Friday, December 30, 2011
Jesus' love
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
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
Friday, December 23, 2011
lessons from Dr. Mikati
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.
Sunday, December 4, 2011
Peter update - Dec.4,2011
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
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.
Thursday, October 6, 2011
steadfast love surrounding
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.
Wednesday, September 14, 2011
doing our own dance
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.
Tuesday, September 6, 2011
homeschooling?
So the summary would be: sleep deprived children (have to get up earlier, and little ones get interrupted naps every day). Girls would not see much of me, and what time they see of me would be spent helping them do homework. I'd miss my naps, and have to get up earlier than usual, and not have much time with the girls. And also, Jeff would be bored silly with no girls to play with all day, and they couldn't play much with him after school either till their homework was done. So I wouldn't get much done either with them gone.
I think it's easier to keep everyone home. Have naps when they happen without having to leave the house 2-3x/day. Do schoolwork with the girls in the morning when Peter is napping. Check their schoolwork later. Read history and science together, learn art together, do P.E. and Spanish together, whenever they happen. Then at least they get to see me at the same time as doing schoolwork. And they are here to help play with Jeff or help with Peter when I need them.
For now. This is easier for me.
4-month pediatrician visit
Peter also was panicking when I put him on his back after lunch, to the point of tightening up his whole body and screaming, till I held him and he calmed down again. I don't know what the deal was, except that he has not had any good naps this morning. I don't think he's acted like that before.
Friday, September 2, 2011
a weird week
Monday I came down with a cold, which wiped out my energy till Thursday. Not helped by the fact that Peter likes to wake up at 4:00 or 5:00am and fuss till I feed him at 6:00. Poor child. Which means I haven't slept all that well between those hours either. Today being Friday, I'm really tired from not sleeping enough last night, but it's a different tired than the lack of energy from a cold (I think), so I hope I'm getting better.
I need to learn to accept Peter as whoever he is, and not be constantly frustrated that he's not whatever I wish he were. To learn what Paul learned and wrote of in Philippians: "to live is Christ" and therefore, "I have learned in whatever situation I am to be content." He said "Only that in every way... Christ is proclaimed, and in that I rejoice." When Jesus is everything to you, and you are his glad slave, then wherever He puts you, and whatever He gives you to do, it is okay. I can rejoice! O, to live that...
Monday, August 22, 2011
Peter update
Peter is 4 months old this week. I'm realizing that the little girl in our church (born the same week as Peter) is ahead of him already in several ways. Partly just the difference in interaction between each baby and his/her parents, but I'm guessing some of it is just Peter.
He smiles at things occasionally, but rarely back at someone talking to him. Doesn't smile all that much, but then he's been fussy a lot too (I'm testing whether my staying off chocolate and dairy helps him - possibly, but I don't know for sure). He can hold up his head when lying on his stomach, but doesn't hold it steady when you hold him upright. He doesn't grab things very much, though he'll hold my thumb if I put it in his hand. He doesn't put his hands in his mouth much at all (and therefore, not much self-soothing... :-/ ).
He does track objects with his eyes and can hear well. He is a bit near-sighted, but that's not necessarily abnormal. He has slept much of his life in our homemade crawl track (bigger than the one at that link, and costing a lot less than they charge!) - and therefore, he can crawl (of a sort), especially when he is mad or fussy. He can get from one end to the other (6 feet?) in a few minutes if he's really upset. So as far as crawling goes, he's not behind yet. :-) ...
maybe this has been my honeymoon period
when any delays are not that evident
because there is not that much difference between Peter and other babies.
yet.
my time to hope and wish for normalcy
to be in denial of his problem affecting anything
to treat him (almost) like a normal baby
it's probably time to get serious about doing as much program / home therapy as I can with him, in whatever time he is both awake and happy. To make everything else give way to Peter's needs. Time is his enemy. More time left to "develop normally" without extra help is probably time wasted.
there's still plenty of time to homeschool when he's sleeping.
by God's grace, I will learn to plan meals and things so that our home can run more smoothly.
I'm glad for a homeschool routine that works at the moment, and for 2 girls who can work mostly on their own in a lot of ways.
