Tuesday, October 29, 2013

All the football you can handle

Finally, the feel good post I've been wanting to do and the one the grandparents have been waiting on...
(7th grade football team)
Yep it's the much anticipated football post and if you can't feel good about football then I can't help you.
Keep your eye out for big #70...

Us with our boy after his first game...

Right defensive tackle...

And then when his game is over he goes and plays the drums in the band for the 8th grade game...yeah Thursday nights were really busy for us this fall.

These are camera phone pictures so the quality isn't too good, but here he is on game day playing the drums in the pep rally.  

I'm such a sucker for that boy in his khakis and football jersey.

Right offensive lineman...
He learned so much this year about hard work and team. This was Cooper's first year in pads so he learned a ton about football as well, he can talk it and he can play it.  This football lovin' family is having a ball with this.
I can tell you with 100% certainty that no one was happier to be out at that boy's games every Thursday than me...I'm just going to claim it now.  With all that we have been through with baby girl this fall, Thursdays were the best distraction ever.  I am so thankful for our nurse that kept SK for all but one of Cooper's games.  It was wonderful to be out in the fall air watchin' that boy play.  This is such a neat time in his life, grateful that I didn't have to miss a second of it.

Monday, October 21, 2013

Trust without borders

"Spirit lead me where my trust is without borders," we sang these words in church yesterday morning.  One of the girls on stage sang the words so beautifully and I felt them speak to me so clearly.  I wrote them down so that I wouldn't forget them.  I don't even know the name of the song, but I know those words and they can be a scary few words.  

We all sang those words and sang them out loud, but do we really want to be taken to a place where our trust knows no bounds.  Surely there is a place, a circumstance where our trust would stop or where we would question the trust we have in our God.  For the parents I know who have had to bury their children, certainly it would be understandable that their trust in God has run out or that they aren't sure that God is still in control and knows what He is doing.  For the special needs parents I know who have to deal with so much "stuff" each and everyday, our children and our hearts hurt, surely our trust would run out here in the "everydayness" of it.

It's ironic in a way though, that this is where that trust grows and deepens.  It's forged in the depths of pain and tears.  It's tested and proven in hard times and struggles.  It becomes alive and real when it meets up with life.  At least for me, trust does not deepen when things are going good and coming up roses,  maybe I am a slow learner.  It's choosing to trust God when I want to do things my way, it's choosing to trust when the world says "how could a loving God allow these things to happen."  It's choosing to trust God instead of choosing anger and bitterness, because in Him there is goodness, hope and love.

"A trust without borders..." six years ago a prayer like that would have scared me to death.  Today I understand it a little bit more, I am living it...not perfectly, far from it.  The borders of trust have been tested...God is faithful.   

Romans 15:13 "May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

Monday, October 14, 2013

His Worst Day

I know the posts lately have been difficult.  It's been our reality here and if you know me I'm not about pretending things are fine when they're not.  Well, it's been my mission to "get glad" so I was all set to get right on that when my youngest son comes home and tells me what he wrote about at school one day.  Their writing assignment was "my worst day..."  I sure hope they are writing about their best day as well, but I don't know...I got to hear about "my worst day."  Grey's worst day was the day "my sister was put on oxygen."

This has definitely taken it's toll on all of us.  I try not to think about how much all of this affects her brothers.  I want them to see that it's all OK and that mama and daddy are taking care of everything.  I don't want them to be sad or to worry about her.  I know I am doing them a disservice by wanting their lives to be all sunshine and roses.  This is where they get to know the God I know...when things are hard and it's tough and it hurts.  This is where we learn to trust and to lean into what we know.  We say we believe in Him, this is where we believe Him.  

We had a wonderful weekend.  We got SK out some to enjoy to the beautiful weather.  She has always loved being outside and that part has not changed.  It's harder to get her out, but so worth it to see the sunshine on her face and that wonderful fall breeze in her hair.  It makes me smile because it makes her smile.
I broke down and bought Sophie Kate her first pair of jeans.  She wore them to school last week.  She looks just darling in them, but way to grown up so it may be the last time she wears them, ha ha.

OK, there was a bit of comic relief concerning Grey's essay on "My worst day."  He wrote about more than one thing. Yes, he wrote that his worst day was when his sister went on oxygen, but he also wrote (and I am hoping it was in a completely different story) that his worst day was when his brother "sat on my head and passed gas after eating mexican food."  Actually that wasn't a direct quote because y'all all know that he didn't say "passed gas."  And yes he shared it all with the class...I'm so proud.  

