Sunday, May 12, 2013

The Invisible mom

This was shared to me by a friend and I think its a perfect reminder on Mother's Day.

To all the incredible Mother's I am blessed to know especially and including my own!!!!


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 fueled 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.

Author unknown

Share this with all the Invisible Moms you know... I just did.

The Will of God will never take you where the Grace of God will not protect you.

Wednesday, May 1, 2013

A New path

We had quite a LONG medical appointment this morning with endocrinology for the boys. In short (he,he) the doctor believes given everything in the boys history and previous lab work, that their bodies just can't utilize their growth hormones effectively. He says 80% of preemie kids will "catch up" or shoot up on their growth curves by age two. He says the rest usually never catch up without intervention.

For all those who ask: yes we own mirrors. The doctor knows our heights and our parents heights. We understand our children would have never touched six foot status. We are simply talking "normal" growing patterns. The average child this age grows on average three inches in a year, our boys haven't even grown an inch this year and because they started so much smaller than the average---and they have never shown a growth "spurt", it is unlikely that they can EVER "catch up". At four years old (tomorrow actually) they are the roughly the size of a 16-24 month old. 

He pulled up the boys growth curve line and we solemnly reviewed it. In four years they haven't budged a bit and have even fallen off their own line multiple times. He said this is really common for babies who had placenta problems during pregnancy which it was documented early on that ours had. No amount of food can "fix" that. I feel sad about this but also just a little bit vindicated (about the food stuff) at the same time. A feeding tube certainly wouldn't help this. All this high fat food diet hasn't budged either one taller a bit. We will take them for a full panel of blood work to verify nothing has changed and then push for insurance approval for growth hormone injections.

We went over the potential issues that are known about for using growth hormones in kids. Two particular concerns for Alex are shunt and scoliosis issues. In a very small percentage of kids, growth hormone injections could increase intracranial pressure, obviously HUGE shunt worry but he said this is rare and we will watch for signs. He said we can start on a lower dose and work up for this reason. The other concern is worsening of his scoliosis  It was the reason we didn't push forward with growth hormone a year and a half ago. well that and we met with a different endocrinologist at that time and we just thought Alex needed more time to grow. It wasn't as clear about the statistics on preemies and catch up growth.

So the scoliosis issue is that any growth spurt can really worsen existing scoliosis  Alex's is already in "watch" mode with ortho and has been for quite some time. However that doesn't mean we should ignore the fact that Alex just isn't growing in favor of being content that his scoliosis isn't changing. As endo explained, you wouldn't try to stunt another child's growth if they were growing normally, even if that child also had scoliosis. That made sense to me.

If the boys are unable to really process their growth hormones effectively, we should try to help with this if possible just as you would if they had a thyroid issue. Right now their bodies are closer to that of a MUCH younger child. He explained its more than just height, its bone structure/mass, growth of their organs (I kept thinking about their lung issues even though so much more improved this year than last, still requires breathing treatments through the night for every cold--simple growing of their bodies will also grow healthy lung tissue to take over the diseased ones).

We are NICU veterans. When the boys were born, we were thrust into a world where we quickly had to learn medical lingo if we were to grasp everything that was happening to and for our boys. We had lengthy discussions and signing consents being made to understand for every treatment benefit there was also a risk; risks that were known, and possibly risks down the road that could be learned later. For all the life saving miracles that happened for our boys their early months, there is also so much that is "guessed" by the medical professionals and much that is still unknown. When it comes to your childs health, their life, you want certainties, you want guarantees so its a very hard realization that even the specialists or the "experts" don't have all the answers. Those days were the hardest days of our lives but very powerful lessons learned. It was no surprise then when I asked this specialist if growth hormone will help OUR boys, given their history, health issues and current growth pattern and he said " there is no way to know for sure until we try".

We went into that appointment prepared that this would probably be recommended. We had researched and talked at length about pros and cons even before we heard all the pros and cons. I pray that our boys will get approved by insurance and have the chance to see if this can help them. I pray that if they do get approved that they will have the most benefit with the least amount of risk and side effects. At the end of the day, its a leap of faith. But then again, so are most of the wonderful beautiful things in life!