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.

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.

Decluttering

Do you find that the days following Christmas are somewhat anticlimactic? I mean, I usually spend the last part of November through well... Christmas Eve running around shopping for that "perfect" gift, attending silly white elephant exchanges and staff Christmas parties. Throw in to the mix that for 95% of the functions I'm attending I am also required to bring a food item of some sort. So, of course that means extra grocery shopping. And extra cooking. Not to mention I like to make baked goodies and candies to give out at random. There are a few treats that I ONLY make at Christmas time, like peanut butter balls and Peanut butter cup cookies. They taste so much better when one anticipates their deliciousness for a whole year. ;)
Now, don't get me wrong... I usually love this. I love they way most everyone is moving together towards one common goal.... well except on black Friday when that "one common" goal is the last cashmere scarf that is on sale and some chick with her arms loaded down with the about 25 of them cause she plans to sell them on ebay, nearly knocks you down with her baby stroller. Well, then all my good will towards men ( and women) is left behind in a puff of designer perfume.
But I digress...
As I was saying.. I love the unity, the oneness, the parties and the singing. But what usually happens is, as I run in the door from one party and two hours later run out the door for another, clothing and receipts and paper reindeer projects are thrown about like confetti all over my home. That is until it's my turn to host and I quickly gather all the mess and stuff it into the office and shut the door..and lock it... which is an important step if you have 3 kids who will certainly open that door at the most inopportune time, revealing your big ugly secret to all your holiday guests. Then locks are imperative.
So today and yesterday, during the lull between Christmas and New Year I have spent some time "de-cluttering". You know, files and junk drawers and closets etc. I started last night with my email in-box. I know, strange.. but.. I don't have any explanation..it's just what I do. I wanted to keep the things that were important or special. There were emails with birthday pictures attached, news of my 2nd pregnancy, the emails where we let people know the updates with Jillian's health and ALL the encouraging emails we received back, news of the death of my dear friends baby and all the supporting, prayerful, tearful emails that replied.
And here's my point: As I read these emails...there were several from my oldest and dearest friends, my loved ones, new friends, friends that I made when I moved here. There were several that as I look back have remained steady friends..either for several years or for just a few. I was surprised at the relationships that I still have with some of these women. There are a few that I would have thought unlikely to be close friends ..but have proved to be exactly what I needed/need in my life. Some... we met and were instantly tight knit... and are still close to this day.
I could see that through all the emails..the consistency of these women in my life didn't change. They were the ones I ranted too, cried too, sent silly forwards too, etc.
Some of the women I don't talk to much anymore. And I'm not surprised by this either. We are not enemies, we just are acquaintances. And that's ok.
But I will say... there are about.. well 2..that have completely blindsided me. One in particular that for reasons not really known to me, has all but cut me out of her life. She isn't mean or spiteful and if I do happen to talk to her or see her... she is polite. I am only vaguely aware of the things that have happened in her life that are related to this "cutting of ties" so to speak and I have really searched my heart over and over and I know that.. it has nothing to do with me. I suppose in a way she is doing what she feels she needs to do to "de-clutter" .
It has taken me some time..but I am at peace with this. I will say I was a little surprised and hurt.. for more than just a little while. I had thought we were closer. She, apparently, had not. I have had to deal with the fact that she found it so easy to walk away. I took it personal and even blamed myself. But through all this de-cluttering I have realized, once again, it has nothing to do with me.
I am working on being able to let go of the burden of feeling "responsible" for EVERYONE'S behavior. I simply.. am not.
People come and people go. God has a way of helping us declutter the relationships in our lives. Sometimes I don't want that. I want to go on about my merry way, with everyone moving happily in the same direction, working towards a common goal. Trouble is... people change directions. And when I try to hang on to them as they run their way and I continue mine, I am pulled and become aggravated and frustrated and the relationship quickly becomes toxic. I was never aware that this is what has been happening... but it explains SO much.
As hard as it is for me to say good bye to these ladies that at one time meant a great deal to me... cause pretty much EVERYONE in my life means a great deal to me :/, It is what I need to do. I need to de clutter my mind, my heart, my time from the people and relationships that I can no longer influence in a positive way and who suck the life out of me.
I hold no hostility or animosity. I wish no ill will on anyone. Quite the opposite... I pray for peace and blessings and favor for them. They are NOT my enemies... I only have one and that is Satan.
They are still my sisters in Christ and at ONE TIME we were good friends. So I am letting go of all feelings of guilt and condemnation and responsibility for their choices and praying God's best for their lives, as I hold tightly to the relationships in my life that have been the constant, consistent, flexible, patient, understanding of my bouts- of- insanity, pour into my life, open their hearts to me, hold me accountable women. I am re- organizing my thinking, my priorities, my relationships.
There is a place for everything and everything is in it's place. There are the fair-weather friends that will always occupy a place in my heart, but not necessarily my day to day life ... and then there are my stormy -weather, all for one, one for all, push comes to shove, ain't walking out, regardless of geographical location friends. And they... well they each hold a piece of my heart in their hands.