------------------------------
little one
I just want you to be well
to be whole
I know I should be resting in
the wisdom of my God
but at times I just want to cry
and all the unknown days ahead
make me want to fear and fret
and yet His grace
is sufficient for today
surely it will be enough
for each future "today"
O God
teach me not to be afraid
Thursday, June 2, 2011
Friday, May 27, 2011
waiting children
or stare at in the store
imperfect
defective
disabled and more
waiting to be loved
by someone forever
waiting for parents
who won't leave them ever
so many
with problems
with so many needs
why is it
that we turn our faces away
hope someone else
will love them someday
is adoption then only
for our selfish reasons
would we only choose a child
expected to be "normal"
who would not be
an inconvenience
would not be
one of the weird ones
the needy, the helpless,
dependent ones
yet if God had them
be born to us
we would love them
we would care for them
we would do our best for them
no matter what
who will love them?
who will take the thousands
of waiting children
many of them undesired -
teenagers, "too old, too hard" -
they wish for families too...
babies, born with special needs
might never walk or talk with you...
what then does it mean
to care for the orphan
if we turn away
from the neediest
what does it mean
to show God's love
if we are not willing
to love them
for we are imperfect
defective
disabled by sin
yet the Father
with costly love
took us in
we were more
than an inconvenience to Him
we've been adopted
without being desirable
without being normal
yet He is not embarrassed
to call us His children
not ashamed to claim us as His own
through unconditional love
O God
make us like You
show us ourselves
give us hearts to love
the unlovely
to the glory of God
http://www.togetherforadoption.org/?p=10545
http://www.adoptuskids.org/Child/ChildSearch.aspx (and do a search for age 6 as the oldest age).
Sunday, May 22, 2011
humble pie...
Monday, May 9, 2011
time in the hospital
Well, Peter Joseph was born on April 25, the day after my birthday. He spent 10 days in the hospital NICU due to sporadic breathing & oxygenation problems. Well, the last 5 days were just observation to see if his problems had resolved themselves. We thank the Lord that he seems to be fine now, is home like a normal newborn, and has been cleared to be off the apnea monitor as well.
Being in the hospital almost 24/7 is another world. Not being aware of the weather outside, except to notice if it rained or not. Not much aware of news going on either. Just the NICU; washing up before you go in; walking down to see how Peter's doing today; pumping milk so that the nurses have something to feed him when I go home at night. Waiting to see when we can go home. Glad when we would check in to find that nothing else had come up overnight with the baby, that he had had a good night with no "events".
While we were there, April turned into May. The pea plants in the garden doubled in height. Jeff learned to put on his own shoes, and all the kids got practice brushing and even flossing their own teeth. My Mom held down the fort with them at home while we were gone, and David's mom helped out as well, taking the kids to have time at her house to give my Mom a break.
We were very happy to get to come home on May 4th, and be home for Jeff's 3rd birthday on May 5. And to have the pediatrician tell us on May 6th that we didn't really need to keep using the apnea monitor! (since Peter had been fine for a week at that point).
God has been so good to us! "The future still unknown..." but God knows it from beginning to end.
Sunday, April 17, 2011
thank God for your kids
I go read the blog
by Oliver
and Waverly's mom
her children slowly
lose all their skills
now Wavey can't talk
Oliver never will
so when my children
talk so much
"eat up their words" she says
to watch her children
slowly die
is bitterness through the years
Monday, March 28, 2011
the LORD is on our side!
which cannot be moved, but abides forever.
As the mountains surround Jerusalem,
so the LORD surrounds his people...
You keep him in perfect peace
whose mind is stayed on You,
because he trusts in You.
Trust in the LORD forever,
for the LORD GOD is an everlasting rock.
the LORD [is] on our side...
Our help is in the name of the LORD,
who made heaven and earth.
Behold, children are a heritage from the LORD,
the fruit of the womb a reward.
(Ps.125:1-2; Is.26:3-4; 124:1,8; 127:3.)
Thursday, March 17, 2011
my Maker
My help comes from the LORD,
who made heaven and earth.
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
The LORD will fulfill his purpose for me;
your steadfast love, O LORD, endures forever.
