BUT
it's still hard.
We are driving 1 hour three times a week. He is missing school for the appointments...so there is homework to make up. When we started I said "we can stick this out for 3 months"
And we will.
Yesterday the PT evaluated his walking....the new legs were great....the first day....(we will be starting therapy for that too) Oh and the hamstrings are very tight (thus the picture) the expression is from being told he should do stretches
Then he developed a blister behind his one knee ...so to avoid pain...we developed a wonderful limp...even when it doesn't hurt. Some habits are very easy to start.
Last night I thought we had a breakthrough..we were talking about how we walk and how we swing our legs (try to explain walking to someone...his center of balance is different and now his legs are the same length..for the first time in a very long time)
Anyway, suddenly he seemed to get it...he strode confidently through the kitchen...couldn't even hear that it was Joseph walking...sounded like one of the others.
WOW! wonderful!...didn't even hurt....felt good!
This morning...got out of the car at therapy..same old story...I tried to coach and remind him what we learned last evening....I got snapped at...when I asked if his voice means that he is angry at me...he said "YES!"
I decided I need to walk the other direction before I say something I should not....
you see, yesterday when the PT asked him for his goals with therapy...he said "so mama doesn't think I walk funny."
OhKAAAY! We explained and I thought he understood that this if for HIS benefit, not MINE! Apparently I have been coming across that way...so I guess I will be backing off.
I told him later that I don't even care if he walks...it is up to him...
That is where the lie comes in...I do care...a whole lot!!
I need to talk to him ....with DH present and somehow convey how this mothering thing works...
Any advice?
Oh wow. I wish I had some great advice for you but I don't. Sigh. It's just so hard with these older kids!! And when they have difficult medical stuff, it's ALL THE HARDER.
ReplyDeleteJust press on, friend. Stay strong and VENT as much as you need to those of us who understand how hard things can be.
Love you!!
I don't think I can give you any advice as I always in am in awe in how you handle yourself with the kids, especially this dear son!!
ReplyDeleteI love your pose and grace. I learn from you!
Advice, from my Christian friend with a PhD in psychology, maybe say something in this vein:
ReplyDeleteSon, you already know a lot about how hard life can be.
What you can’t know much about yet is how hard being a parent can be. We ache almost with every ache of each of our children — wishing we could take their pain for them, from them — bear their pain for them.
Rarely can we do so. And sometimes when we can, it doesn’t turn out well.
Too often when we try to bear a child’s pain, the child doesn’t learn the lessons that specific child will need for their specific life path. Then, instead of helping our child, we have ended up handicapping them more.
Some people have an idea that before we come to earth at birth, we meet with Father God and choose together what lessons, struggles, crises and handicaps we’ll have to cope with toward our spiritual growth and education. That’s not Biblical so who knows whether it’s true or not. However, it is plausible. It would fit God’s character to arrange that.
Regardless, you have your set of challenges set before you. You can rise to overcome them or be bloodied needlessly more than necessary under them.
AS your parents, we desperately want to do all we can to help you rise to overcome your struggles, challenges, pains and sufferings. That will enable you to better handle the next lessons in life and succeed in being all you were designed to be with as much fulfillment and joy as possible.
In this leg situation — a huge chunk of the rehabilitation REQUIRES PAINFUL stretching and other exercises to be doggedly engaged in fairly relentlessly hours and hours per week. There’s no short-cut. We cannot do it for you.
If you will NOT do it, THEN you WILL be FURTHER handicapped in the future. You will not have the mobility, ease of walking, etc., that you will likely need in many situations in life.
The EASY WAY OUT is virtually never easy in the long run. It is almost always MORE costly and more painful.
We can hold your hand.
We can give you hugs.
We can hurt with you.
We can love you all the ways we can — no matter how feeble those ways seem alongside your pain.
We CANNOT do the hard work of rehabilitation that only you can do.
Please tell us how we can encourage you more effectively and help you persist in such a discipline. It is essential for your well-being and joyful fulfillment later-on.
We desperately love you.
We hurt when we see you taking 2nd best or less for yourself.
I don't know if this will help at all with Joseph. There were times that it was helpful with FuXia, and with the language barrier (and maybe a little "I don't understand you" stubbornness), we kept our words short and simple. Or tried to.
ReplyDeleteOn one night of pain and fear, FuXia told us he didn't "want to do this anymore." He was referring to the painful serial casting sessions, and he was convinced that it would not work.
I held his hand and told him, "FuXia, you are my son now. I do not want you to hurt. Dr. VB says if he does these casts you will be able to walk. He knows how to make this happen. But you have to want this for FuXia. You have to want to walk, or it will not work. If you cannot walk, always you will go where somebody else wants FuXia to go, and you will go when somebody else wants FuXia to go. I know you are afraid, and I know that it hurts, and I love you, and I am sorry. And I know that if FuXia wants to walk for FuXia, here (and I patted his chest over his heart), you will be able to go where FuXia wants to go, when FuXia wants to go, and you will be in charge of your body. Nobody else will be in charge of your body.
If you think you want to walk, Mama and Baba love you. If you think you don't want to walk, Mama and Baba love you. God knew you are FuXia before you were born, before you were in your Mother's belly. He knows what FuXia's heart wants, and He will make you strong. Tell Him you are afraid. Tell Him you hurt. Ask Him for help to decide what you want, to walk or not walk. He loves you."
We have had some version of this conversation a few times. There were sometimes more pauses, so he could talk, too, but most times he seemed to listen. He would tense his jaw if he didn't like the words :) That was our gauge.
Praying for you, friend, and for the boy who is afraid and wants to be in control of anything in his life.
Hmm... just keep making him mad. It is like making them wear their retainer after braces or our daughter Bret has to wear a garment that covers much of her face for 2 years. I do know making the appointments in itself is hard. We live at our hospital, but live close so it must be so much harder when you have to drive awhile.
ReplyDelete