My Storm Rages On

Yesterday at Bible Study we were talking about the book of Job. It seems that it is so easy to love and praise God when things are good, but what happens when things don't go according to plan? This story is from Jenn Johnson, one of my college roommates. It's an honest and emotional account of dealing with their son and his special needs. I'm in awe at how they are dealing with all the difficulties his situation has brought into their family - I think you will be too. So here it is:


My storm rages on.

My eight year old son has uncontrolled seizures. He’s been medicated for six years and still has a few break through seizures every month.

My son has pervasive developmental disorder which is their way of saying he has autistic tendencies, but not quite enough to be diagnosed.

My son struggles to express his thoughts, which makes it hard to have a conversation with him.

My son processes the world differently than most people. I struggle to connect with him or communicate the complicated and subtle social world we live in.

My son feels the world around him is out of control and he fights for control. He has anxiety about new situations. He fights change.

My son is envious of his younger siblings and the privileges they receive because they are able to cope and handle situations that he isn’t able to handle.

My son lashes out and hurts others physically and verbally. He is irrational and unreasonable at times.

My heart breaks.

My heart battles feelings of guilt. Guilt for how I treated my son before I understood his disability. Guilt for wishing some days I didn’t have to deal with him. Guilt for feeling like I neglect my other children. Guilt for feeling selfish because my dream or longing for how my family would function and experience life is not being met. Guilt for thinking I have it hard when I know kids with much worse disabilities. Guilt because sometimes I think, “We could have bought a big screen HDTV with all that money we just spent on therapy.” Guilt for terrible thoughts I’ve had about how life would be easier without him, but then he’ll have a sweet, innocent moment or he’ll come and give me a hug without me asking for one which is so special because there has been a time when due to his sensory defensiveness he pushed our hugs away.

My heart battles feelings of envy. I envy typical families. I envy being able to go on vacations or attend functions with out the stress I feel about my son’s behavior. I envy other eight year old kids who can cope, be more mature, or have typical interests. I envy kids who participate in organized activities: sports, cub scouts, clubs, etc. I am envious of eight year old kids who have friends.

My heart battles feelings of grief. I grieve for my son and for how complicated and confusing life seems to him. I grieve for my dreams for my son. I grieve the typical family that I thought I would raise.

My heart battles feelings of loneliness. No one but my husband knows exactly how I feel.

My heart battles feelings of disappointment. As a parent there is that little part of you that enjoys hearing how your child is like you, I am disappointed because my son is not like me. I liked being involved in things, school was easy for me, I am friendly, etc. He is not like me.

My heart battles feelings of frustration. Even though I do everything I can to be a “good” caregiver and nurturing mom, it is still not working. He is still defiant, legalistic, rude, obsessive, etc. Sometimes I feel others are judging me for how I parent my children.

My heart battles feelings of exhaustion. My son requires a lot of energy.

My heart cries out for answers, for a cure, and for help.

My heavenly Father loves my son more than I can imagine or understand. He has a plan for my son’s life. He chose me to be his mother.

My heavenly Father supports me with loving family and friends who listen, cry, pray, and do everything they can to support us and help us. Even though I feel alone at times… I am not.

My heavenly Father wants me to be more like Him. The lightning in this storm reveals much about my pride, my desires, my sin, and my weaknesses and ultimately draws me closer to Him.

My heavenly Father longs for me to sit on his lap and bring my broken heart to Him.

My heavenly Father never promised me happiness. He promises joy even amidst my storms. I feel hope in knowing that He is in control and promises to work all things for good.

My heavenly Father’s plan may not be the same as mine. Do I trust Him with my storm? YES. I can’t imagine weathering a storm without Him.





Isaiah 25:4
"You have been a refuge for the poor,
a refuge for the needy in his distress,
a shelter from the storm
and a shade from the heat."

Discipline - It's Not Just For Kids

Just before Christmas we were at an event where Grant and I overheard a frazzled mother trying to get her boys to stop running around and acting crazy. She finally resorted to "Am I going to have to call Santa?" Even Grant thought that was really funny. I just saw her again the other day and the boys were again acting wild. I wonder what she will use to threaten them now that Christmas is 11 months away?

