Jesus' love

how do you love someone
who gives you nothing in return?
rarely smiles
never laughs
has nothing to offer you?
how do you give and give and give
without growing weary?
I guess that's what Jesus did
for me...
remembering that
I can love out of love for Him

jars of clay

back to real life
Christmas can't last forever
a break has been nice
but the weary days must return
I'm feeling like "jars of clay"
need to trust God for His strength
the excellence of the power is His and not mine
may I lift my eyes
lean on Him
focus on His beauty
may His power be perfected
in my weakness

lessons from Dr. Mikati

Dr. Mohamad Abdul Mikati is Peter's neurologist now.

When I emailed his secretary to say that another doctor had thought Peter had infantile spasms, and that I wanted to know if he could be seen sooner than his scheduled visit, Dr. Mikati had the secretary call the next day to say he would see us in a week (instead of in a month). Here we are, total strangers. He's taking my word for it that someone said my child had this problem. He hasn't seen the EEG's or anything. And he overbooks his schedule, seeing us probably over his lunch hour, in order to get Peter in sooner. It just amazes me.

And then, having done his own diagnosis, he starts Peter on treatment that requires him to come back every week or two for a checkup of how he is doing - so again, Dr. Mikati overbooks his own schedule to see Peter at times he normally doesn't see patients. Once it wasn't even his clinic day, but that was the day the EEG people could get him in, so Dr. M. came to see him anyway.

I couldn't deserve such a doctor, nor do anything to get him to care for us as he does. But he has a big heart for all his patients, apparently, and for those who show up needing help who are not already his patients. He cares. For strangers. And does it knowing he will now be taking responsibility for them as his patients, serving them often at a cost to himself.

It makes me not mind waiting for him at appointments (he usually runs late) because I know that he is probably taking time to see another patient and answer all their questions like he does with me. It makes me willing to gladly do whatever he says, because I trust him that if he is willing to sacrifice for my child, then he must truly care about him and have his good in mind.

... so the Lord made me think about Jesus. I could not deserve His caring for me, perhaps not a stranger to Him, but an enemy at least. He, at very great sacrifice to Himself, cared about me in my need. I could do nothing to get him to care for me, nothing to deserve it. I am just a needy sinner, and He has shown compassion on me. And He has done so, knowing that He would be taking responsibility for me as one of His own.

I should be completely willing to do gladly, whatever He says; to trust Him implicitly, because He sacrificed greatly for me. Therefore He must care for me and have my good in mind.

O that I would remember these things, and live them! To remember my thankfulness and undeservedness in regard to Dr. Mikati, and to therefore remember Jesus' greater love and care for me. And to trust Him completely in everything.

Thank you, Dr. Mikati, for teaching me about Jesus.

Peter update - Dec.4,2011

For those who don't follow me on Facebook, here's a brief update on Peter.

I was concerned that he might be having what is called "infantile spasms" and got an EEG done and a visit with a neurologist. After that we had another EEG (a longer one), followed by a switch to a different neurologist. This one got me in to see him 3 weeks before the scheduled appointment and then recommended we admit Peter to Duke Hospital (where this doctor works) for a "video EEG" (they videotape while they have him hooked up to an EEG machine) so that they could see what he was doing at the time when he was having the suspected spasms, and coordinate that with what the EEG showed his brain doing. And while we were there, they could run a bunch more tests on Peter to see if they could find out what caused the spasms (or rule out things that didn't). So we did that last week, and they did diagnose him as having infantile spasms, and started him on a potent drug called Acthar (ACTH). The only form this comes in is administered by intramuscular injection - i.e., I have to give him a shot in his thigh twice a day for 2 weeks or so, followed by once a day for a few weeks to taper the drug off. We are praying that this would indeed stop the spasms for good and also not cause some of the possible horrible side effects that can result. Please pray with us for these things.

Peter has gotten delayed in his development and is probably closer to a 2-3 month old in development, though he's over 7 months old in age. This may be due in large part to infantile spasms, as they are associated with developmental delay. We are praying that Peter will be able to develop better after this treatment, if indeed it can stop the spasms.

when love demands the infliction of pain

I don't think I'll ever get used to giving my child shots of medicine into his thigh. More proficient, yes - happy doing it, no. Perhaps that is as it should be. It should not be pleasant to inflict pain on one whom you love. Yet there are times when love demands the infliction of pain, because there is no other way to gain the most good for the one loved. It is hard to do the unpleasant, to make your child cry out in pain. By God's grace we do it faithfully - and then comfort our son's tears.

