Thursday, January 21, 2016

I have had a realization this week about winter and why I love it...there is something about the desolate times.  The ones where death happens, the cold desolate chapters the times in life when the "real work" is being done.  These are the times before the beauty comes.  This is when the real work, the beautiful creation is beginning it just doesn't look pretty yet.

when I think back over my life.  the periods I am most thankful for are not the joyful, mountain tops.  don't get me wrong those are incredibly memorable and I am thankful for them...but the times I am most thankful are the times that are dark, dependent, and all in all painful, cuz those are the times that drove me closer to God.  Those are the times when a huge clean out happened in my heart.  Then to top it all off...these are the Chapters that produced the most beautiful change in me.

in 2016 I have spent sometime with God asking him to reveal what the next desolate chapter looks like.  cuz now as I stand close to him...the desolation even looks beautiful as I have learned that when my eyes are focused on my savior.  I see the immense beauty in the cold winters chapters of life.  The glimmering, sparkling snowy moments when the sun glissens off the ground.  Cuz beneath that top layer of brown ugliness, flowers are starting to start growth, trees roots are nourishing and deepening their roots to get ready to bloom in Spring, and Nature all around us is preparing for the chapter to come.  The process not just the end result is Incredibly beautiful.

Sunday, August 30, 2015

The night Jack lost his sight....

I felt the need to bring back the old blog today.  I have many things that have happened that i want to get down on paper during this transplant adventure.  I have realized that my once very sharp brain isn't quite as on point as it use to be.

I have been thinking a lot about last Saturday.  I spent yesterday and the past week talking to Jack about it.  Filling in wholes of the parts he doesn't remember....thank you Jesus for protecting him from feeling and experiencing what he was going through, as I prayed he wouldn't.  That evening I was so confused.  We had spent the day before laughing and even that day enjoying hospital life with Jack.  We had had a rough GI night...but everything else had been going so well.  Kidney numbers were extraordinary.  Jack's body had accepted Adrian's kidney the best he could at that point.  Things were on track to a fantastic...even speedier recovery than planned.  That afternoon his BP had been trending up but everyone seemed to be cautious but ok with it.  I was chatting on the phone with my sister in law while my mom was playing a words with friends game with Jack.  I over heard Jack say "I can't find the U nana."  She directed him with her finger to the letter.  HE repeated no, nana I can't see it.  I can't see.  Might heart sank as I went to look at his eyes.  When I saw he couldn't track my finger and he said he couldn't see me.  I bolted to the nurses station to grab his nurses.  I then started to pray as his eyes began twitching (Nystagmus in the medical world, an involuntary twitching of the eyes that may result from lack or reduced vision) and I had my mom call Adrian who wasn't with us as he had just been discharged that morning.  Lots of Dr, lots of confusion and lots of tears came.  They decided to wheel him for a CT scan.  I asked the Lord to help me give Jack what he needed to understand what was happening.  At this time he couldn't talk to me, see me, or even express how scared he was. I was at a loss for words...everytime I tried to even speak in my head more tears fell, but I felt a sense of peace like I could feel a calming presence of someones hand resting on my shoulder. I stood there next to Jack on the table, talking to him, asking him listen to my voice and telling him what was happening and that it would be ok...even though I really didn't know.  Towards the end I asked him to squeeze my finger and I felt a faint squeeze.  He slowly began coming back to us: mumbling crazy phrases, pointing to things he saw that we didn't see, and squeezing our fingers.  But he still couldn't see us.  as he began to speak to us Adrian asked if he wanted to pray...Jack said no.  but Adrian prayed anyway and Jack began speaking completely clearly to interrupt his prayer and finish it himself.  There were some distant moments on this transplant adventure that confirmed to me that Jack and Jesus are connect in a much deeper way than I could have imagined in his short 8 years.