Discipline is something that we think about a lot as parents. We know how important it is for our kids. There are a million and one experts out there with all kinds of opinions, books and advice on what's best - and I doubt that threatening to call Santa is at the top of anyone's list!

Well, I'm no expert on discipline but I think some expert needs to remind me how important it is to be disciplined as an adult, parent and Christian. I was reading 1 Corinthians 9:27 and then I heard it in the the New Living Translation. It says,
"I discipline my body like an athlete, training it to do what it should. Otherwise I feel that after preaching to others I myself might be disqualified."

There are a lot of days that I don't feel like getting out of bed, making breakfast, making school lunches, doing laundry or getting dressed. I don't want to get up and help Annie put her snow boots on for the 15th time for no apparent reason. I thought I was just tired (and I probably am!)

I don't want to get up early in order to get my devotions in. In fact, I don't want to do them at all. What do I want to do? Take a nap, sleep in, eat some ice cream and watch TV. So life quickly becomes a mess! Nothing gets done, everything and everyone in disarray and I am frustrated.

So I've been thinking about that verse a lot. Have you ever seen someone train for a marathon? I think they are kind of crazy but I bet they have to keep on running even when they are out of breath and their legs feel like rubber. I have to force my body into doing what I have to in order to serve God and my family. It's easy to let feelings of stress and tiredness turn into laziness.

I seriously thought about not having any Bible Studies this spring because it is A LOT of work and I don't feel like doing it. I realized that is the one place outside my family that I really feel like God wants to use me. And it is something I can do at this stage of my life - it's at my house and the kids can be here. But I do have to clean up and make coffee and I'd rather not most mornings!

I know rest is important too. I've been doing some studying on rest and I haven't quite figured it out yet. Maybe I'll have more to write on that in a few days. There are certainly times we must say no. But a lot of times rest seems to be resting in God to meet our needs. Often when I go out on a limb to serve Him, he provides the strength and energy that is needed. And often I end up feeling refreshed from my service. There are also times when God provides extra rest through Mike or a friend helping me out with the kids and giving me a break especially after some service that has been an extra drain on me.

Rest is a part of discipline. When I stay up too late because I want to "relax" I'm not being disciplined. The truth is there are times that I could use for physical rest that I foolishly waste! So obviously there needs to be a balance. But I need to be disciplined in my spiritual life so I don't fall apart and I need to discipline myself to meet the needs of my family even when I don't want to. And if I would be more disciplined, those needs wouldn't pile up and become such a burden to meet (like 10 loads of laundry)!

I'm pretty sure I won't ever become a marathon runner, but with God's help I can keep on doing the things he has called me to. I don't want to try to teach my kids discipline without doing it myself - I think that might disqualify me.

1 Corinthians 9:27
"No, I beat my body and make it my slave so that after I have preached to others,
I myself will not be disqualified for the prize."

Proverbs 23:23
"Buy the truth and do not sell it;
get wisdom, discipline and understanding."

Disappointment and Hurt

I consider myself to be a good mother. The kids are one of the top priorities in my life and life does tend to revolve around their needs. I know I will have to help them face and deal with disappointment in their lives. It seems like it will get harder as they get older. I can remember disappointment in my life growing up through friends, missed opportunities, and not making the team. So I guess I have some experience and can empathize. But it never really crossed my mind that I would at times be the CAUSE of disappointment and hurt in their life.

I'm not talking about the kind of hurt or disappointment that comes when you accidentally slam your sons hand in the sliding door of the van. That hurts, but I don't think that physical pain is anything compared to the heart hurt that our kids are exposed to.

One night we were all busily making notecards and Grant got this great idea to make a card for Mike. It was adorable it said, "Merry Christmas, Thank You For Being Our Paster!" He wanted to meet with the Elders of the church to plan to get everyone to sign it. Once he gets an idea in his head there is just no talking him out of it. With all my motherly compassion, I quickly dismissed the idea and swiftly broke his heart. His eyes filled with tears and he didn't want to help anymore and went off to his room. I felt horrible. If I make one of the girls cry it isn't too big of a deal because they do it all the time, but our laid back boy hardly ever has an emotional breakdown. Anyway, we worked it out and he had a plan which I think we all forgot about in the midst of the Christmas frenzy anyway. Nevertheless, It was an eye-opening experience for me.