Do not forsake the work of your hands.
(Psalm 121:1b-2; 139:13-14; 138:8)
Wednesday, March 16, 2011
The Gospel
In one he quotes B.B.Warfield:
"There is nothing in us or done by us, at any stage of our earthly development, because of which we are acceptable to God. We must always be accepted for Christ’s sake, or we cannot ever be accepted at all. This is not true of us only when we believe. It is just as true after we have believed."
http://thegospelcoalition.org/blogs/tullian/2011/03/08/the-gospel-is-for-christians/
In the other he speaks of being "addicted to the gospel":
I’m addicted to the gospel. It burns inside of me. And it seems to get hotter ever day...
My passion has become singular. Lesser things don’t distract me as easily. I’m not as anxious as I used to be. I don’t fret over things as much. I’m more relaxed. What others think of me (either good or bad) doesn’t matter as much as it used to. I’m enjoying life more. The pressure’s off. I actually think I’m beginning to understand the length and breadth of the freedom Jesus purchased for me.
Jesus plus nothing equals everything–the gospel– is daily becoming for me more than a theological passion, more than a cognitive reality. It’s becoming my functional lifeline! And it’s this rediscovery of the gospel’s power that is enabling me to see that,
Because Jesus was strong for me, I am free to be weak;
Because Jesus won for me, I am free to lose;
Because Jesus was Someone, I am free to be no one;
Because Jesus was extraordinary, I am free to be ordinary;
Because Jesus succeeded for me, I am free to fail.
This is beginning to define my life in brand new, bright, and liberating ways...
- The banner under which Christians live reads “It is finished.”
- Only when you realize that the gospel has nothing to do with your obedience but Christ’s obedience for you, will you start to obey!
- At no point in time, either before God saves you or after, does your behavior determine God’s love for you.
- Our improvement comes from God’s approval; God’s approval does not come from our improvement.
(Go read the whole post!)
Saturday, March 12, 2011
Song for Those with Disabilities - by Bob Kauflin
Song for Those with Disabilities - by Bob Kauflin
Within the womb I formed you
I fashioned and made each part
I thought of your fingers, your hands and your feet
Your mouth, your lungs, your heart
Though you might think that you’re different
I made you the way that you are
So you could discover the God who made you
And find out all I am
And though you might think you have limitations
There are no limits with me
When you turn your eyes to my salvation
Finally you will see
In Me, you have all that you need
In Me, you have all that you need
In Me, you have all that you’ll ever need.
And I’ve heard each prayer that you’ve called out
“Why did you make me this way?”
You may not completely understand now
But there will be a day
When I make everything known to you
And what you don’t now understand
You will see that I’m wise and I’m mighty and good
Just like all my plans
And if you trust in the work of my Son
One day you will see
That I’ve made you the way you are
To draw your heart to me
To draw your heart to me.
(listen here or read about Bob Kauflin's doing the song here)
Friday, March 11, 2011
Wednesday, March 9, 2011
Waverly
I saw a little girl on a show
Named Waverly
Her body lacks an enzyme
And it's slowly killing her
And there's nothing they can do
To make her well...
----------------------
First the excitement of another little one
On its way
our scheduled ultrasound comes one day
happy to find out that it's a boy
so Jeff can play...
Doctor comes in and says I have bad news today
Though all his body's fine
There seems to be a problem with his brain
and so we go away
to wait a test on another day
trusting that God knows
glad that his condition doesn't seem too grave
2 months later and we do another scan
things are worse now than when they began
too much fluid, brain too small
still don't see corpus callosum at all
expect your child to be delayed
no one can tell how mild or grave
O God please help me love this child
he isn't what we wanted
defective kids -
to other people are appointed
and so I grieved
the loss of dreams
of all those expectations
and tried to trust
the God I love
and His perfect intentions
two days later at the park
down at the outlet mall
"Waverly - it's time to go!"
a child's name was called
and I remembered Waverly
the girl they cannot save
and God whispered, "Remember,
they expect your child to live."
