A Restful End

Wow has it been a whirlwind of a week.  We drove up here early Tuesday morning for the first therapy evaluations, checked into the Ronald McDonald House, went back for more therapy evaluations, somehow fed the children in between, went back to the RMH for dinner and loaded Daddy, Jacob and Hope up in the van to spend the night with some local friends (since we only had room for four of us in our room) and had a bit of a fitful and restless night.

Woke up Wednesday morning, still trying to get our schedule down.  Quick breakfast, therapy was bright and early, we were behind all day long for some reason and that day wasn’t any easier or slower than the last.  Jake had to drive back home for work during the day, lots of craziness and optimism about how therapy would go.  Got to check into a bigger room so we could all stay together, moved everything out and over.  More business, a little better sleep.

The day before last we had another very full round of therapy sessions, lots of coming and going and trying not to be late.  Did I mention it was SO COLD this week?! Of all the weeks to have below freezing temperatures the Good and Gracious Lord decided that this was the best week to do that.  I love Him, but I just don’t understand Him sometimes… Getting five children and two wheelchairs in and out of a van multiple times a day when it is so cold is… a growing experience, let’s just call it that.  It’s an exercise in being thankful and learning to appreciate the good things.  Right?  Right.

Then Jake had to leave that night to go back home again, and we had a break from therapy yesterday morning, a bit of a breather, or so I thought.  Stephen woke up very sick and with some concerning symptoms.  My bestest friend in the world who is coming to stay with us and help out this month (YAY I AM SO EXCTIED!!!!) had her flight delayed by about seven hours and I was just telling myself that God was in control.  Somehow all crises were averted and all therapies took place and Jacob took his first ever independent step and we seven, tired and sick and stressed, piled back into the freezing van to come back to our “home away from home”.

And then a quick dinner and good-byes to Daddy again as he left to do the Epiphany service (a blessed Epiphany by the way!!) and then Candy Land and bedtime stories and cuddles and sleep.  And another long evening of being alone.  It felt like I should have been sitting at home with some sort of delicious celebratory dinner and giddily (is that a word?) talking with my hubby about how our son is going to walk and how proud I am of him and what amazing things this will open up for his life.

Concordia Seminary 2009

Concordia Seminary 2009

But the anticlimactic ending it is.  Restful, quiet, peaceful, but nothing exciting or fitting (it seems) for the miracles that are unfolding in front of our very eyes.  We have heard more than once, from more than one person, that if Jacob ever walked independently it would be a miracle.  And I agree.  Yet, I will have to probably wait until the end of the month to actually go home and soak in all the goodness that’s happening, to have that celebration with our family and the love of my life.

As for today, I woke up the usual way, by my adorable little alarm clocks that God gave me.  It’s still dark, the world isn’t as awake as my children are.  I’ll get them all dressed and fed and we will head out the door to go meet Daddy at home.  It’s the weekend, no therapy tomorrow, as Jacob says it’s a “rest day”.  I will get Evangeline and myself ready to go and say good-bye to a dear friend of ours.  A sweet lady who sat behind us in church for the last three years and was always ready to greet us with a smile.

We went and visited her in the hospital on Christmas, and she told me so many things I hadn’t known before.  We showed her how Jacob could stand up all by himself now, and she was so happy.  She said that she had been praying for him to walk since the day we brought him home.  She said such kind and lovely things about our family and blessed me more with her words than she could have possibly known.

Such a lovely woman of God, and it seems so anticlimactic to end the earthly life of such a sweet soul with a funeral and a burial… There is nothing exciting or breathtaking happening today, just a quiet, fleeting good-bye.  Yet, even now we see, dimly and through a dark glass, but we see.  This isn’t really the end, not yet.  The celebration is yet to come.  The Resurrection is nearer now than it has ever been, and that will be anything but anticlimactic.  Her life is not over, it is safe and hidden with Christ, and though we are not celebrating today, we will be soon.

Today we give thanks for a restful end, and we await the glorious culmination of the promises to come.  One day soon we will have that greatest of all celebratory meals, with all our family, and with our One True Love.  We will be home, and all will be as it should once again.  For now, we rest and we wait.  We wait even more anxiously than before for the coming of Christ.

May your weekend be restful and quiet and filled with the love and mercy of our Lord.

Therapy Therapy Therapy

Today I promised you I would talk more about the therapy program we are doing.  It’s pretty cool actually.  I have known about it for a long time, but we were just now able to get accepted into the program; we wanted to have Jacob and Hope do it at the same time (for which, the reason should become quite obvious as you read on), which meant they needed two open spots, which is even harder to get.

