Saturday, June 10, 2017

A Broken, But Mended Heart

    A busy week is an understatement.  I will never schedule 9 appointments in one week again.  Even if some of them are two therapists seeing Asher at the same time.  It was also the week our church had Vacation Bible School.  I also had a few meetings, work, keeping my kids alive, you get the picture. 
    On Monday, Asher went to the cardiologist.  We were hoping his heart defect had closed.  It in fact has not, and will likely need to be repaired within the next year.  The well meaning cardiologist asked if he is enrolled in early intervention.  If you are close to me at all, you know why I found this hilarious.  I left disappointed.  Many people, including us, were praying for healing.  Healing would have made such a great story.  When I got into the car, the song "Even If" by Mercy Me was playing. Here is how the song begins:


They say sometimes you win some
Sometimes you lose some
And right now, right now I'm losing bad
I've stood on this stage night after night
Reminding the broken it'll be alright
But right now, oh right now I just can't

It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

They say it only takes a little faith
To move a mountain
Good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't

My hope is You alone

    We've been praying since before Asher was born that he wouldn't have a heart defect, and when one was detected that it was healed.  Well, about 50% of children with Down syndrome have heart defects.  Asher had three when he was born.  He now has one.  The one he has will most likely be repaired thru a cardiac cath instead of requiring open heart surgery.  We are incredibly thankful for that and hopeful that the procedure will be successful.  The song continues:

You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't

My hope is You alone

    We invited one of Addison's friends to come with us to VBS this week who doesn't attend our church.  Ordinarily, I would have offered to take her friend to and from VBS with us.  When her friend's mom offered to split the carpooling with me, I gladly accepted, which is unlike me.  She drove the girls the day of the cardiology appointment to VBS, which allowed me to not rush and arrive early to the appointment.  I even had time to make it to the grocery store before they came back!  When I am at the grocery story with only one of my children, I always try to smile kindly at the moms who are pushing around three or more children, especially when the children are acting wild.  I don't have time to smile when I have all of my kids.  I am sure those moms think, why is that mom smiling, she has no idea, she only has one child.  Of course my five year old asked her to stop at Sonic on the way home and buy them all lunch.  




    After they got home,  I took all three kids to the dentist.  I was hoping to get some advice on strategies to help us brush Asher's teeth, since he hates it and we have spent the past month or two working with his speech therapist and occupational therapist to avoid long term problems with this.  I brought all of his special toothbrushes and speech therapy tools and showed them our whole routine.


Of course he opened his mouth like it was no big thing.  I did get a little advice, though.  And...found out my seven year old needs braces...like next week😳.

    We also had four therapy appointments and an appointment with the Early intervention service coordinator this week.  For whatever reason, they all fell on the same day--Wednesday.  One of the therapist saw him at school that day, but I was with him for all the other appointments.  Amazingly, Asher remained in a good mood throughout all of it.  

     This also happened to be the day to do the six month review of the IFSP (Individual Family Service Plan) which is kind of like a precursor to an IEP.  It has never been a big deal to me before this week.  It includes goals we have for Asher to accomplish in the next 6 months.  His developmental therapist was present to help with the process as well.  We also reviewed the goals we had made for him 6 months ago, and I realized he had not met most of his goals.  That was what was hard.  One thing I've heard and adopted as my philosophy for Asher is to concentrate on what he can do instead of what he can't do.  Well this forced me to do the opposite.  One of the goals we made 6 months ago was that he would be pulling to stand...well, no, he isn't there yet.  And it went on and on.  And then there was the goal they didn't think he had met: "follows one step commands."  Fortunately, Asher decided to cooperate, and I promptly showed them a couple of one step commands he could follow without me giving him any hints!  I still think they wrote "emerging" by that goal, but I will be working on "following two step commands" for the next six months.  While this was going on, my sweet boy, obviously bored with being ignored, signed to me that he wanted to watch his favorite sign language video--and I let him.  

The song ends:

It is well with my soul

It is well, it is well with my soul