In the Trenches

Today is just one of those days, the kind with a slow start that keeps hitting a dead end repeatedly.

Bear is now officially off her seizure medicine, and the sleeplessness has kicked into high gear. (I think I did better when I hardly ever slept more than 3-4 hours. The occasional night of 6-8 hours of sleep is knocking me around.) Bug woke up grouchy and demanding after I had managed to accumulate 3.5 hours of sleep throughout the night. She then proceeded to wake the rest of the house with her expansive use of lung power. It's been a battle ever since.

Bear was so tired she didn't eat lunch before asking to go to bed. Bug, however, just became more and more overstimulated. I spent 20 minutes as a human weight blanket getting her calm only to have her start all over again the moment I got up.

It's days like this when I cling to the knowledge that God knows and cares all about me and the very details of my life.

Matthew 10:29-31 says, "Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.  But the very hairs of your head are all numbered . Fear ye not therefore, ye are of more value than many sparrows." This is also repeated in Luke 12:6-7.

Do I always like being in the trenches? No. Is it worth it? Yes. God gave me these babies not only to care for them but also to refine me, and I've got a long way to go. 

The song "Refiner's Fire" by Brian Doerksen comes to mind at times like this.

 

Verse 1:

Purify my heart
Let me be as gold and precious silver
Purify my heart
Let me be as gold, pure gold
 

Chorus:

Refiner's fire
My heart's one desire
Is to be holy
Set apart for You, Lord
I choose to be holy
Set apart for You, my Master
Ready to do Your will
 

Verse 2:

Purify my heart
Cleanse me from within
And make me holy
Purify my heart
Cleanse me from my sin
Deep within

How is your day in the trenches going? Don't forget that He knows all about you, too. Maybe that problem you're having at work, with your spouse, or with your children should be looked at as an opportunity to grow to become more like Him. 

No Toothbrush

Bear has been seizure free for 2 1/2 years, and we are finally beginning the wean off of her seizure meds. Because Bear's seizures were not easily treated, her neurologist has been reticent to take her off the meds too early. Her EEG's for the last year have shown as normal but sluggish. In other words, the meds are keeping her brain calm to prevent seizures, too calm.

Her language development has been the biggest hurdle of all, and we believe it is her struggle with language that has propitiated the aggressive tendencies she has. (She has been able to learn some sign language, but this is also quite slow for her.)

Since we started weaning her off in April, she has become increasingly more alert and able to vocalize needs and wants. We try to reward her use of words by giving her what is requested though we do have to reign in the requests for "cookie" and "oc-late" (chocolate). This morning she told our aid "no toothbrush." Isn't that awesome! We had to let her know that teeth brushing was not optional, but we really appreciated her words. We are so excited for this development and can't wait to see how she'll take off once she's completely off the meds!

Encouragement

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.  Philippians 4:8

As a mom, encouragement is something that is easy to give and hard to receive, but it is sometimes desperately needed. I've had women tell me that I am such a good mother or that I am so strong and patient, and honestly, I smile politely and say thank you all the while thinking, "You don't know. You don't hear how often I lose my temper, how frustrated I get about things that seem to be nearly unchangeable."

In my state, when a child can not be cared for outside of an institution, should the parents not be doing it, they can qualify for a certain amount of extra caregiver time within the home. That is to say, I have an aid that is with me five days a week to help out with Bear's needs. It took a LONG time to admit that I needed help, but finally last spring I did. Our first aid was happy but wholly unreliable, and then we met J. J is a gift straight from God. She is a young Christian lady who loves my munchkins, and she is calm but firm with them, and though she frequently bears the physical marks of  the outbursts of my youngest, she always has a smile in her heart and on her face.

Because J is with me daily, she witnesses my shining and not-so-spectacular mommy moments. On Mother's Day she brought tears to my eyes with this text message:

Happy mother's day! You're such a strong loving person. Your kids are very blessed to have you as their mama. You're like a warrior in the mom world. Have a great day and soak in whatever relaxing time you can! :)

It absolutely amazes me that someone who sees me day in and day out can say such wonderful things about me as a mom. Sometimes I feel so defeated in thinking if only I were more patient, if only I didn't have that A-type personality, if only, if only... Then I remember that's exactly what the evil one wants. He wants me to compare myself to other moms so that I will become discouraged. He wants me to give in and give up on my calling to raise my children in the nurture and admonition of the Lord. (Ephesians 6:4)

Sometimes, when Bug is frustrated with the world, she will announce that I am not her parent any more, and then she asks for me to tell her this story.

