Invisible Mother

 It all began to make sense, the blank stares, the lack of response, the way
 one of the kids will walk into the room while I'm on the phone and ask to be
 taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'
 
 Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
 the floor, or even standing on my head in the corner, because no one can see
 me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
 hands, nothing more! Can you fix this? Can you tie this? Can you open this??

 Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
 to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
 the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

 Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
 What's for dinner?'

 I was certain that these were the hands that once held books and the eyes
 that studied history, music and literature -but now, they had disappeared
 into the peanut butter, never to be seen again. She's going, she's
 going, she's gone!

 One night, a group of us were having dinner, celebrating the return of a
 friend from England . She had just gotten back from a fabulous trip, and she
 was going on and on about the hotel she stayed in. I was sitting there,
 looking around at the others all put together so well. It was hard not to
 compare and feel sorry for myself. I was feeling pretty pathetic, when she
 turned to me with a beautifully wrapped package, and said, 'I brought you
 this.' It was a book on the great cathedrals of Europe . I wasn't exactly
 sure why she'd given it to me until I read her inscription: 'With admiration
 for the greatness of what you are building when no one sees.'

 In the days ahead I would read - no, devour - the book. And I would discover
 what would become for me, four life-changing truths, after which I could
 pattern my work:

 1) No one can say who built the great cathedrals - we have no record
 of their names.

 2) These builders gave their whole lives for a work they would never
 see finished.

 3) They made great sacrifices and expected no credit.

 4) The passion of their building was fuelled by their faith that the
 eyes of God saw everything.

 A story of legend in the book told of a rich man who came to visit the
 cathedral while it was being built, and he saw a workman carving a tiny bird
 on the inside of a beam. He was puzzled and asked the man,
 'Why are you spending so much time carving that bird into a beam that
 will be covered by
 the roof. No one will ever see it'

 And the workman replied, 'Because God sees.'

 I closed the book, feeling the missing piece fall into place. It was almost
 as if I heard God whispering to me, 'I see you. I see the sacrifices you
 make every day, even when no one around you does.

 No act of kindness you've done, no sequin you've sewn on, no cupcake you've
 baked, no Cub Scout meeting, no last minute errand is too small for me to
 notice and smile over. You are building a great cathedral, but you can't see
 right now what it will become.

 I keep the right perspective when I see myself as a great builder. As one of
 the people who show up at a job that they will never see finished, to work
 on something that their name will never be on. The writer of the book went
 so far as to say that no cathedrals could ever be built in our lifetime
 because there are so few people willing to sacrifice to that degree.

 When I really think about it, I don't want my son to tell the friend he's
 bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
 morning and bakes homemade pies, and then she hand bastes a turkey for 3
 hours and presses all the linens for the table.' That would mean I'd built a
 monument to myself. I just want him to want to come home. And then, if there
 is anything more to say to his friend, he'd say, 'You're gonna love it
 there...'

 As mothers, we are building great cathedrals. We cannot be seen if we're
 doing it right. And one day, it is very possible that the world will marvel,
 not only at what we have built, but at the beauty that has been added to the
 world by the sacrifices of invisible mothers.

The most frightening moment was June 7th, 2013. Liam didn't sleep really at all the night before and he went to bed fine around 9pm but then at 130 he woke up screaming and rubbing his legs. He stopped when I cradled him, but the moment I put him down he would scream. this went on until 830 when he finally let me put him down. Liam then went on to sleep until 3pm ate lunch and went back to bed. He didn't walk/crawl or even attempt to do anything but sit in the chair I put him in and have me hold him. The doctor says that some days are just bad ones. He didn't even want to see him!

Most exciting moment was the first time he said momma. I was blessed to hear him say it countless times for 3 whole months; before he became non-verbal for no known medical reason.

Did you know that MPS is detected by a simple blood or urine test. But it is currently not a test regularly done in pediatric doctor offices. Please at your next doctors appointment ask them to test. Especially if your child has autistic tendencies, developmental delay or is regressing.

There is no cure but through awareness there is hope! 


Liam may have a lot going on but at the end of the day he is just a toddler, who wants to play with his cars, balls & watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play. 

Callista and I underwent fetal surgery to repair her spina bifida when she was 22 weeks gestation at Vanderbilt Children's Hospital.

At 2 days old, she a shunt placed for hydrocephalus.

At two months old she had a decompression surgery.

At four months old she had a g-tube placed.

At eight months old she had a double hernia repair and a vesicostomy.

She currently has physical and occupational therapy 1-2 times a week.

The most frightening thing was the initial fetal surgery as we had to deal with the fact that we could lose her by trying to help her. She could have been born extremely early because of the surgery as well.

We also had a pretty frightening beginning. 12 days after we were allowed to bring her home, she started acting very funny. We took her to the ER and thank goodness we did. As soon as we got there, she stopped breathing and turned blue. They rescued her quickly but we ended up with another 2 month stay in the hospital where they did her decompression.

The most exciting part of our lives is just simply seeing her grow. Although she is far behind on her developmental milestones, every time she reaches one is a celebration. She is beginning to support her own head and has said her first word (Da-Da!).