 "Even the most confusing day opens up before you as you go step by step with Me. My Presence goes with you wherever you go, providing Light for your path." -Jesus Calling by Sarah Young
"Because you are my help, I sing in the shadow of your wings. I cling to you; your right hand upholds me." -Psalm 63:7-8 NIV

Monday, September 17, 2012


wow...I can't believe we are coming up to our one month feels like we have been doing this parenting of three thing for only a couple weeks.  if this is how fast her first year of life is going to go...this mama is not happy. Not happy at all.  :(  We got a chance to snap a few more photos the other day...
I have been debating doing every month will be interesting if I can actually remember to do it.  At least we accomplished month one.  :)  and I have a maternity picture in almost this same spot so that should be fun too.  We got a few others as well...this one really proved to me that she is filling out.  need to get out the scale today to see how much she has grown too.  

Breastfeeding has its advantages and disadvantages...but the good definitely out weigh the bad.  I have really enjoyed all the funny faces I have gotten to see, the bonding we have had together and the fact that while I am feeding I am not responsible for anything other than just taking care of Miss Teya.  :)  (I use this to its full advantage for sure!! )
this is a favorite face for sure.  I have also gotten to catch a few smiles too...those ones where you truely wonder what they are dreaming about cuz they are followed by some sweet little chuckles too.  I have really enjoyed Teya's first few weeks.  I am not sure if it is just normal and so I can enjoy it or if things are just going so well...either way I will take it.  I enjoy holding her, singing to her (although Jack has kinda taken this over for me), taking walks,and may other things.  the joyous things that I don't enjoy much are the mounds of laundry, the nights she decides that 4-5 hours awake in the middle of the night sounds like a great idea or she decides to wake up minutes after I have gotten her sister back into bed.  Oh how fun it is to have life with three.

she still has all her dark hair
eyes that are dark but starting to look a bit blue
weighs: 7lbs 6oz
height: 19.5 inchesb
enjoys baths, cooing, her brother and sister are much entertainment and she loves to be held by anyone...but if she is mad she likes her mama.  Can't wait to watch you grow in month 2 baby girl....

Tuesday, September 11, 2012

Welcome to the world Teya Claire!!

well on August 16th we welcomed our third child into the world...and I really wish I could say that she did it drama free...but really would you all believe me if I did.  :)  On Tuesday the 14th we had an abnormal heart beat....on the fetal monitor and so they had me sit for a one hour NST (non stress test) to see if she was just moving too much to catch a consistent beat.  They could hear on that that it was irregular and that is common in fetus' at the end of pregnancy...but only if it returns to normal on its own.  so we did an ultrasound to make sure she was healthy and that blood flow was still good....and all was but they wanted to monitor me til it returned to normal in the next hour or so...or we were going to have a baby.  Not quite as shocking hearing that this time as it was last we were an additional almost 4 weeks along than we were with Avenlea when I heard the words.... "you ready to have a baby today".  I have to say matter when you hear those words when they are not makes my own heart skip a beat and my brain immediately responds by shooting up a prayer.

As I sat in the triage of the OB floor...(cell phone signalless) I said many a prayer that all would work out.  We would have a healthy baby, we would have doctors that we trusted in delivery, that she would be in great hands when she was born, that we would be able to hold her and comfort her first crys, that she would stay with us and not be taken away, and that ultimately God knew the plans he had for her and that His will would be done.

well heart beat went back into normal rhythm and they sent me home about an hour and half later...and I was baffled, nervous and not sure what to do.  I was worried more than I could imagine and also not sure what the plan was from here on out...and for those of you that know me...I deal ok with chaos...if I have even a vague plan of action.  well I spoke to my doctor that night and we determined that we would make a decision after the NST in the morning.

So at 9 am I went in for another NST and all sounded great.  My prayer was still the same and God was still answering my calls...the docs on call that day were not the ones that I trusted from past experiences and He new me and my baby would be better waiting another day.  After my OB conferred with the Neonatologist and her fellow OB's....we determined that we were all ok with delivering a week early at 38 weeks.  So the plans were set up for us to arrive on thursday morning around 8:30.

