This month is already flying by and I’m not quite sure where the days have gone.  The kids are all going great in school getting all A’s and 1 or 2 B’s which is a blessing.  Neither of the boys are in sports right now but Sidney is full force in volleyball.  Unfortunately she hurt her left knee this week and had to see an ortho doctor Friday; she is now scheduled for an MRI tomorrow morning to see what is wrong.  She is also on crutches because she has such a hard time full weight bearing on that leg and her quad muscles are so weak her knee is giving out on her.  Needless to say, she is devastated at the thought that volleyball might be over for a while; she really loves her club and has a lot of tournaments coming up. 

On Friday Travis, Ryan and I went to Omaha for a palliative care consult at Children’s Hospital.  I talked about this in the last post, but let’s just say is was an emotional meeting but very good.  We were there for two hours, at first meeting with the doctor and a nurse then in a conference room with seven other people.  We talked about everything from our goals for Ryan to how long we think he will live to how we want things handled should a crisis occur.  It was a very frank conversation and one we have never had with a medical professional before.  Most people avoid the topic of what Ryan’s future might look like but in this meeting it was discussed in great detail.  What struck me the most was the doctor, who works in the PICU, said several times that he has never seen a child like Ryan.  He expected Ryan to be a vegetable saying most kids he sees who have the extensive seizure history Ryan has with over 16 medications tried, four brain surgeries and 25% of his brain removed would not even be alive by now and if so, they would be vegetables.  It was a shock to hear because I don’t think either Travis or I had ever considered how much worse he could be.  They all simply couldn’t figure out how Ryan can be walking and functioning with all the seizures and brain damage he has.  He is definitely living life on his own time table and as we keep saying, he has changed the world exactly as he was sent here to do.  He is exactly as God intended him to be and when our Heavenly Father decides to take him home, he will do it.  Until then, we are now able to focus on Ryan’s quality of life without feeling pressure or guilt because we won’t try new things or revisit old meds and diet changes as we have in the past.  Now we have an army of advocates behind us who will rally around us and communicate to the other doctors letting them know our wishes and goals for Ryan.  So when the next procedure, surgery or hospitalization is necessary, we will have the support we need around us. His seizures are definitely getting worse and the tonic clonic seizures are so strong now they sometimes knock him to the ground.  I love this passage because it says exactly what I believe to be true ~

Ecclesiastes 3:1-14

There is a time for everything, and a season for every activity under the heavens: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to  laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.

What do workers gain from their toil?  I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.  I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil — this is the gift of God.  I know that everything God does will endure forever; nothing can be added to it and nothing taken from it.

Otherwise things are good. Life just marches on whether we want it to or not.  I’m looking forward to spring and planting flowers already although I know we have quite a bit of winter to get through.  Once the new year finds us, I start getting excited for things to liven up and for all the beautiful colors that are coming.  And we finally have our summer vacation plans ironed out.  Originally we were going to spend a week in Rodanthe, NC, part of the Outer Banks, but we heard last week that the house we rented will not be repaired in time due to the damage it sustained from Hurricane Sandy.  So in our rush to find another house, we ended up moving our vacation to Folly Beach, SC, about twenty minutes from Charleston.  There will be more to do and from what I’ve heard, Charleston is a beautiful city to visit.  Thankfully we were able to find a beautiful house right on the beach so we can sit on the deck and see the kids playing in the ocean right in front of the house. It’s always been a dream of mine to stay in a house directly on the beach so I am really looking forward to this time away from the real world. We are going with my dad and stepmom and also taking Lyndsey, our respite provider, with us.  When we want to do something with the older kids that we know Ryan won’t be able to handle or if we will be outside all day, Lyndsey will be there to stay with Ryan so the rest of us can go have fun. She knows how to handle all the medical stuff Ryan needs and we completely trust her.  She is like family anyway and I’m sure we will all have a blast relaxing and finding fun things to do.  I’m ready to go tomorrow!

We still have all our fortieth birthday decorations hanging in the house since we had a wonderful party last Saturday organized by Sidney.  There were around fifty people here and we were blessed with such wonderful company.   I have to give a huge shout out to our parents for helping Sidney with all the food and decorations. Thank you! My birthday is Friday so there is still one more birthday to celebrate then we can move on to something else and take down all these decorations that remind me how old I am getting!  I can’t wait for the girls’ night I get on Friday with my best friend.  Our families are going out for dinner in Omaha then Shell and I are heading to a hotel to talk, laugh and cry all night.  It will be fun and the last time we did this we didn’t go to bed until 5 am! 

Thank you again for your support of our family.  We covet your prayers and are blessed by your kind words and gracious hearts.  You are all loved!

3 thoughts on “time

  1. Thinking of all of you as you transition to another plan for Ryan. It must be hard to think about, but perhaps a relief to know that you have done all you can. You all are so marvelous with Ryan. Continuing to pray.

  2. Your little woman is such a sweetie to organize the party for you! Happy early birthday, I’m right behind you. Hoping you get ok answers for Sid’s knee today. Chris gets just how she feels though he had to laugh a little about the crutches since she gave him such a hard time! I had no idea you were planning the Outer Banks. David has been planning that for us this summer too but the Hurricane has made us rethink. We were going to do the Outer Bank and then drive up to DC and spend time with our friends there. SC sounds super fun!

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