Christmas 2010

Christmas 2010 turned out to be a pretty peaceful one. I have to say I had my doubts. I just had the hardest time finding "the Christmas spirit" this year. It's been an emotionally grueling year and the month of December wasn't any different. I'm still not sure if it's circumstances or spiritual (probably both) but I sure experienced the blues this year.
Thankfully, my kids have turned Christmas into something more special than I ever could have imagined. I do believe the anticipation of waiting for the kids to get up on Christmas morning is even greater than that which I experienced as a child. When I was a little girl, my brothers and I used to all camp out in their room. We would listen to Christmas carols, sneak out to check for Santa and tickle each others feet. The sleepover is a tradition we chose to continue with our kiddos. And while it's a little tricky now, trying to get everyone to sleep and all.. I do believe it will be a special time for them for years to come.
I loved the looks on their faces this morning as they came into the living room and saw their presents sitting in front of the fireplace. The glow from the Christmas lights gave the room such a warm, magical feeling. Nate, my parents and I looked on as they took turns opening their stockings and squealing with delight at the goodies inside; bubble gum, barbie dolls and even a personal roll of tape for each child (My kids have a strange fetish with scotch tape this year).
As I watched them, laughing and grinning and loving each other. My heart was at peace. And that was my only Christmas wish this year.
They really are amazing kids. And I get to be their mom. And if I never do anything else ... I am their mom. And that is enough.


The spirit of Christmas is love... Christ's love. A mother's love. A family's love.
Merry Christmas everyone!!!

Nathaniel

It's 2006 and life in the Sweeney household is pretty great. We have our two girls, Emma is 4 and Jillian is 9 months. We have plans to move to Arkansas in January of 2007 and so far things are right on track.

.. fast forward just a couple of weeks. I am ONE day late and my mind flashes back to the day the girls took a long nap.... hmmmm....
This particular evening I am planning to go out with some girlfriends for one of the girls birthdays. But I stop off first at the DOLLAR STORE and buy... a pregnancy test.
I get to the restaurant go in the bathroom and do my thing. You may find it interesting to know that this is neither the first time I bought a dollar store pregnancy test NOR the first time I took it in a public bathroom.

From my experience.... dollar store pregnancy tests taken in public bathrooms are ALWAYS positive.

And so it was that I was pregnant, unexpectedly, with our 3rd child. I took home a to go box from the restaurant that night, stuck the positive test in it and handed it to Nate. WHAT was his response to this little surprise???

" Really... oh wow. .... where's the rolls?"

yep. that's what he said.

Eventually, we both got used to the idea. Sure, this was pretty quick and not what we were thinking, but we had talked a little about having a third, trying for that boy.. so... here we go!