 I couldn't have asked for things to be better....I new and trusted both OB's in the operating room, the neonatalogist was a friends aunt and a wonderful doctor, the anethesiologist was exceptionally gracious and helped me through some trying reactions to the drugs in the operating room, the nurses kept us all in great spirits and I was surrounded and supported by my family.  First child I was able to have my parents here for the birth of...and it was wonderful to come out of recovery to see my wonderful husband, mom, dad and mother in law all there when they handed me my baby girl to take back to my room.  I can't even put into words the joy that I felt when they told me that everything sounded great with her heart.  THANK YOU GOD!!

and here is our beautiful baby girl....

Friday, August 10, 2012

My Tiny Miracle baby is growing up too fast!!

Five years ago today...i gave birth to a miracle.  After a very emotional and stressful pregnancy...I was blessed with the cutest little boy a mama could ever imagine: missing a few parts and a few that were in the wrong spots...but cute as a button.  He had some challenges...but has come through them with a spirit than can be matched by nothing.  

I still remember the day we got to bring him home.  We were elated even though nothing was ready for him...which was fine...cuz really nothing in our new life was really normal the supplies we needed we really had...the hospital sent them with us.

it is fabulous so look back at the days at the beginning of his life....but the best part was thinking about all the things we were so concerned about in those early posts...that he has overcome today.  We had Adrian's Grandmothers funeral yesterday.  I got to watch him run around with his cousins and play.  yet I sat there thinking wow...a few years ago...we were wondering if he was even going to walk...much less run...and look at him today.  We also got to see Grandma's sister Dorothy who was telling me how Jackson has been on their prayer list at their church for so long...and we were thinking probably since the beginning so 5 years...they took his picture so they could show everyone back in Kentucky how he is doing today.  There have been so many moments like these and we give all the credit to God.  it is through all  your prayers and his power that Jackson is doing as well as he is today.   He, God, has placed all the right people in our path, the right doctors, therapists and the GREATEST group of FRIENDS and FAMILY who have been there to support us through it all.  We have no words that are a big enough Thank you for everything you all have done for us and for Jack!!  

A few 5 year pictures:

look for more photos from his party on Sunday sometime next week...until then we are enjoying our great 60 degree weather for his bday...I think we might head out to the park this afternoon.  :)

Tuesday, July 24, 2012

poop poop and more poop...potty training at its best!!

well we have all been enjoying our summer...well as much as you can in 100 degree weather...We have appreciated the rain we have received the last few weeks.  I also have to say we have enjoyed the good run of no surgeries for has been over a year since Jackson's last surgery and we can not Thank the Lord enough for his continued stable health.  He truely is a testament to God's goodness and promises.

we have been working on potty training for the last year.  Jack has done remarkably well despite mom and dad's frustration...he has almost complete knowledge of urinary urgency...however when He says he needs to better be where you need to go...or find a local tree...cuz he can't hold much.  HOwever we have been told this can be trained to work later through biofeedback training.  HE just needs to be a bit older.  We are so super excited for this news.  I think you all remember my tears after his last surgery when they were saying he might have to be catheterized ever so many hours....not what i wanted for my baby...and I am so very thankful that we will not have to do that.  So, that brings us to what we do have to do...

do to Jackson's imperferated Anus...he was not born with all the muscles that the rest of us have.  The Doc's have been super excited that he is able to get formed poop out of his butt hole at all...that is how little muscle he has down there.  So we were optimistic at the beginning and we gave it a good run...but I have been persuaded to go for what they call a MACE procedure.  the frustration and disappointment for Jack was too much to take and was starting to lead to things like lying cuz he thought he would get in trouble for a pooping accident...not easy for a 5 year old to separate.  We contacted his doctor about a month ago now and she has gotten the ok from all of his other doctors and we will be going ahead with this procedure this fall.  (I was actually shocked when they called we could have gotten in in August...however not knowing what is happening with this babe...I am not prepared for recovery and a new baby at the same time).  So we will plan it for late September or Early October...we want him to avoid being the stinky kid as much as we can and give him the best life we possibly can.