Fortunately for us they had just hired a new physical therapist and she had a totally open schedule, so they booked us right in!  The therapy program they have here is amazing.  They have great equipment and very experienced pediatric therapists who are used to the complexity of Jacob and Hope’s needs.  But because it’s a bit of a drive from us, it’s not been at all reasonable for us to do our weekly therapy here.  At the same time, the therapy close to us is not adequate in any way for the kinds of things our kiddos need.

The intensive program has been a godsend for us.  Jacob gets 2-3 hours of physical therapy every day and Hope gets one hour a day (she can’t tolerate quite as much).  Not only does this allow us to fit a lot of therapy into a shorter time frame but it also helps build new habits, because we are working on them daily.  Whereas before, in order for Jacob to progress I had to be working with him at home constantly.  That was not a good situation for our relationship or for the family in general.

In addition to physical therapy they are both also receiving speech therapy and occupational therapy while we are here.  So that totals to 2-3 hours of therapy for Hope each day and 3-5 hours of therapy for Jacob each day.  It has been so amazing.  This is only our third day and already Jacob has almost taken his first independent step, he jumped for the first time ever, he learned how to do buttons and we are tweaking all of his equipment and supports so he’s walking much better too.

Hope was tall kneeling earlier today, which was SO cool!  She also used an communication device to ask for more bubbles (she presses a button, the ipad says “more”).  She used it at least twice on purpose!  They are so happy with how visually attentive she is and are optimistic about her ability to learn to communicate her needs.  We really couldn’t be more thrilled with that.

While we are doing this marathon of a program we are staying at the Ronald McDonald House (which is just so amazing).  I had no idea how much their organization does for families!  We are being so well taken care of here, and I would definitely recommend to everyone to go donate or volunteer at their local Ronald McDonald House Charity.  They found us a room that actually accommodates our whole family.

My dear husband is staying with us, because it’s just impossible for me to juggle all five kids and the therapy schedule without him here.  He goes home some nights and days because there’s obviously work he can’t do here, but when he is here he stays up late getting his “office stuff” done and he wakes up around 4am to work some more.  I have no idea how he does it.  He is my hero for sure.  And I miss him because he went home last night for more work and he won’t be back until this afternoon.  Not that I can possibly complain with everything there is to be thankful for!

Volunteers come in and cook one hot meal every evening and sometimes brunches too on the weekends.  They also stock their pantry with cereal, oatmeal, bread, peanut butter, popcorn, snacks, drinks, etc.  And they have a fridge and freezer full of leftovers, so we can eat all three meals a day here.  They also have a full kitchen we are welcome to use and cook in whenever we need to, and our own little pantry and a fridge we can use.

They have two family rooms with TV’s, toys and games and they have a library room too!  They have a little playground outside, and a play area in the dining room as well.  The hospital has a shuttle we can use to get from therapy to the house and back when I don’t have a vehicle, which has saved us a couple of times, although it only fits one wheelchair so we do have to work around that.  The staff have all been so wonderful and I have no idea how we would be able to manage this month without the help of the RMH.  We are just so blessed to be here and so thankful that God has provided everything that we need.

The therapists have mentioned that, especially for Jacob, it seems like we came at exactly the right time in his development, just as he’s learning to stand independently.  And for Hope, she has just hit her emotional stride to be able to handle an intense therapy program like this.  The timing couldn’t be better for either of them, and our Lord had it all planned out so much more perfectly than I could have.

I won’t bore you with more updates today (my husband seems to think that my posts are too long, but I tell him that about his sermons so I guess we’re even… just kidding, love you sweetie!!) BUT I do have some pictures!!  Enjoy!  And if I can I will write a little more tomorrow. :)

 

Ball Pit

Kyrie joining Jacob in the ball pit during occupational therapy.

 

The kids checking out one of the family rooms at the RMH. Can you find all five? :P

The kids checking out one of the family rooms at the RMH. Can you find all five? :P

 

Jacob at physical therapy in the "cage" learning to jump for the first time!

Jacob at physical therapy in the “cage” learning to jump for the first time!

 

Practicing buttons at Occupational Therapy. It only took him a minute to do all three!

Practicing buttons at occupational therapy. It only took him a minute to do all three!

 

Hope tall kneeling at a table for physical therapy!! I can not believe how far she has come. <3

Hope tall kneeling at a table for physical therapy!! I can not believe how far she has come. <3

Love to all!!

EDIT:  I have no idea why all my pictures are turned the wrong way.  I fix them on my dashboard and they are correct in my editing box but then when I publish they’re all backwards again.  So… if anyone knows what my problem is let me know cause I have no clue. Haha

2nd EDIT:  FIXED!! Now they’re all backwards in my editing box and the right way on the post.  I feel like I’m going crazy, lol!

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