a season of gratitude

"As parents you may not realize it, but somewhere along the way you tend to take your children into yourself, as if they were really yours. We forget that our children our first of all God's—on loan from us for only a season.” (my father-in-law)

If there is anything I have learned from this ordeal with Aggie so far it is this. Of course on some level we all know this is true, but it is so easy to forget as we live day to day. As I researched epilepsy and began to genuinely fear for Agnes's life, I became painfully aware of this truth again. I realized that God most certainly could take Aggie home to him- and though this would feel like an INJUSTICE beyond anything I could imagine, I would have no ground on which to stand and complain.

It is so easy to let our problems completely block our vision- like a huge black bowling ball one inch from our eyes that completely blocks our vision. Some days I let my worries about Aggie interfere with hundreds of little moments that I could have been enjoying her, making memories with her and the other children, serving and loving those around me. Instead I let fears of the future take hold of my mind- I did not think of my Father who is caring for me today and who has promised to care for me in any kind of future.

These kids of mine sure are good at helping me live in the present. We have been doing a cornucopia and adding things each day that the children are thankful for (the picture above.) I just have to laugh when I look at them: “That you Jesus for wrestle time with daddy.” “Thank you Jesus for my snuggly bed.” “Thank you Jesus for superman PJ's” “Thank you Jesus for doors.”

These kids get the picture better than I do some days! They are learning to see every little thing in their lives, right down to the chocolate milk, as blessings directly from the hand of God. They do not forget that God cares for them- all they have to do is look around!

As Martin Luther asks- who can properly give thanks to God for the blessing of one healthy hand, or one day with air to breathe? Our Father gives these things freely and faithfully, and we forget that they are gifts and see them as entitlements! Then when one thing goes wrong, we throw temper tantrums and doubt God's goodness to us.

O give thanks to the Lord, for he is good. His steadfast love endures forever.

My prayer for all of us this Thanksgiving: May God grant us eyes to see His bountiful blessings that surround us each and every day. May we see the kindness of others, the love of family, the warm turkey and mashed potatoes, and even the very air we breathe as blessings directly from His hand. May He fill our hearts with gratitude for His unfailing love and goodness.

Have a blessed Thanksgiving!

meds and holidays

A quick Aggie update:
Aggie is most certainly not thankful for her medicine. She must take it twice a day, and the first few doses were torture! She worried about her first dose for at least three hours before she needed it, to the point where she almost made herself sick. Then, the next morning, as she was bringing me the medicine (wailing all the way), she somehow shot a dose of it directly into her eye!

Each does is a little easier, and I am thankful that so far no nasty side effects are showing up. The meds do not seem to be doing much for the seizures yet, but the doctor told us it would take time. While the medicine does go right into the blood stream, it takes several days- up to two weeks- for it to reach the desired level in the brain.

The boys are having some great grandma time, while the girls and I are getting ready for our Thanksgiving trip to MI! We also got the Christmas decorations out- none of us girls could wait any longer!

A treatment plan!

We just got home from our meeting with the neurologist.

Aggie does have epilepsy, and the doctor confirmed that she has been having complex-partial seizures. The spot that showed up on her MRI is most likely the cause of it. What exactly it is (displaysia, scar tissue, or a low-grade tumor) was not able to be determined from the MRI. Regardless of what it is, it is small enough that the first line of attack is going to be medication to treat the seizures.

We start her on meds tonight. The doctor said 70% of people with epilepsy are able to control it with medication. Our goal is to find the right medicine with the right dosage to make her seizure free and side-effect free. This may be a rough road of trial and error, but we will take one day at a time and go from there.

As far as the brain abnormality- she will have to have another MRI in 3 or 4 months to see if it grows or changes at all. At least we know it is NOT a fast-growing tumor (if it is a tumor at all) AND it is in a reachable part of her brain should surgery become necessary down the road.

Although I know there will still be hurdles to overcome, compared with the pictures in my head, THIS scenario seems livable. I am now going to take a much-needed nap.

Your prayers, emails, and phone calls have held us up more than I ever could have imagined. I thank God for all the people both here at White Creek at back in Michigan that care so much about our family.

Have a blessed Thanksgiving!

"Give thanks to the Lord for he is good, His steadfast love endures forever!"
Psalm 118

A thought for the day

“People tell you to be strong- I say be weak and be loved.” Aunt Julie

Little did I know as I went to church yesterday morning that I was about to “be weak and loved” right there in front of everybody. I need to teach my dear husband to warn me when he is going to preach sermons like that- I didn't even bring tissues! (thank you Crista for sharing yours!)