The thing that really confirmed for me that I was having a boy was not an ultrasound or anything like that. It was my appetite. It was INSATIABLE. I wanted to eat all the time. I craved everything, I dreamed about food. I was NEVER full.
So, when Nathaniel was born on May 18, 2007 at 2 in the morning, 3 weeks early and weighing 7lbs 15oz ... it was no surprise that he was a very eager nurser. I can say that I never had one problem convincing that boy to eat. I didn't have to rub cold, wet clothes on him to wake him up enough. He was ALWAYS ready and willing. Although, he did prefer only the mom, of course. No bottles for this big guy.
I can't even begin to describe the difference in parenting a boy as opposed to a girl. This little man stole my heart. He was happy and content and friendly. And he had and still has the most beautiful, full kissable lips!!
Nathaniel Joseph, our little surprise baby, has brought so much joy to our family. He is such a little cut-up and ham.





He plays rough like a boy and is a little bit mischievous. He loves to wrestle with his dad and ANTAGONIZE his big sisters, especially Emma. He is still as sweet and lovable as he was as an infant. And he loves his mommy. :) He loves for me to sing to him " You Are My Sunshine and You Are My Bubby Boy" and then he sings to me " You are my Mommy Girl".
He still likes to eat. A lot. He loves sweets and he loves to get dirty. He is usually... naked...or at least nearly so. I don't know WHY but the boy just doesn't like clothing!
He continues to make friends with everyone he meets, which makes me think he would be a fabulous pastor.. or politician. Right now he is content to use this skills to get candy from the ladies at church or to sweet talk Mama Bear into an extra "turn" at her house.

He was unexpected and unplanned. We had not prepared for another baby so soon. But when I look at Nathaniel, I remember that sometimes God places unexpected things in our lives. Even though we feel unprepared or inadequate, many times God uses those situations to provide the biggest blessings.
Nathaniel- gift from God.
Joseph- God will increase.
Nathaniel, is a special surprise gift from God. The Lord knew how much we needed him and his sweet, caring, trusting personality in our family. And He has increased our joy and love beyond what we ever thought.
I love my little man and it is and always has been my prayer that he will be tender towards God at an early age, sensitive to His voice and a man after God's heart. As a baby I sang to him every night, as he nursed, "when the spirit of the Lord moves upon my heart, I will dance like David danced. I will dance, I will dance, I will dance like David danced". I pray that this will be true for him his whole life, that he will allow Gods spirit to move on him and pursue Jesus with unbridled passion.
I love you, honny man.

Jillian

Jillian Faith is our second daughter and the middle child. When Nate and I first began talking about when we would like to start trying for another baby ( that day according to Nate ;) ) little did we know, she was already conceived.
By this time I had been a mom for nearly 3 years. So reality had set in and I knew what to expect... or so I thought.
Jillian proved from the very beginning that she was anything but typical. I've blogged about her health issues before so I won't go into all that now ( you are welcome to go back and read it) except to say that she is one tough little chicky.
With her diagnosis of Turner Syndrome, her birth was certainly rocky...but looking back we realize that things went a lot smoother than they could have. Weighing in at 5lbs 8oz ( one oz heavier than her sister), Jillian didn't have to spend a single minute in the NICU, which was really surprising since they had told us even that as they were beginning induction that she definitely would spend some time there.
We stayed a little longer than usual in the hospital, but Jilly Bean did amazing. She nursed so well and was such a trooper as dozens of tests were run on her. She had to most peaceful demeanor and quickly became a favorite among the nurses.

The day we came home was freezing!!! So we bundled Jillian up and placed her in the co sleeper next to our bed while we ate. When we went in to check on her she had wiggled herself to the middle of our queen size bed! We are still amazed at how strong she is!

I think the most amazing thing about Jillian is her smile.
This is the look she has on her face about 80% of the time ( the other 20% is the exact OPPOSITE of this! haha!). And she has been this way since day one. I remember the week after we came home my girl friend brought dinner over for us. She was holding Jillian and talking to her when Jillian gave her a sweet closed-lip little grin. "Oh my gosh!!! Did you see that?!?! She just SMILED at me!!" And Jilly continued to smile like this from that day forward.
One definition of her name, Jillian is "regenerate". Which means; "to cause a spiritual or moral reform in, to bring about a change, esp a good one, to be born-again spiritually, to restore a body part by the growth of new tissue". As if that wasn't great enough... another definition is "youthful". And Jillian lives up to this for sure. She makes people feel special and happy and just good. She is funny and light-hearted and easy going.
Her middle name is Faith. The substance of things hoped for. The evidence of things unseen...