When you were born, God saw that you needed a momma. He looked out over the whole world and found me. He said, "Will you be her momma?" I said, "Yes." Then God looked at your daddy and said, "Will you be her daddy?" He said, "Yes." You see, God gave us to you and you to us. So no matter how frustrated you are with us or we with you, we will always love you, and we will always be there for you."

It's not just a story; it's the truth. God did speak to my heart and say, "Will you do this?" "I want to, God, but I'm not sure I'm able." His assurance came to me through scripture.

I can do all things through Christ which strengtheneth me. Philippians 4:13

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9

When the shadows of doubt fall, I need to remember that it is only in His strength that I continue on. He doesn't want someone who already knows everything to raise these children; He wants someone who is desperate to learn from Him. A fellow mom shared this verse with me, one that I had never really noticed before: There is therefore now no condemnation to them which are in Christ Jesus, who walk not after the flesh, but after the Spirit. Romans 8:1

God doesn't condemn me for my daily slip-ups, rather He urges me to seek Him. He doesn't want me to focus on the negative, but rather on that which is true and right. He loves me and has called me to share that love with my children.

To anyone reading this blog, thank you for any encouragement that you have sent my way, and if you are daily or even weekly entering into someone's world, take the time to speak encouragement into their lives. Remind them that Our Father does see, know, and loves them unconditionally.

Helping Them Understand

When Bubba is tired, he sits, he lies down, he relaxes, not so for Bug and Bear.

When Bug is tired, she seeks out more and more stimulation until her brain is so "jazzed" that she is no longer in control of herself. Sometimes, it's a hard thing as a parent to force your child to take time to be quiet. She will scream and wail and throw things as you gently try to put her to bed. The blankets have to be applied in the right order with just the right amount of light and noise. You hear the pitiful cries, all the time knowing that this is what she needs, and you leave quickly before things escalate again. Usually, after twenty minutes or so of forced quiet, she is back to her happy self, almost unrecognizable from the person she was just a few minutes before. She has been this way since she was only a few months old. One of the biggest things we work with in therapy is getting her to recognize when she needs a break before the explosion occurs.

Bear becomes violent when tired. She scratches arms and faces and pulls hair when she needs a break. Bear has very few words, and her frustration usually comes out in a more physically aggressive way. Bear does not like to be laid down, or enjoy routine like Bug; rather she simply needs to be isolated from everyone else for a while. We put her in her room where she will play quietly for several minutes until she's ready to join the world again.

One of the main things I am learning as a special needs momma is how to help my girls recognize their own emotions. Self-control is a much harder lesson, when they cannot understand the effect their actions have on others in those moments of complete melt down.

I know God designed each of my babies in such a unique way. I am so privileged to be their momma and help them each find God's purpose in their lives even if it's just the little bitty things like helping them to understand that we all need rest.

Perspective

Sometimes, we all need a little perspective. You know how it is. We all have those days when the five-year-old can't seem to remember what you've told him for a nano second, the four-year-old is alternately screaming at the top of her lungs and crying every five minutes, and the baby keeps removing her diaper in order to be able to smear its contents around the room.

I don't know about you, but I can easily find myself having my own little pity party on those kinds of days. That's when it's important to have a little perspective. Sure Bubba is absent-minded, but he's so very caring towards his sisters. Bug's emotions can swing from end to end, but when she lands on happy, she wants to share it with the whole world. Hey, at least Bear is learning that she doesn't like a dirty diaper.

Recently, I've been learning perspective from a friend I have gotten to know a bit through the preschool weekly reading time at our local library. This dear sister in Christ is a shining example of how we should run to our Heavenly Father when things don't go the way we had planned. Denise is the mother to three young boys having previously lost her little girl to a debilitating disease. Her youngest son has undiagnosed (not for the lack of trying) mitochondrial disease and has been put on hospice at this time. Short of a miracle, her little boy may never be more than two years old.

She blogs regularly about the baby's condition (http://shaunsteyaert.blogspot.com/), and her posts are always full of praise for the gifts that God has bestowed upon her. Even in the days of grief, she is able to find solace in the knowledge that soon her boy will have eternal healing and will be walking, talking, and playing in heaven with Jesus.