Now, encouraged by the love of family, church family, friends, and God himself, we are getting ready to go to our big appointment. Thanks in advance for all your prayers today- we meet with the neurologist at 11am this morning. I will post again as soon as I can!

Dear Father, thank you for your constant provision for Aggie and her family. As we go to meet with her doctor this morning, help us to remember that she is your child, and you love her more than we do. Help us to trust you no matter what we face today, knowing that you have promised never to forsake your children and to bring good out of every evil we face in this life. You have promised peace for your children even in the most difficult situations- please graciously grant this peace to her parents and all who are concerned for her. Thank you for your great love for us. Amen.

News- sort of

We got MRI results already at 10 this morning. I was not surprised to hear they did see a little "something" in Aggie's little brain. This "something" is not in any major part of the brain but underneath (sorry I did not get the technical terms from the pediatrician). This "something" may or may not be causing her problems. It could be just an abnormality from when she developed, scar tissue from a minor infection we never knew she had, or an early tumor. As the words "Aggie might have a brain tumor" have been screaming themselves loudly in my head for a couple weeks now, this report has not really changed much in my own mind.

We are really hoping the neurologist will be able to tell us more on Monday morning when we meet with him.

In the meantime, God is watching out for us- even giving moments of joy and just plain fun in all of this. Aggie was hilarious when she first woke up from the MRI. She was giggly, forgetful, and just silly. She thought she could walk but she really could not so we had to carry her for awhile. We took her out to Bob Evans for pancakes because she was starving- not sure how wise it was to take a drunk 4-yr old out in public, but it certainly was an adventure! Josh said, "It's like Aggie without inhibitions!" I never really thought she had inhibitions, but compared to drunk Aggie- she actually uses a ton of self-control on a normal day! All the way home she talked and laughed about everything she saw. "Look a ladder.. laaaaddeerrr.... ladderladder laaaader... that's a silly word!" And then of course over and over again she said "We can't forget to pick up the boys! I love my brothers. I LOOOVE Seth. I LOVE Marcus!"

Her hyperactivity started being not so funny by the time we got home. Her siblings were glad to see her but not so sure they wanted all-out wrestling matches all night long. Even this morning she was just NUTS... constantly running people over and hurting people and dropping stuff! And just when I was thinking "AAAAAAHHHHHH why can't it be summer so she can go outside????" a friend called and offered to have the kids play with hers for the afternoon. Ahhhh... green pastures and still waters- God knows what I need!

So I had a chance to do some housework, read up on epilepsy, pay bills, and other fun things. But before I started any of that I made myself do something FUN, just because I wanted to, not because it was on any list. Marcus and I got out our nativity set!!!! Garland, lights, and all- it looks so beautiful on top of our entertainment center. And now it is snowing- I love it!

So Aggie might have a brain tumor.. what of it? Today she's doing great, and we are going to get excited for Christmas! Yes, I am full of fears and worry, and tears are usually pretty close to the surface, but God is helping me to not let them paralyze me. He reminds me to take each day for the gift that it is, and trust the future to him.

As I read that last sentence, I realize that actually doing that would pretty much be a miracle. But that's what we want, isn't it? And God can do it, for Aggie, for me, for everyone. That is what Christmas is about really.

"Lord, we believe, help our unbelief."

We made it!

Just a short note to say we made it through the MRI!

Aggie is doing just fine right now... actually a little loopy, perhaps better than fine! It was a long day, and the worst part was the IV (let's just say they had to get the tissues for Aggie and her mommy!) but we are home safe, and expect results within 24-48hours.

Thank you all so much for your prayers and encouragement!

Blessings and Boogers

I had to share this- I was just looking around online to make sure I knew where we stand as far as insurance, directions to the hospital, etc, and I found this:

http://rileychildrenshospital.com/physicians/med-sub-specialties/neur/doctors-diligence.jsp

This is the doctor Aggie has been referred to- it is so good to read these good things about him! \

When you think of us for the MRI, please pray that Aggie will NOT have too much congestion or a cough- if she does they will not do the procedure. If we have to wait LONGER ... It just won't be pretty. So, as you pray, don't forget to pray for Aggie's boogers! (or rather against them!)

