Tuesday, January 25, 2011

Turner Syndrome Awareness Month- February

So, this February will be the first ever Turner Syndrome Awareness month. February is perfect for TS because it's the shortest month of the year. One of the most prominent symptoms of TS is short stature.
This is a cause that is very, very near to my heart because my daughter Jillian has Turner Syndrome. Jillian is 5 years old and I am SO, SO grateful that she was diagnosed at birth. You can read her story in an earlier post from last year. You can also learn more about TS by visiting Turnersyndromesociety.org.

TS is much, more than short stature and it effects 1 in 2,500 females. 98% of baby girls with TS are miscarried. TS accounts for 10% of miscarriages. there is no cure for Turner Syndrome.

Raising awareness is important because early diagnosis is imperative for the best treatment for TS. It very often goes undiagnosed because the symptoms vary so widely. So many women have missed out on important medical help simply because their doctors did not recognize the symptoms until it was too late to treat them.
Raising awareness will also help the girls and their families get the financial assistance to treat their various needs. Just to give you a picture... Jillian saw 11 specialists in her first year of life. She sees an endocrinologist every 3 months, a cardiologist and a nephrologist (kidney). She takes a growth hormone shot every night. The medicine alone costs approx $2,000 a month. She has had other expensive medical issues and will begin hormone replacement therapy around the age of puberty. THANK GOD our needs are met and we have help with all of her medical bills. That is not the case for all of the girls.

I am purchasing little pins to wear for the month of Feb. If you would like to help raise awareness by purchasing a pin, please let me know. They also have bracelets for $3 and t-shirts for $18.
Thanks so much for your help in raising awareness so these girls can live the healthiest lives possible.

Thursday, January 6, 2011

Wednesday Night Lights

Last night was Wednesday and every Wednesday we have an evening service at church. It starts at 7 and usually ends between 8 and 8:15. Last night after I checked my kids into their classes, I got to the sanctuary and slid into my seat on the front row. I looked around me and saw that I was once again on that front row by myself. But As I looked I saw it was no wonder.... as there were 3 little coats, several coloring pages, gum paper and and a myriad of different dolls strewn about on the chairs. I could only chuckle and sigh as I shoved a pile of dress-up purses and pillow pets over to make room for Nate who would be joining me since we were finishing up a video series.
The video series we are studying is "In Search of Timothy" and it's all about serving in the church. As I watch and listen to some of the stories and examples the speaker shared, I wondered how many of the pastors he mentions are young pastors with young kids. Cause I just have to say... this is hard. I mean I always knew that we would pastor because we've talked about it since before we were married 10 years ago. But I never could have imagined what it would be like. I love it. But It's much tougher than I thought. I suppose it's like having kids though... I always knew that I was supposed to be a mom. But I never realized how hard and demanding it would be until my first child was born.
Now, pastoring a church, is much like having a second set of children. Granted , most of them are older than me, but I still feel a deep love for them, a sense of responsibility and a desire to see them walk out the calling God has for them.
Along with the emotional ties that go along with this job as pastors wife, there are the practical expectations. And here is where I am struggling to find balance. There are places to be and people to talk to. As the pastors wife I feel I should be out in the foyer after service greeting new people and in the sanctuary making people feel welcome. I should be leading bible studies. And I WANT to do these things. It would be ideal. But the reality is I have three small children who need to be picked up after service. Three small kids to corral as my husband greets and shakes hands. Three small children whose normal bedtime is 7, so that means they arrived at church a little on the sleepy side, so by now it's 8:30 and it's taking all my self-control and theirs to keep from screaming... which is why they end up running around like crazy people while all I can do is stand there, arms loaded down with aforementioned coats, papers and dollies, looking NOTHING like a friendly, loving pastors wife and more like a twitchy-eyed, frizzy haired, mascara-smudged bag lady whose shirt is riding up and showing off her muffin top.
So it's 8:45 now and we are turning off the lights and setting the alarm and the kiddies are running into the dark, poorly- lit parking lot without their coats on. We climb into the van and crank up the heat. The kids talk ALL THE WAY home about their class and their friends and their snack and who ate their boogies that night. It has been another long day.
So, I had just tucked in Jillian and sang to her and prayed and laughed and kissed her goodnight. I go into Nathaniel's room where Nate has already started the bedtime routine. " Tell mommy what you heard when you listen to my heart, Bub" Nate says. So Nathaniel puts his little head to Nate's chest and says " Bubby, Bubby". AWWWWW! My heart melted and I asked him what my heart said. As he listened he said " Emma, Jill". " That's right!" I tell him, " and Bubby too!".
My little boy understands that his daddy and mommy have hearts that beat for him. That he is loved that much.
It is my prayer that as I attempt to find balance in this new role, that I will remember to lay my head on the Fathers heart and hear His heartbeat. I know that as I do this I will hear the names of all of His children including my own, my kids and the names of the people in our church. I believe that if I will just allow my self to rest there in his bosom, listening to that beat, it will be the rhythm to which I move and dance my way through this season of my life and every season from here on out. The things that move God's heart will be the things that move mine. I will hear His heart race with joy as I pour into, first my husband and children, and then others.
From the beginning of time God's heartbeat has pounded out the names of His babies. If I purpose to know Him, love Him and rest in Him, perhaps my heartbeat will begin to echo His.