---
whoever you are
whoever you will become
I love you now
I bid you welcome
you will be our own
like all the rest
you will be our joy
not just a test
and by God's grace
we'll do our best
O may you come to know Him
to know the love of God
the Jesus who can save you
no matter what you're not
and He will be your helper
to lift you when you fall
to wrap His arms around us
to be our All in all
3-6-2011
Your hands have made me....
Monday, March 7, 2011
Your hands
give me understanding that I may learn your commandments.
Those who fear you shall see me and rejoice,
because I have hoped in your word.
I know, O Lord, that your rules are righteous,
and that in faithfulness you have afflicted me.
Let your steadfast love comfort me
according to your promise to your servant.
Let your mercy come to me, that I may live;
for your law is my delight.
Ps.119:73-77
Saturday, February 19, 2011
to count for something
I see the pictures of those who have gone far away, giving up everything in America, to reach the nations for Jesus. And the blog posts of those who have given up much in order to show compassion to the orphan.
And what have I done? I want to count for something more than living focused on myself, my family, my little world. I want to have fruit for Heaven. I want to live in some more sacrificial way than my life here tends to. Something for Jesus.
Is it just so I can say, "here Jesus, I did something for You"? That wouldn't be worth much. He doesn't want me thinking I've done good works and therefore have something to offer, when His work is all I should be boasting in.
But I want to live for something more than my little world, to do something that counts for eternity! Surely God does not put his children in a place where they cannot bear real fruit.
Show me Jesus. Fix my eyes on Him. Attach me to the Vine, without whom I can do nothing; that I might focus on Him and thus bear much fruit...
Thursday, February 17, 2011
kids growing
In the meantime, I got off the computer and came to rally everyone for lunch, and Jeff had disappeared. I found him in the pack-n-play (where he still takes a nap). He had gone to the pantry and gotten out the 2-step stepstool we keep there, and put it up next to his bed so he could climb in. So there he was, lying down and with his blanket on his head (his best effort at getting it on top of himself). He thought it was funny, and so did I. I guess he was ready for a nap. I did get him to come eat some lunch first though.
Emily asked if she could have some bread with cinnamon sugar on it, so I said yes, after your sandwich is done. So while I was helping Jeff get ready for a nap, she found a piece of bread, cut it in half, and got her cinnamon sugar on it. My big girl... and not afraid to try doing things herself. She even likes to try cutting up apples herself, with a sharp knife (though I watch with fear of her cutting herself... but I guess that's how I learned once too). She's not too bad at cutting it in pieces, though she might still want me to get the core parts out.
The other day, I lay down for a nap late, and Jeff woke up from his nap not long after that. So I got him up, and Katherine asked why I was up already. I said, because Jeff is up. Katherine wants to be the big girl too. She said, "I can take care of Jeff, and help him go potty, and get him a snack. You can go lie down again." So I did.
Sunday, February 13, 2011
all I really need
this is all I really need:
"Be still, and know that I am God...
The Lord of hosts is with us!
God is our refuge and strength,
a very present help in trouble.
God is in the midst of her; she shall not be moved..."
"You keep him in perfect peace
whose mind is stayed on you,
because he trusts in you.
Trust in the Lord forever,
for the Lord God is an everlasting rock."
(Psalm 46:10,11,1,5; Is.26:3-4)
Sunday, January 16, 2011
Psalm 100
Make a joyful noise to the LORD, all the earth!
Serve the LORD with gladness!
Come into his presence with singing!
Know that the LORD, he is God!
It is he who made us, and we are his;
we are his people,
and the sheep of his pasture.
Enter his gates with thanksgiving,
and his courts with praise!
Give thanks to him; bless his name!
For the LORD is good;
his steadfast love endures forever,
and his faithfulness
to all generations.
Thursday, January 13, 2011
call to trust
I see His power over nature. Over the spirit world. Over death and disease. With a word, even without a word, He wills, and it is done. He takes nothing and turns it into abundance.
He calls me to trust Him. His power, His mercy. And to leave all the what-if's of the future with Him. Will He not give grace for every situation? Will not whatever He gives be a choice gift from His hand, better than any alternative?
Wednesday, January 5, 2011
He is Lord
and He makes no mistakes
whatever He gives
will be found better
than whatever we thought we wanted instead