“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19

AGGIE NEWS:
Please pray for her on Wednesday as she has an MRI- she will be sedated ("conscious sedation") Pray also for her parents as we wait for results. This is one of the tests the doctor will use to look for underlying causes of her epilepsy. We meet with the doctor next monday and hope to have a treatment plan by then. She is doing the same right now- we are all learning to cope with the frequent seizures and God is providing for our family in every way during this time. Thank you for your prayers!


“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19


Her episodes started three weeks ago now. First they were just strange moments of staring and acting like she couldn't hear us. Then they started happening more often, sometimes with a strange giggle, sometimes with aimless walking and other symptoms. The doctor scheduled tests, we all suspected seizures, and now we are waiting.

We did research. We noticed how exhausted she seemed all the time, like whatever was going on in that little head of hers was completely draining. We learned about different kinds of seizures, and began to suspect she has some form of epilepsy. (This has now been confirmed.) We read about drug treatments, nasty side effects, restrictive diets, and safety precautions. I began to journal the episodes: how often, how long, other symptoms, anything I could think of that might be related. I now have pages and pages of details, and I do not know if any of them are important. Still we wait.

Today she had seven seizures that I am aware of. After one of them, she wanted a hug and some “mommy snuggles” while she watched TV. I held her close to me, kissed her hair, and whispered “Jesus, please help Aggie.”

“Why did you say that mommy?” she said and looked up at me with her innocent, sunken eyes.

I willed the tears that were forming in my eyes to stay there while I rubbed her back and told her not to worry, that she just seems tired and maybe her body is fighting something. She is completely unaware that she is having problems at all- her seizures leave absolutely no trace in her memory.

She is still my little hummingbird, fluttering around enjoying as much of life as possible. She knows nothing about her parent's worries, the tests that are coming, or the decisions we will have to make for her. She does not know her eyes look sunken and tired, nor why everyone asks her if she feels okay several times a day.

Tonight I thought of baby Vivian and her parents. Her life was so short, less than six months, and for her parents it was full of worry, tests, decisions, and nights of watching and wondering And she lived her short life, every day full of tubes and nurses and tests, and every day resting in the love of her parents; hearing their voices, feeling their arms around her. I do not know what baby Vivian knew of the pain, but I am confident of this: she knew she was loved. Her parents loved her while they bore for her a burden she didn't even know she had.

That rather sums up our job as parents, doesn't it? We bear burdens for our children that they do not even know they have and could not bear alone. We care for their bodies, making nutritious meals, making sure they get enough sleep, wear warm enough clothes, keep up with doctor visits, and get lots of fresh air. We care for their minds, providing for their education, socialization, and mental stimulation. We care for their souls, by bringing them to the Lord in Baptism and feeding their faith with God's Word at home and at church. We care for them when it is difficult: when they are sick, rebellious, or in need.

Unless the LORD builds the house,
its builders labor in vain.
Unless the LORD watches over the city,
the watchmen stand guard in vain. Psalm 127:1

Unless the Lord cares for Aggie, we test and learn and care for her in vain. But He does care for Aggie, He has promised in her Baptism and in His Word. She is His little lamb, and He loves her more than I do. He bore her heaviest burden: sin and death: He cared when it hurt, when it cost His life.

Aggie is God's child. She has not been promised a life without suffering: in fact, God's Word tells us that suffering is exactly what we should expect during our time on earth. Yet, we also know that “the sufferings of this present time are not worth being compared with the glory that will be revealed.” We believe that God works ALL things, even epilepsy, for the good of His children. (Romans 8)

As parents, we are called to love our children and bear their burdens with them, just as God has done for us. Sometimes it is easy; sometimes it hurts terribly.. I am not strong enough to watch my child suffer with epilepsy. My heart cannot bear holding her while she recovers from a seizure, knowing I can do nothing to prevent the next one from coming. Aggie and I are the same in that way: we are scared, fragile, and powerless over the future. What can we do but reach out for our Fathers arms?

Just like our children, we also have a Father who bears burdens for us that we do not know we have and cannot bear alone. During these recent struggles with Aggie, I have seen God's hand every single day in the love of others. Through His other children he has provided listening ears, encouragement, strength, babysitting for the other children, and even meals on nights when I was too tired to cook. He bears my burdens---giving me the strength to share in hers.

Together Aggie and I reach for God's help, and God is faithful. He gives strength for each day, and His love drives out fear. He encourages Aggie through caring siblings, cozy blankets, and “mommy snuggles.” And this mommy does not run out of snuggles, because I know that as I hold her, Jesus holds her too. And as I hold her, I am also being held by Him who loves us both.