This was the status she shared on Face book one January day.

"'Fear not for I am with you. Be not dismayed for I am your God, I will help you I will uphold you with my righteous right hand.'
~Almighty God, Isaiah 41:10
Thank you, God, for seeing us through our days, hard or easy, sad or happy. Thank you for knowing what is in our hearts even if we don't say it, forgiving our weaknesses and loving us the same. Thank You for hiding us under Your wing, holding ...us when we need comfort, and listening even when we are angry. Abba, Father, I love you and thank you for my storm. Refine me and our family so we may be what you designed us to be. Give me patience, wisdom and grace. Stay with me through it all, as I know You are, and may I honor You through the trial. Amen."

 

How many of us thank God FOR the storm? We always want a way to avoid the storm or to get out of it as fast as possible. I thank God for women like Denise, women who teach me more each day about completely and fully relying on the Creator of the Universe.

 

So, in those days when toddlers or teenagers are driving you crazy, would you join with me and grab onto a little perspective. Let's thank the Lord God for the gifts we have, and realize that sometimes the storm is just what we need.

 

It's Not Just Me

Sometimes, when your kiddo's special needs are social/emotional, it's hard for others to understand what you're going through. Bear's difficulties are more obvious, with medical explanations to accompany most of them, but it's not so for Bug.

Bug's anxiety issues leave her inflexible and controlling, a combination that easily can take over the atmosphere of a family. After a few rough incidents a couple of weekends ago, I spoke with her therapist about possible things we could do to help curb these behaviors. It was pretty interesting when the therapist told me that Bear was a much easier case for her. With her developmental delays, she's a pretty text-book case. However, Bug has her puzzled. She's just not exactly sure where we should start in order to help her. Sometimes it's nice to know that it's not just us, that we are not the only ones who see the daily struggles she has within herself and with the world around her.

This is the song that often runs through my head when I get a bit overwhelmed by our circumstances.

"One Day At A Time"
(Marijohn Wilkins/Kris Kristofferson)

Verse 1
I'm only human; I'm just a man(woman)
Help me believe in what I could be and all that I am
Show me the stairway
I have to climb
Lord for my sake
Teach me to take
One day at a time

Chorus
One day at a time, sweet Jesus
That's all I'm asking from you
Give me the strength to do everything that I have to do
Yesterday's gone sweet Jesus
And tomorrow may never be mine
Help me today
Show me the way
One day at a time.

Verse 2
Do you remember
When you walked among men
Jesus, you know when you're looking below
It's worse now than then
Pushin' and shovin' crowdin' my mind
Lord for my sake
Teach me to take
One day at a time                                 

Why We Homeschool

I am a professional educator by trade. I have taught in both public and private schools. The plan had always been to stay home with the children until they were old enough to go to school, and then, like millions of other families, we would send them off to our local public school, and I would go back to work. Then we met our children.

Bubba is gifted in mathematics and engineering, has a very tender heart, and loves to talk about Jesus, but he is wholly unmotivated in many other areas. He is also generally quiet and compliant. When we thought about his future school life, we saw him as that kiddo who never really gets noticed, but merely passes the time each day, unfocused and bringing home "good enough" grades.

Bug is gifted in language and seeing the big picture. She is very polite and loving, but she frequently does not recognize social cues, and her anxieties lead her to be very controlling. When we thought about her future school life, we saw her as the kiddo who spent most of her day traveling between the hall outside of her classroom and the principal's office.

Bear is a happy, social child, but her developmental delays left us wondering about the quality of education she would receive. We wanted more for her than just learning to hold her spoon or being labeled as part of the "baby class".

Then we began to consider homeschooling as a possible option. We prayed about it and discussed it for some time, while gradually beginning an at home routine that focused on preschool-like skills. We spoke with other homeschoolers and reviewed homeschooling laws, and finally decided to take the plunge.

We are only just completing our first homeschooling year, but it's been wonderful. In a world of everyone for themselves, my children are finding out that looking out for the other person is equally, if not more, important. We see the way Bubba uses his tender heart to focus Bug's anxiousness, and we know we made the right choice. We see the way both of her siblings praise each developmental step Bear takes, and we know we made the right choice. We see the way our children are learning to see God in all parts of their daily lives, and we know we made the right choice. I'm so glad we decided to allow God to change our plans and our hearts.