At times I can be the cause of hurt and disappointment because I am tired, busy or thinking of other things. It is so easy to flippantly put down an idea or story just because it seems insignificant to me and I'm too busy to stop and pay attention. Or at times I get mad and yell over something, like a muddy shoeprint on the floor, that just isn't a big deal. All those times are so frustrating to look back on because usually the kids are just innocent victims of my bad mood or inattentiveness. I realized that I have to pray for help to not act on my emotions. And to not be so into what I am doing or listening to on the radio that what they have to say or need sets me off. (and of course there are times when they need to learn to wait).

There will also be times when I HAVE to cause disappointment. They may want to do something that is wrong or will hurt them. Sometimes leading them towards Christ will require no's that will be disappointing at the time. I have to learn to accept that as the parent I can't just be their buddies and let anything go. That's not what is best for them.

I want to be able to hug them when they are disappointed, hurt with them and encourage them. I want to not disappoint them myself whenever I can. But ultimately I guess I need to teach them to have faith in the One that will never disappoint them. He is never to busy or snaps back because He's in a bad mood. He understands their feelings and thoughts more than anyone else. This is another place where we want to run into Jesus' gracious arms. I think I better do that too because disappointment and hurt do not magically disappear when you turn 21. And I know drawing on His strength is the only way I can attempt to avoid causing those things in my kids.

And Jesus is the only one who can help me deal with my disappointment in myself when I mess up. He is the great healer and comforter which I need a lot of because it seems like I am blowing it all the time. This is such a big job and so important to me, but in order for it to work I need to rest in God's hands. Why I keep trying to do it on my own is beyond me!


Romans 5:3-5
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.


Psalm 42:5
Why are you downcast, O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.

Normal

Ahhh, it's the first week in January and as fun as Christmas is, it's always a bit of a relief to get back to "normal". It feels like we put an addition on the house when we get the Christmas tree out every year. New Year's Resolutions (mine is to faithfully blog every day!) and what is it about Rubbermaid bins in January? I just want to buy lots of them and get organized. Nothing makes me happier at this time of the year than putting all my stuff in a plastic box and stacking it in the basement. Mike thinks I am totally insane.

There are not that many times in my life that I have felt really glad to be called normal, but last month I thought it was great. When we had our first ultra sound in December they found a cyst in the baby's brain. My doctor mentioned it and suggested that it might be a sign of Down's Syndrome but wanted us to meet with her partner who is a specialist. So we had two weeks to wonder and think about the what if's and why's.

Times like these are really telling of our faith. I SAY that I want God to be in control of my life and trust him with everything, but when things come up that don't seem to be according to plan I start to realize that actually I want to be in control and that it is difficult to trust God in a path that is uncertain and hard.

How do I give everything over to Him? But as I was thinking about it, I realized that I cannot possibly be in control nor would I want to be. Even if I took my prenatal vitamins every day, only ate organic food, exercised regularly and did absolutely everything "right", ultimately there are still risks involved in pregnancy (and life). We can't control that. So I'm thankful for a faith where I can trust the One who is in control. The path that I would choose wouldn't necessarily be what is best. Most people say they have grown and learned the most through the difficult times in their life and I would have to agree. Is it really walking by faith if I know everything is going to turn out perfectly according to me?

It's been very humbling to realize that I need to rely on Jesus. Even when the future is unclear (and when isn't it?) my job is to honor and glorify God with my life. What better way to show my kids and those around me what the Christian life is truly about than to glorify Him in the good times and the hard times. I haven't had too much experience in this area but the only experience I think I need is that of putting my life in His hands every day, whatever comes my way. That way when the murky unknown path comes, I should just keep doing what I've always been doing.