the MACE procedure will be another port on his stomach (it is completely reversible for when they learn to create new sphincter muscles some day).  We will do an enema in this sight and then he will have to sit for 1-3 hours on the toilet waiting for it all to come out...but then he will be cleaned out for the day and will only have to worry about going pee while he is at a school.  We are a bit concerned for the wait he doesn't like to sit for any amount of time on the we are working on some solutions to pass that time...possibly even getting him a device (IPAD or I TOUCH) where he could watch movies, play educational games, doodle, etc.  So we will see...maybe it will be what we ask for for Christmas from everyone.  they can just donate to the Jackson IPAD fund.  :)  We will do what we can to make it so it doesn't interfere too much with his daily that is the point of choosing to do the procedure in the first place.  We would love to have prayers that it is 100% successful and that we don't have the complications that con come with it...and also the transition for me as a mom, that i can have the patience that is needed to mother three and do what is needed to support Jackson in this new adventure.

MACE  here is a link that descibes the procedure...

thank you always for all your love and support...we would never be where we are with all of this without it or with out our faith in the Lord!!

Tuesday, July 17, 2012

Anticipation or Anxiety...

I find myself full of emotions lately as we enter week 34 of this baby girls pregancy.  Lots of memories have come back, some good and some of those feelings you wish you never would remember as they are gut wrenching.  Both Jackson and Avenlea were early arrivers...both in drastically different ways and for very different reasons.

I think I am more reminded by Jackson's birth as I have been chatting with other individuals who have been expecting babys in the next few months that are expected/known to have medical issues.  it is such a struggle even having been there to have the words, to know how to reach want to be helpful...not intrusive. Most of the time...I still don't have the I have been there an I know how helpless you feel as they wheel you babe off to surgery at hours/days old.  You know God is in control...yet at that moment nothing seems to bring you comfort.  However, I do remember the amazing feeling that came over me as I witnessed friends and family praying for Jackson or for us.  I also look back an I can see God's hands on him an on the amazing support we had all around us.  I got to watch Jackson be prayed over just last was amazing to see him beem as a man he had never met before prayed for him and called him by name as he asked God to heal his little body.  In that moment I new God and Jackson had chatted, maybe even met already.  On our way home that day Jackson had lots of questions and I love that these conversations have opened up between us.  I feel this will definitely help us as we approach his next surgery.  I don't know if its the arrival of baby number three, the mega pregancy emotions or the idea that we have made a HUGE decision to go forward with another surgery for him...but Jack and his health have been on my mind alot lately...more to come I promise about Jackson's progress and what is next for him.  (that is another post).

Avenlea's birth was a bit different and could so happen again.  I find myself getting anxious and watching for signs of water leakage at every trip to the bathroom.  I find myself anticipating with excitement and also some there are so many unknowns.  As much as God and I chat about how he is in control and I know from experience he doesn't give us more than we can handle at one time, I still find myself worrying about the what ifs...I know I think I more than anyone...would have stopped that right??  Yeah no!  It is simply hard to wait to just see what happens.  I remember three years ago being so shell shocked..which sent me into a tailspin when we were told Avenlea was going to be born that day.  (I apologize for those that came to visit...and just watch me cry)  Being so unprepared made me feel helpless...but then on the other hand we still I think didn't believe everything was healthy or going to be alright...and yet it was...she has grown and developed exactly the way she was suppose too.  Yet it made her birth just a bit more traumatic.

So baby girl on the way (yes I know...she still doesn't have a name)....I feel so ready for her...she has a nursery, a carseat, two siblings that are waiting for her with tons of love and attention to give her and a mama that is so excited to meet her, yet wanting her to grow as strong as she can before she chooses to come (despite the puking 2-5 times a day...and sometimes more).  I pray for her everyday and pray for me...that I will be prepare by God for the emotions of her birth and for the physical demands of taking care of three.
I appreciate all of you that have prayed and our continuing to pray for us....this is a bit of a ramble and for that I am sorry...I just wanted to get my thought this morning down in writing...

And when there's no way to feel better in the moment, we have to place our feet on the only solid ground there is—God's truth.

His truth won't shift with feelings.
His truth won't drown in a sea of tears.
His truth won't leave you even when your gut honest cries don't sound so Christian.

totally needed this reminder from my morning devotion this morning.  I am so blessed to have a faith to lean on in times of emotion and struggle.