Stepping Down

Growing up, I often heard my mother say that people needed to just learn to say no because there's only so much you can do. Albeit unwittingly, my mother set the bar for busyness very high. She worked a full time job while caring for a husband and six children, played the piano for church, served on the PTO/PTA at the local elementary school, and frequently sought out what she could do for other people.

So, when I became the mom, it was only natural that I should be able to homeschool, lead Bible study, plan the music portion of the worship service, sing on the worship team, and volunteer to help out whenever and wherever I could. The only problem is that I'm not my mom. I'm not even remotely an even-tempered, go-with-the-flow kind of girl. More often than not, I see myself as a failed perfectionist, quite the conundrum, I assure you.

Several months ago, I spoke with a dear friend who also has adopted children, and during that conversation she told me how she and her husband had to step back from being involved in their church other than to attend services in order to focus on their eldest son. While I could appreciate her rationale, I truly didn't understand why it would be necessary, that is until recently.

For several months, I have known that our schedule was getting too hectic: four hours at church on Sundays including set-up and tear-down since we are part of a church plant that meets in a school, occupational and physical therapy for Bear on Tuesday mornings, library for Bubba and Bug on Tuesday mornings, Bible Study at our home on Tuesday evenings, AWANA at a sister church on Wednesday evenings, occupational therapy and speech for Bear on Thursday mornings, not to mention doctor appointments and the fact that both Bug and Bear now have ABA therapy three times a week at our home. However, I did not want to give up what I was doing. It's not like I was spending time scrapbooking or cross-stitching. I was doing things like planning worship services and preparing Bible studies. How can that be bad?

Then I looked at my children. My children, who were getting fussed at for not being still during the church service when they'd already been there nearly three hours. My children, whom I became aggrivated with each Tuesday afternoon because their toys were all over the house; didn't they know we had people coming over? My children who desperately wanted me to see the next level they had reached on their online reading program, but I was too busy making sure the music would flow with the scripture the pastor had chosen for his sermon. Then I looked at my children and remembered that "Children are an heritage from the Lord." (Psalm 127:3) Being a mom is not about being busy, even in church life. It's about raising children who learn to love God because that is what they have seen in you.

So, I'm stepping down. My hubby will still be helping with setup each Sunday, but the children and I will try to enjoy a nice snuggle before we head out to Sunday School. You'll still hear me singing songs of praise planned by someone else, but I'll be sitting with my children. In a couple of months, this Bible study will be over and the new one starting will be at someone else's home. For now, I need to just be a mom, a busy one to be sure, but one who is focusing inward on her family.

You know, I had a talk with my own mother the other night, and she very gently informed me that when we children were little, she was not so busy. She was just our mommy. Maybe I can be like my mom after all.

Maple Syrup and Hiking

When you're a homeschooling mom, everything becomes an opportunity for learning, and when you have special needs kiddos, those opportunities can bring big challenges.

We went to a state park in Maryland this weekend to observe maple syrup making. Being from South Texas, and a stranger to maple trees, I was fascinated. During the demonstration, Bear reached out and pulled a little girl's hair. (Bear is on the autistic spectrum and very developmentally delayed, and while she is generally a happy child, she is quite aggressive.) Unfortunately, we were all watching the demonstration and didn't see her zoning in on the long, red hair of the unsuspecting ten-year-old. She doesn't let go easily, and by the time we got the other girl free, she was in tears. Hubby had to remove Bear from  the area. Sometimes the only thing that settles her down is being seatbelted into her car seat, so there she went.

Bubba, Bug, and I continued to watch the demonstration until Bug became overwhelmed by the sensations of the smoke, fire, and growing crowds. (Bug has anxiety and sensory issues, so adjustments often need to be made quickly.) We decided that we would get Daddy and Bear and go try our hand (feet) at hiking.

Our first hiking trip and Bubba led us up, up, up the advanced course. I was a bit opposed at first, but sometimes you just do the things the "regular" kiddo wants to do just so he feels important, too. About a fourth of the way into the hike, Bear decided she was no longer walking. She's about 36 pounds now, and that gets heavy fast, especially when your climbing over rocks and trees. Hubby went ahead with Bubba and Bug at one point, and Bear and I lost the trail. To the right, it looked like no one had ever gone, but to the left, it looked nearly impossible, especially with a three-year-old on your back. After hemming and hawing a bit, I headed to the left, and little by little, I got us down into an opening where I looked up and saw my dear hubby and older kiddos coming back for us. I was so relieved, especially when he started carrying Bear again.