So, when we had our follow up ultra sound with the "specialist", she said they were actually not looking at Down's Syndrome, but Trisomy 18 which is fatal. But the cyst was gone and there was no heart defect which almost always goes with it. She said it happens that the cysts can resolve themselves because the brain is changing and developing so fast at this stage. Of course, there is always a risk, but she gave us a "normal". No doubt we were relieved, but even more than that I am thankful for God showing me areas where I need to rely on Him. Whatever the outcome of any situation in my life, I will praise and glorify Him. I will follow in faith even when it is foggy and hazy before me. The funny thing is, what other choice do I have? I can trust in the doctors, the ultrasounds, the vitamins, the parenting books; or I can trust in the God of the Universe. It doesn't seem like a hard choice.

I better go pack up my Rubbermaids!

Romans 3:3
What if some did not have faith? Will their lack of faith nullify God's faithfulness?

Why Is This So Hard!

I've had several people tell me that they are feeling totally overwhelmed with two kids and didn't know how I could keep up with 4 1/2. I've been thinking about that because I have felt overwhelmed at each stage of parenting.

Having a brand new baby for the first time is tough because it is all so new and you aren't used to living your life for someone else. The second baby is a kicker because it is totally overwhelming to double the work but at the same time it is really exciting because you know how great the first baby is. But your hands and days are full, and you are exhausted.

After I had baby number 3 a few things clicked in my head and heart and I think that's why it almost feels easier now (I said ALMOST). I think with one or two kids you still feel like you should be able to do it all. Have them and you dressed perfectly, have a spotless house, get to every function you used to, do all the shopping and laundry in a timely manner with a toddler and infant in tow, and possibly still have a career. After number three came along I realized I could not do it all. I had to let go of some things. There are days the kids are in their pajamas or a diaper all morning, there are (I'm ashamed to admit this) weeks that go by and the floor doesn't get mopped, or at times I send Mike to the grocery store with a list because we only have some old lettuce left in the fridge. And as hard as it was to let some of those things go, I guess I really didn't have a choice. It was let go or go insane!

If there is going to be any time for enjoyment or play with the kids, some things have to wait. I always want to have the house clean when they get home or before a holiday but guess what - they don't care! I still try to live in a clean and welcoming home but don't sweat it anymore when there are crumbs on the floor for a little while so I can do something important like read Goodnight Moon again or play legos. So, I guess I learned that I can't do it all - unless I can go with no sleep because if I utilized the time between 11 p.m. and 7 a.m. better I could probably get a lot of cleaning and laundry done.


I also learned to choose my battles better with the kids. In some ways I've "quit sweating the small stuff". The other day Annie ran away from me mid-diaper change. I told her to come back and she crossed her arms, cocked her hear, furrowed her brows and glared at me. Now if my older two had done that I would have been irate, but I just started laughing. That is not how I should or would handle it normally (She does need to obey) but it was kind of cute and we still got the diaper changed. I felt a lot less stressed. I don't mind if nap time gets missed or changed anymore. My friend (a first time mom) refered to herself as the Nap Nazi! I just love that. I used to be that. There was no way anything could get in the way of nap time. (Usually it was because I needed a nap too). Well, now life happens and there are days it is late, non-existent or in the car.

We made gingerbread cookies last night. It was a total mess and everyone wanted to help. In the middle of it all we had to have supper. I found myself getting kind of irritated. But it was the process of doing it that was important, not how cute the cookies turned out or how messy everything was (there was green frosting everywhere!) It was something the kids wanted to do and we had fun doing it together. They were excited to have the finished product in their lunches today. I'll finish cleaning up this afternoon hopefully!

Don't get me wrong, I'm all for a clean house, routine, showers (for me) and discipline but when you have kids life can't always roll the way we planned. So going on to five kids in the house I just have to realize that there will be messes, chaos and hopefully fun. I think when I was trying to do it all, I was miserable and it made my family miserable.

So don't let the overwhelming feeling of dealing with your kids and responsibilities get in the way of enjoying the time. Find the things you need to loosen up on or let go of or get help with! My older ones that had me overwhelmed are in school full-time already! Those years went by in the blink of an eye. I don't look back and wish everything had been perfect, I'm glad for the time we spent together.

Ephesians 2:8-10
"For it is by grace you have been saved, through faith -
and this not from yourselves,
it is the gift of God -
not by works, so that no one can boast.
For we are God's workmanship,
created in Christ Jesus to do good works,
which God prepared in advance for us to do.