Monday, October 7, 2013

In the stillness

The slow pace of a Sunday morning is not something I am used to. Our Sunday mornings consist of an early wake up call, morning meds for SK and then wrangling 4 kids out the door to church.  It is always worth it though to worship with our church family, to be encouraged and to be in a place where we are loved and supported.  

This Sunday morning was quite different for me, home with my girl.  She let us know Saturday evening she wasn't feeling well.  You can see her sickness all over her face, you can feel it on her body.  The only sounds this morning come from Sophie Kate's nebulizer, feeding pump, oxygen concentrator, pulse oximeter and the occasional suction machine...those are familiar sounds to us now.  I look past the machines that are trying to keep us from her.  Yes, that's how I really feel about them...they are trying to crowd us out with their bulkiness and cords running all over the place.  Something has to be moved out of the way every time we want to get to her, so we scoot and move things around so that there is a place for us beside her, with her, touching her.

I look past the machines, the medicines, the diagnoses and the demands that call me to be busy around her and I have time this morning to see her, to be with her, to hold her.  I look into her big brown eyes trying to catch them as they dart back and forth and I do.  She locks eyes with me for the briefest of moments and I talk to her and she gives me that precious have grin she is so famous for in this house. We're having church here too.

God is meeting us in the quiet of this moment as he is meeting with believers everywhere in their moments whether loud or soft.  I realize that as much as I am alone with her these are the times I long for, these are the times where I am ministered to most.  When I am not busying myself with chores and tasks around her but when I am still and quiet beside her and just listen.  There is much to be learned in the silence.

God continues to speak His truth over our family.  We listen and we wait expectantly with hope.

Lamentations 3:25-26 "The Lord is good to those whose hope is in Him, to the one who seeks Him; it is good to wait quietly for the salvation of the Lord."

Friday, October 4, 2013


"She's proven me wrong."  Yep, we heard those words this week from Sophie Kate's neurologist.  Words I never expected to hear from this man that cut us to our core four days after SK was born.  We still see him every 6 months because he knows what he is doing when it comes to keeping SK's seizures under control, but those appointments also come with their fair share of dread and cringing on my part.  

This appointment was no different especially since she's been put on O2...I knew we would have to talk about it. How much we talked about it was kind of up to me.  Did I want to ask the hard questions that have been that have been haunting me?  Did I really want to know the answers to my questions?  I wasn't sure.  

Well, he asked his questions and then I asked mine.  I couldn't even look at him for trying to hold my tears back as I asked him what all this meant for my girl.  Was this the beginning of the end for her?  And that's just the tip of the iceberg of the questions that have been plaguing me for weeks.  His response? "She has proven me wrong."  "She has done better than I ever thought she would or could given her level of brain damage."  

Please know, I have had to come to a place where diagnoses, doctors and tests results can't get to me, can't define who my girl is and can't begin to describe how beautiful and precious she is to those who really know her. I can't hang on every word from every doctor and therapist. I guess I haven't done as good of a job at that as I thought I had because hearing him say that felt so good.  

Sophie Kate looked at him when he came in and she even gave him a little smile when he spoke to her.  We talked about her seizures, her oxygen requirements and how she has proven him wrong.  Who would have thought that this doctor of all our doctors could have put a smile on my face about all this junk we have been through over the past 5 weeks.  He could tell how hard all of this has been on me and asked if I felt better about things now...I did.  

He talked about how strong she is and what a fighter she is. Yeah, those who really know and love her already know this about her, but it sure was nice to hear that from him. We have one doctor (our pediatrician) that deeply and personally cares about SK and cares about our family and connects with us on a personal level and I have sung his praises here on more than one occasion.  Our specialists though don't have this relationship with SK or with us and that is by their choosing I can assure you, so to hear this from one of them was completely unexpected but wonderful at the same time.

Sophie Kate has had a good week at school.  We are so thankful for the two nurses that have stepped up to care for her at school.  It is such a weight lifted off of me that I truly don't have to worry about her when she is at school.  We are still trying to work out all the "getting out" with her stuff.  It's not easy, but I have felt more encouraged than defeated this week.  God has shown up through your phone calls, text messages and emails and I am grateful to you for remembering our family in your prayers.  He has also shown up in quiet tender moments with just me and my girl and crazy loud moments when all our boys are home. He has even shown up through the "hard exterior" of one of our doctors and brought encouragement in unexpected moments...grateful for a God who is in the details.