Why then do I not trust my perfect Father in all His dealings with me? In His perfect wisdom, He knows what will be for my best good. And sometimes the only way to effect that good is through pain. So He inflicts it out of love, yet perhaps it pains Him to inflict pain, the same way I am never happy to cause my own child pain. And then He comforts the tears that He causes in us. Surely He doesn't cause us needless pain, needless tears. What parent would delight to needlessly hurt their child? Surely God is the perfect Father. I pray that I will trust Him when He causes me pain - that I will remember what it feels like to grieve that I must cause pain, and at the same time to know that there is no other way, and that love demands it.

steadfast love surrounding

"...steadfast love surrounds the one who trusts in the LORD.
Be glad in the LORD, and rejoice, O righteous, and shout for joy, all you upright in heart!"
(Ps.32:10b-11).

No matter what my circumstances, Jehovah's love surrounds me. Whatever is going "wrong" as I see it, still God is the same and has not changed. His love has not changed. His plans, His wisdom, remain unmoved, and He has promised that they are for good for those He loves.

If I would believe that practically, not just in my head, there would be less worrying, more peace. I fret that my son might never fully develop and mature; but God's plans are higher, and His design is not just for the physical things, but for my heart (and Peter's I hope) to know Him. To be near Him. To know more of Him and hold Him more dearly.

O to realize in each moment, that this life is not "Life" but rather the training ground for it! That God is the one great goal of my life, and whatever leads me closer to Him, is good. To focus less on success and results in my endeavors, and more on gladly serving my King in whatever assignment He gives me today.

"Our life is not the way we plot it or plan it. And so I guess all along I've just accepted whatever assignment the Lord gave me. This was his assignment... The greatest problem is unrealistic expectations. We naturally want to hold our loved ones to what they were... instead of accepting them for what they are. ... So I say, in acceptance there's peace. Accept them as they are. Don't try to change them or hold them back to what they used to be." (From an article about a man's care of his wife who had Alzheimer's.)

I need to have that attitude too: accepting whatever assignment God gives me today, and gladly (don't I keep telling my kids they need to "obey sweetly"?). And accepting of whatever Peter is, while both pushing him to develop as much as possible and at the same time not being frustrated that he is not what other babies are.

doing our own dance

The LORD has eased me into acceptance (maybe I'm still getting there) of a child who really does have issues. Given the spectrum of kids with Peter's problem (from severely disabled to very mildly affected) I was determined that I would make sure he was on the mild end by doing everything I could at home to "fix" him. And by God's grace, I still pray that I can be of much benefit to him and help him develop as best he can. But when the brain isn't working right, it just isn't, and perhaps it takes a lot more effort than I wished to help it along.

It's easy to forget the development I've already seen, and answers to prayer, in the midst of the things Peter ISN'T doing yet and that I pray about now. For example - he is truly smiling more - yay! It's so nice to have a happier baby, and one that can express happiness a little. He still doesn't smile back at people as much as one would wish, but he does express pleasure at least. Not laughing, but at least smiling when he likes something. It's easy to forget that just a few days ago I was starving for some smiles, and now he's doing it! ... easy to focus more on the things you still want him to do, like realize that his hands are under his control, and that they can grab things.

He does seem happier when I'm off dairy and soy. Chocolate might be ok - we're testing that theory in small doses. I was surprised to find that it is harder to get soy out of my diet than dairy. Well, I haven't worried about baked dairy (dairy in bread, muffins, etc.), just fresh. Baked doesn't seem to make as much difference. But soy - there's soy in protein bars, soy in granola bars, soy in multi-grain crackers, soy sauce that I use for cooking. At least (according to one pediatrician) things like soybean oil and soy lecithin should be ok, because there's no soy protein in them, and it's the protein that bothers the baby. Whew - because those two things are in a whole lot more products that I'd have to remove if they were a problem too!

Anyway.
Getting good sleep really helps. Lack of sleep makes me emotionally fragile.

I feel like I'm in grief like when you lose someone, though not as intense. Where on the bad days, anything can make me sad again. Sad to lose - what? a healthy child, perhaps. I grieve over his lack of development. Grieve as each day goes by that he hasn't learned something that his peers are learning. Grieve to realize my life has been radically changed - not just for a year or two, but possibly indefinitely. Grieve to wonder what his life will be like.

It's as if as time goes by, he and I are increasingly on our own path, not on the one that his peers are on. We are doing our own dance to a music no one else can hear, dancing away from the rest, into our own world somewhere.