Sunday, April 24, 2016


Wow, what a difference a week can make.  I last left Texas on April 13th.   My Dad had finished cyberknife therapy on April 6th.  He was still sleeping a lot and complaining about being tired.  On April 21st my daughter and I flew back to Plano.  Well,  my Dad is doing much better.  He is driven.  He is up painting the house and repairing screens from the 2 hailstorms that came 3 weeks apart in March and April.  He is taking walks by himself.  He is eating more than I have seen him eat since January.  Praise the Lord!   It is amazing to see him this way,  on Thursday he worked for almost 11 hours straight.  Hard to believe.  So thankful for this season in his life right now!  It has almost been 3 months since his diagnosis and we couldn't have imagined this now.

My stomach has been having a hard time with things my Dad likes to eat.  Kidney, heart, liver, pig ears, pig feet,  tripe.  I love going to 99 Ranch, an Asian's dream grocery store, to shop for him.  My kids notice that 98% of the people that shop there are noncaucasian.  I feel right at home and my husband loves the cultural experience.  Michael and Phoebe also feel right at home.  The store also has this yummy bakery, again it caters to Asian tastes, and it is not too sweet and has treats usually sold in Asia.   There seems to be  Asian oasis' around the Dallas/Fortworth area as the population here is much greater than the Swedish/Norwegian culture in Minnesota.  I have heard however that the Filipino stores are in southern California and you can get the elusive calamansi fruit that is wonderful on filipino dishes...

I also wanted to blog on the Celebration of Life service for Dr. Karyn Purvis.  It was truly an inspiration and blessing to be able to attend.   Karyn changed my life for the better in 2010.  I first heard her speak at the Christian Alliance for Orphans at Orphan Summit in Minnesota. Little did I know that her work would come to mean so much to me.  A year or so later, my kids behaviors escalated from the boundless exhausting energy and John and I sought more information on her work.  We attended a conference in Tennessee the next spring.  Changed our lives and mode of parenting.  She presented scientific information that blew us away, otherwise we would have never thought about changing our ways of parenting.  I was able to attend her professional training in Fort worth that fall and came back with my heart full of what God intended for connection in human relationships.  I was also able to hear and talk to her several times more in the last few years at various conferences.  Also, inspiring and changing me to be a better person and parent. Our great God has used her mightily not only in our families but in thousands of others.

I thought that the service would be packed to the rafters as she has touched countless numbers of people throughout the world with her work.  Surprisingly,  there were probably about 250 in attendance, but I know many from all corners of the earth would have loved to have been there.  I felt special as one to attend personally.  Elizabeth Stryffe from Saddleback church opened in prayer,  Steven Curtis Chapman sang(he is really talented and ministering when not in concert), Dan and Teri Coley and Michael and Amy Monroe from Empowered to Connect read scripture.  The provosts and deans from TCU spoke about her work and the essence of who Karyn was along with some funny stories about her.  She was a gifted fund raiser and had a really dry sense of humor.  Her boss said he was the one who did her evaluations, evaluated her work, and decided pay but he also said, we knew who really was the boss.  The service and following were elegant and stylish, so much of whom Karyn was as a person. The best part was hearing her eldest son speak personally about his Mom.  Dr. Karyn herself came from hard places and she worked hard to answer God's calling in her life.  She didn't start the professional work with "children from hard places" until she was done raising her sons and sending them to college.  Dwayne said it was a dark time in her life at the age of 47 when she went back to school.  She had to take statistics twice before she decided it was no longer leprosy and then finally aced the course the 3rd time. She wasn't about being an academic but she knew it was the means to an end which was getting across to people how to minister to those from "the hard places."  You knew that her son loved and adored her immensely.  She was authentic.  He talked about the last 3 weeks of her life when she could hardly walk and words and thoughts were difficult for her.  She was like this for 2 weeks and then she had a very important meeting regarding continuation for her work.  Dwayne said she got up, got dressed, put her makeup on, and with 2 men helping her walk to the meeting,  she was on, coherent, articulate, and clear for 90 minutes just like the Karyn we know and love.  He then said she went home and went to sleep for the last week of her life.  It was really nice to meet with her colleagues again,  talk with Jim, and get a tearful hug from Henry.  Henry and I really got along well as we both deal with sensory children at home.  Another great blessing was talking with Taylor, who had nothing to do with TBRI, as a student she knew Karyn was knowledgeable in fasting and prayer, she asked Karyn about that and so one day they met at the Einstein bagels near campus and Karyn mentored her about prayer and fasting.  Many people do not know the deep spiritual side of Karyn.  Dwayne wanted everyone to know that every time before she spoke she secluded herself in the ladies room,  raised her hands to the great God we knew, and begged that he would give her the words to share.  Her celebration of life was exactly who she was,  understated, elegant, stylish, creative,  and guilty of extravagant love. Her life work will affect countless numbers even after her death.  My prayer is that I myself and Y'all will be guilty of this "extravagant love" by the love of Jesus.