The waterfall we hiked to was beautiful. We did have a few more instances with other children and pets as we looked at the falls, but they were minor. We took the easier path back to the car and just enjoyed the rest of our day together.

I used to be one of those people. You know, the kind who look at an unruly, loud, tearful, or aggressive kiddo and think what is wrong with those parents. Don't they know that you have to start training children early so they don't turn into brats? Well, I take back every mean-spirited thought I've ever had in that vein. Sometimes, that is the best behavior the kiddos have been able to muster in days. Maybe they're overwhelmed easily. Maybe it's your perfume, the brightness of the lights, or the temperature that has set them off.  I promise you, we're doing the best we can. We might not always be able to participate like everyone else in places where it's noisy or crowded, but I'm glad that my family can still enjoy each other.

The Moving Story

So I was about seven months pregant with our first child when my husband decided it was time to look for a new job. What was he thinking? Being that it was another government job, the process drug on for months.

Meanwhile, I was able to start attending my first ladies' Bible study. (The church we were attending always held these during the daytime, and as a teacher, that didn't fit into my schedule before I became a full-time momma.) The Bible study we were doing, Discerning the Voice of God by Priscilla Shirer, kept talking week after week about following God's leading. God told Abram to leave his homeland and go. God told Ruth to leave her homeland and go. I began to question whether my husband might actually be right about this job change thing.

Then one October day, on the way to lunch after Bible study, my young son was crying in frustration in the backseat. I tried to give him his pacifier. Unfortunately, he had a rattle in his mouth that he just wouldn't take out. I told him, "You'll have to get rid of that rattle before I can give you your pacifier," and it was as if God suddenly said to me, "You'll have to get rid of what you're holding onto before I can give you what you really need." I called my husband and told him that I knew we were indeed supposed to be taking a new job and moving on, and one hour later that job that he had been waiting on since May was offered to him.

Since that day, I have been a better listener to the wisdom God gives my husband. I'm not perfect at it, but when the Lord keeps offering you sign after sign, you have to wake up and pay attention.

Available

My husband and I have been married for 18 years, the last six of which have been one rollercoaster after another. We have three children: Bubba (5), Bug (4), and Bear (3). My girls, the youngest two, are adopted, and each have special needs, and living with these has made us refocus from a life of long range planning and goals to living just one day at a time.

We are also embarking on the journey of homeschooling. As a former public and Christian school teacher, this is not exactly where I thought the Lord would lead us, but I am glad he did. (I'll talk more about this later.)

We were living in Texas, and I was about seven months pregnant with our first child, when my husband felt led to find a new job. So when our newborn was four months old, we packed up everything and headed to Colorado. (I wasn't super keen on the idea at first, but that's another post.)

A year later, we received a phone call telling us that our oldest daughter had been born, and would we be willing to care for her while her biological parents worked on some things. That year was a bag of mixed emotions. At first I didn't want to care too deeply for this beautiful tiny angel; it was only going to be temporary after all. But one day, after a heart-to heart with Jesus, I realized she needed a full-time mommy, no matter how temporary the situation might be. Fifteen months later we finalized her adoption and were so proud to finally legally call her ours.

Meanwhile the biological parents had a second daughter who also came to live with us. At five and half months old, she began having seizures. The particular kind of seizures were known as infantile spasms, which most pediatricians are unfamiliar with and frequently misdiagnose as reflux. Life suddenly changed. Of my three kiddos, the oldest was still two, and life was now a maze of doctor's appointments and hospital stays. It was several months before we got her seizures under control, and they took quite a toll on her little brain. She lost all developmental abilities and became like a newborn again. Of course she was now a twenty-one pound (a side affect of the steroid treatment) newborn, which made for some interesting situations. We promised to forever be hers shortly after her first birthday.

Then my husband's job moved to Virginia, where we are now living in a tiny hamlet west of the D.C. area where he works. I have learned to be available. That's all God really wants from us, just to be available. He might call us to foreign missions, or he might just call us to teach the Word to our own children, but we must be available.