While she loves her sister and looks up to her, she is perfectly content to do her own thing. And so when something comes up that she doesn't want to do.... she doesn't. She seems to feel no pressure to follow the crowd and is perfectly content to do her own thing. Most Sundays, before church, you will find her running around the sanctuary with that silly smile and singing her heart out. Sometimes she has a friend. Other times she does not. But neither way seems to bother her too much.
Her physical issues have definitely taken their toll on all of us. And we never anticipated parenting a child like her. I can't imagine how empty my life would be without her...just as she is. Nearly everyone who meets her remarks at her joyful, peaceful countenance. To know her is to love her. It's that simple. Only a few know what a miracle she is. And we take any opportunity we can to brag on our God. and our girl.


She is our sunshine.

Emma

I know it seems like I have writers block, especially since I made a commitment to blog something everyday. And yet I haven't written much at all.
Mostly it's because I have a bunch of stuff going on in my head and I don't won't to post a "heavy" blog.
That is why my next three posts will be about my children. They make me happy. When I think about them I smile... and I hope that when you read about how I see them, that you will smile too.


Emma Grace just turned 8 last week. When I think back to the week she was born, I remember the cool autumn air and sitting on my parents back porch drinking sweet tea. Nate and I were so young and naive. We had this parenting thing all figured out and we were going to rock it. We both loved kids, came from large families and had babysat hundreds of times. We were pros.

Our first taste of parenting and our first glimpse into Emma's personality and my actual parenting style ( as opposed to the one that would magically come upon me when I gave birth...right) came about a month or so before she was born. Let's just say I didn't take the greatest care of myself and Emma did NOT find this to her satisfaction. I began experiencing high blood pressure and some major swelling. Eventually, it was this high blood pressure that landed me in the hospital 3 1/2 weeks before my due date, getting prepped for induction. I went in on a Sunday afternoon and pitocin was started at 1 AM Monday Oct 21st. After 12 painful , and rather trippy hours of epidural-less labor, Emma finally made her appearance, red-faced and screaming and telling the world of her injustice. And oh... so, so beautiful. To this day, I have never seen a more beautiful newborn baby... and I have two more kids.

Life changed forever that day for Nate and I. Every idea about parenting we had came crashing down for what would be the first..but not the last, time. Things were rough, to say the least, those first few months as I battled postpartum depression on top of sleep-deprivation and Emma refused to nurse.

Eventually... Emma and I... we found our way. It hasn't been easy as we are so much alike yet so very different. Emma is still the most beautiful little girl I have ever seen. She has smooth, pink skin and sparkly blue eyes and a smile that will melt hearts.

Not only is she beautiful... she's smart. And I meant it... she really is smart. I'm not being all crazy like she's a prodigy or anything. I mean that she's a deep thinker. This year I have had the privledge (and the headache) of homeschooling her. While I really don't think we will do it again, I have so enjoyed getting to get a peek inside her head. Emma thinks of questions that I would never think to ask. She has a beautifully compassionate heart. I love to hear her thoughts on how we can, through Christ, make a difference in this world. I am amazed at her tenderness towards "the least of these", be they animals or little children or maybe the mentally handicapped. She shows a great wisdom in her actions, thoughts and words towards them.
She has taught me so much.
And she's funny! She loves to make people laugh, especially her dad. I can tell that for her to get an honest belly laugh from her dad is like winning the gold! And when we get an honest belly laugh from her....it is the sweetest, most adorable sound!

Emma Grace... has lived up to her name. Emma- Healer and Grace- God's unmerited favor and empowerment. Through loving her, God has healed places in me that I didn't even know were broken. In teaching her and raising her and struggling with her, my eyes have been opened to so much more of my shortcomings...yet even more of God's grace.
She is my Emma Girl.