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.  

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