I have been cruising the "Moms of special needs kids" blog scene over the past few weeks. Sometimes I get that "you know just how I feel" euphoria, but most often I end up in tears. I am so proud to be Maaike's mom, so proud of her, so proud of how far we have all come, but still longing for her to have a "normal life."
At dinner every night we have a little tradition of sharing our best and worst of the day (stole that from the wonderful Darringtons). It has been a wonderful way to get into my kids heads and learn about how they view the world. Coy is usually the ring master of the event and starts by describing a family member. Then we guess who she is describing and that person shares their best and worst. Maaike gets to participate too. Sid or I will be her spokes person and picking out her best and worst events of the day are usually pretty easy. Worst= throwing up, a common event. Best= wrestling with her Dad and siblings. Worst= crying through physical therapy. Best= bath and massage time. Being home bound for 6 months of the year it has been simple daily traditions at home that have kept us going.
I love sharing our best and worst of the day. I love when my kids say their best part of the day is "right now!" (i.e. having dinner together as a family). But I have a tinge of pain in my heart when it is Maaike's turn and she is described for the guessing. "This person has a trach...has a purple lip...breathes through her neck...has a huge tongue..." All these things are true and there is absolutely no maliciousness in Coy or Kees' descriptions, but I am trying to mentally brace myself for the things cruel and ignorant kids (and adults) sometimes say.
When parent of kids with special needs say, "I wouldn't have it any other way" I don't get it. Maybe I will feel that way in many years as I look back on how things have worked out, but I would have it another way. I would have Maaike not have to go through trach changes, surgery, and the stares of strangers. I would make it so our family could go to church together year round and not have to divide up for every activity. I don't want Maaike to have a nurse follow her every second of the day when she goes off to kindergarten... but the fact is that if this is what it will take to have her with us then we will roll up our sleeves and gladly do it, but I do wish she could have an easier way.
Maaike is napping right now, hooked up to 4 different machines, and blissfully unaware that the rest of us don't snuggle with tubes and wires as we snooze, but that wont last for too much longer. Soon she will start to realize that there are extra steps in her day and challenges the rest of us don't have to tackle. Oh baby girl, may we raise up to have patience with your differences and the confidence to share your beauty.
One of the last questions I was asked during the Puj-filming was in effect "Why the dream of moving to China and how has that changed?" In that moment an answer I had never before considered came. Personal revelation if you will. Part of moving to China was to open our children's horizons, let them see and experience first hand how other people live. So many of the other parts of the China dream have now fallen to the wayside, but through Maaike our children will still see and experience first hand how some other people have to live. They will know that differences are not bad, but endearing. They will see that we can all look different and still be beautiful. And hopefully they will feel empowered to accept the good in others and help lighten the burdens that are heavy...and so the China dream lives on.
(this is the one and only photo of the five of us taken in China)