Monday, April 4, 2016

Here, there, where?

It's been awhile.  The good news us that my Dad is doing very well with his cyberknife therapy.  Very little side effects.  He has left his "stay in bed feel too weak state."  With that comes it's challenges but we are so happy he is doing so much better.  He has 1 more treatment today, Monday April 4th. I am just amazed.  I admit I was worried it would be more difficult but he has improved instead of getting weaker.  I pray I am not getting ahead of myself as we have 1 more time left.  We are very thankful as we have gained quality time with him.  Please pray with us that this treatment will enable him to be free of the pain medicine he is on so he can become more independent.

Honestly, this journey has been difficult.  Time has stopped for us like many on the chronic illness journey.  The benefits are that it causes razor sharp focus on what is really important to you.  I have become ever more dependent on the grace of God alone.  I bank on the promise that He has not forsaken me.  I am tired of travelling away from my home even though I live my Dad dearly and want to do the best for him.

This disease has huge costs.   Not only resources but the effects on my own family.   I was away 20 days in February and 21 days in March. This coming April I will be away from home 22 days.  Both my children have become more anxious and emotionally distraught at the drop of a hat.  Dad and Mom have less margin for getting upset also.  Too many details fill most of my days whether it is medication or schedules, details of the next flight, appointments, nutrition, and so on and so on.  Then there are emotion filled days of despair, hope, loss, all those that accompany the passing into the eternal world, and watching your loved one suffering.   It doesn't mean that this will happen soon,  it is just what it is like to have that reality right in front of you.  Life is lighter when we return to our home,  but often distracted.

Today, I started an IV on my Dad to hydrate him for the therapy.  I was saddened to see that the last IV caused bruising and purpling...the last nurse was not gentle in her application, and it was a huge vein.   I am not blaming,  but there are so many skill levels in the professional world.  I myself experienced it in my medical journey.  It is just so hard to see this with my Dad.  I ache for eternity during these times.  My Dad has tough veins,  they move, his body is so sensitive to needle sticks now that the veins just flatten and disappear,  he is dehydrated.  Only by God's mercy was I able to get the iv  in one shot,  but it hurts me in a different way than if it was not by Dad.

I do not want to end this post in a down note.  We have experienced so many extraordinary graces.  I dropped my dear Phoebe off at respite care this morning.  She will be in a home for a few days so I can tend to my Dad without upsetting her further.  This time has been tough on her, and I cannot give her what she needs which is tight structure and high nurture.  She is in a home with an "elite Mom", one who has parented biological children and 23 adopted children.  She is amazing and experienced with children like Phoebe, so her healing journey can continue and I won't feel so overwhelmed.  She gets to work on things she struggles with in her life currently and not go backwards on the skills she has gained over the past year.  That is one extraordinary grace.  The other is I just booked 2 future roundtrips for MSP/DFW for my family and the 2 dogs for 406 dollars.  That is a steal if you ever fly and with pets.   Spirit airlines has proved to be a huge provision for us during this time.  You just need to be smart on how to fly them and deal with occasional delays.  Number 3, people bringing meals to us both in Texas and Minnesota.  Number 4,  John's Dad willing to come and watch Michael for a week before his own vacation so Michael can stay home and practice on his gymnastics team,  do speech therapy, and another group class.  With John's schedule,  childcare is not straight forward, so this is HUGE for us and a blessing to Michael.  Number 5,  collision damage loss waiver insurance on a credit card that I didn't know about and used to pay for the rental car which paid for hail damage to our rental car.  The same day we got socked with a foot of snow in MN,  we got a huge hailstorm in Texas which inflicted those small dents on the rental car.  There are countless  things that we have been graced with that I haven't written about,  including being able to spend time with siblings, and appreciating the gifts we have to offer during this time.   Yes,  we are not forsaken,  but have much to be thankful for. We continue to covet your prayers.