at the top of my lungs.
He challenges me to find all the ways to cuddle as close as possible and to just feel and hear his little sleeping breaths on me and to just breathe in the moment.
He challenges me to a level of patience that has changed motherhood for me and changed life for our other children.
He challenges me to slow down and take my time, to help, but not to fix.
He challenges me to realize, finally, that there is so little in my control and to watch and see it unfold–the ugly and the beautiful.
He challenges me to see his dad through his eyes–his rock and his safety, his playground and his strong arms.
He challenges me to see, to really see, his brothers. Their strengths and beauty and quiet living and loving that would otherwise not be, or might go unnoticed. He helps me to see their pain and struggles too, to see all of it, all of them.
He challenges me to let go of peoples’ opinions and to focus on what matters right in front of me. He challenges me to express my true emotions, no matter what anyone else thinks. Russell is so real.
He challenges me to see that you don’t always have to have any good reason to cry. Sometimes you’re just done. You’re just tired. You just need a good cry.
He challenges me to see the indescribable gifts that children with all special needs are. He, and so many others, are brave beyond words. He challenges me to set absolutely no limits on him. He has exceeded our expectations in countless ways. He perseveres more than anyone I know. He is so good at basketball.
He challenges me to see the wisdom of the world and the foolishness of God. The world has so much upside down. Russell wrote his name for the first time, all on his own. He wrapped his arms around a friend who was crying. He wrapped his arms around a friend, just because. He kissed me and told me he loved me. These are things that matter. The wisdom of God is foolishness to the world.
He challenges me to sit with that painful, unbearable, heart-wrenching mother’s love, to feel the ache and the longing and the joy and the pride. To let it all exist together in one big bubble–bursting at the seams and floating weightlessly all at the same time.
He challenges me to say “sorry” faster than a racing horse. He will not pull on the reins until you have heard it and accepted it.
He challenges me to watch my facial expressions and my body language even more than my words.
He challenges me to see the supernatural all around me. Russell sees angels.
He challenges me to live and love with abandon, wholeheartedly without conditions. Russell’s love is extra. I want to love extra too.