Monday, September 30, 2013

Asking for prayer

One of the things that we have learned on this journey is the power of prayer.  Early on we asked you to pray for wisdom as we selected Brinkley's medical team.  We asked for prayers that he would not need a pacemaker following his first OHS.  We asked for prayers to sustain us as we dealt with being relocated.  We asked for prayer over and over again and God has been faithful.  That's why I am coming to you again and asking for prayer.  This time, however, the prayers are not for us.  The Lord has been gracious to us and I want to beg you to ask the same for some other families.  

In some ways these requests seem to be bringing us full circle in our journey so far.  When we asked you to pray for wisdom in forming Brinkley's team we did not know what was ahead of us and could not have imagined where we were headed.  God has abundantly blessed us with INCREDIBLE doctors that have often gone above and beyond for Brinkley.  In the process we learned that many of them (not surprisingly) share our faith.   During one of our PICU stays at GHS Dr. Bryan Eriksen was the resident assigned to Brinkley.  Dr Eriksen took a particular interest in Brinkley and he studied Brinkley's chronic respiratory issues even after our transfer to MUSC.  He has continued to check on Brinkley and offer thoughts about the respiratory issues.   Brinkley was under his care in the PICU a second time and Dr Eriksen came in and prayed over Brinkley with us (and Reese).  He has been a tremendous help and encouragement to us.  We have aslo had the pleasure of being treated by his sweet wife Sara Beth when Brinkley was admitted on the floor at GHS.  

Both Dr Eriksens are currently serving as medical missionaries in Kenya.  They are being pushed and stretched in their faith and their medical training.  I have no doubt that they are blessing their patients there the same way they have blessed us.  I ask you to pray for them as they are serving as senior medical team members there.  Unlike here, they do not have a team of seasoned doctors to refer to and ask for help.  You can follow their story here.  

Next I would ask you to pray for my dear friend Beth.  She and her husband, Ian, moved to Germany a little over a year ago to serve as missionaries.  They have been working very hard to learn the language and be able to communicate effectively with those around them.  Beth is currently expecting their 4th child and has run into some complications.  I know all too well how scary that can be.  I can't imagine how the language barrier escalates the anxiety involved.  The two families that generally assist them with translations are both away and were not able to go to the last few Dr visits with them.  Please pray for them that the Lord would continue to protect Beth and baby Chadwick.  Also pray for their anxiety and the communication barriers.  

Finally, we have several friends that are currently having struggles with their marriages.  This has become a common theme around us over the last couple of years.  So many of our friends have separated and/or divorced for various reasons.  Marriages are under attack and we need to stand together for our friends and our own marriages.  No one is immune to family problems and no ones marriage is perfect.  It's our responsibility to stand together and fight for our families.  

Thank you for your faithful prayers for our family.  We have seen the power of prayer in our lives and beg you to join us in standing in the gap for these precious families.  

*Please add our friend Charlotte to that as well.  She is dealing with some issues with her foot and needs to find a treatment that works.  She is trying a new treatment today.

Friday, September 27, 2013

Sit back and watch You go

Over the last few days I have seen several stories and videos about adults with Down Syndrome who are actively working and making a difference for those that they serve.  Two stories in particular have been about young men who work with sports teams.  (One story includes a young man named Brad that I grew up with and mentioned in a post a few months ago.)  One in particular was on ABC nightly news this week and was also on ESPN's E:60.  

Stories like these bring tears to my eyes.  This one in particular gets me because of something the mother says.  At one point she is talking about her son and says that he loves his life.  He has a great life.  What parent doesn't want that for their child?  (Any child, typical or special needs.)

So many times we think that people with disabilities of any type are sad and pitiful and that their lives must be terrible.  Like anyone else, their lives are what they make them.  What we let them make them.  I am challenged everyday to step back and let Brinkley be Brinkley.  It is my responsibility to give him every opportunity that I can to succeed.  It is also my responsibility to let him learn on his own.  Yes, he is a baby and there are many things that I have to do for him, but there are many things he can do on his own.  For instance, he has to learn on his own that chewing on his fingers with his new teeth hurts.  Or that swinging toys around most likely will end with the toy smacking you in the face.  

Just like every other parent of a child with a disability, I have to keep pushing on, keep providing opportunities for learning and growth, and I have to get out of the way.  After watching this video I couldn't help but think about the impact that both of my boys lives will have on those around them.  

Reese loves the Toby Mac song Steal My Show.  He sang it for quite a while in the car tonight and the lyrics immediately came to mind as I was processing my thoughts on this video.  The lyrics became like a prayer.  "If You wanna steal my show I'll sit back and watch You go.  If You got somethin' to say Go on and take it away.  Need You to steal my show.  Can't wait to watch You go, oh, oh.  So take it away."

My prayer is that Christ would steal the show everyday in my boys lives.  I pray that they would embrace what God has given them in such a way that people see Christ in all that they do.  Knowing the impact that both of my boys can make excites me as I "sit back and watch You go." 

Friday, September 20, 2013

Brinkley at 1

Weighing in at 13 lbs 11.5oz and 25.25 inches long, Brinkley has one tooth.  He is rolling everywhere and working really hard on sitting up and standing.  He loves to play with his brother and the colorful keys are his favorite toy.  Has graduated to Pediasure and is eating without his feeding tube.  Best of all, he no longer requires oxygen!

Brinkley's Big 1!

So the big day has come and gone.  Brinkley celebrated his first birthday two weeks ago.  Typically we keep birthday parties pretty low key, but I went a little overboard on this one.  All of the uncertainties that we faced in the last year seemed to help me justify making a big deal out of the little guy's special day.  I had a lot of fun making the food and decorations. 

We had a rainbow mustache theme for the night.  When our guests entered they were greeted by three tables:

We asked the guests to sign a 'stache that was added to a poster with the date .  

We gave each guest a picture of Brinkley to take home.
Of course, we had to make a shameless plug for Team Brinkley!

They may not be the prettiest, but they were good!

Brinkley's monthly banner turned out cuter than I imagined!  

This smiley banner was probably my favorite!

I had a lot of fun making the decorations, but I was most proud of Brinkley's cake.  (The frosting was a disaster.) Here's a before pic of his mustache cake.  

It was the tastiest cake I have ever made and he didn't even taste it.  He LOVED rubbing the frosting on his big brother though!  

We had a great time and enjoyed celebrating Brinkley's big day with our family and friends.  There were days that we weren't really sure if we would get here so it was well worth the extra time and energy.  I told a friend that some days this year seems to have lasted forever and other days it seems to have flown by.  Any way that you look at it, this year has been a blessing that we could have never imagined.