I've come to the conclusion that I must have no pride.
I really am not easily embarrassed. I blame that on my dad.
When we were growing up he did all sorts of strange things with us in public just to desensitize us what anybody else thought of us. For example, if we were at the mall, he would coax us to sit down on a display and pretend we were one of the mannequins. Or we would walk around and speak in various accents...British, Spanish, Russian, Hillbilly...you name it. He might break into song at random while we waited in line at a restaurant or walked through a store. We just never knew what he was going to do next. And we learned not to care what anybody else thought and just enjoy joining in.
The result of this curiously fun upbringing is that I don't have an interest in the opinions of strangers.
This attitude was particularly helpful yesterday.
M had an audiology appointment at a major university's hospital in our area. The Reverend Husband dropped us off at the front while he began the long and arduous task of finding a place to park.
M and I made our way into the building and over to the doctor's office. I needed a pit stop before our appointment, and since we were a little early, we headed to the restroom. It was in the restroom that it happened.
I got one side of my skirt stuck in my underwear.
I didn't see it. The mirror in the restroom wasn't long enough to alert me to my faux pas, neither did I feel a strange breeze.
Clueless, off I traipse, out of the restroom, down the long hallway, past the receptionist's desk and out into the lobby.
I no sooner opened the door to the lobby than a woman across from me caught my eye and (I think) mouthed the word "Ma'am!" I wasn't sure she was trying to get my attention, so I kept walking through the lobby.
Thankfully, she got up and approached me and filled me in on the fact that I had given anyone in the hallway, the receptionist, and half the lobby a full on view of my behind.
What did I do? I thanked her ever so politely and removed my skirt from my undies right there in the lobby.
Then I gave a little smile and a wave.
Not really. But the words, "Smile and wave, boys. Smile and wave." from those penguins of Madagascar kept repeating themselves in my head.
And that was it. Incident over.
I don't even think I blushed.
Thanks Daddy.
Heather
"For I," says the Lord, "will be a wall of fire all around her, and I will be the glory in her midst." Zechariah 2:5
Saturday, October 15, 2011
Wednesday, October 12, 2011
Anxiety
Anxiety bites.
Having some deep unmet need that causes you to be fearful is upsetting to you and those who love you. Watching your children deal with this is disheartening.
One of the more difficult things about the adoption journey is sorting out where certain frustrating or strange behaviors come from. Is this behavior adoption related? Is it normal toddlerhood kind of behavior? Or also, in our case, does this behavior stem from the special needs we know our son has? It's quite a complex maze to navigate at times. It gets discouraging some days when doctors don't know and the questions keep changing as something "new" crops up.
I don't know if it's a neurological aspect of the special needs brain that causes the needs to change, or if it's just a function of our son's particular special needs. At any rate, it makes my head spin some days and some days I want to cry.
Today is one of them.
We seem to cross one hurdle or get one area under control only to find that another one has cropped up somewhere else.
So in this twisted journey of special needs adoption where so much is unknown, here's what I know:
My son was fearfully and wonderfully made by a loving God whose works are marvelous. (Psalm 139:14)
We are to be anxious for nothing, but in everything, by prayer and supplication, WITH THANKSGIVING, let our requests be made known to God; and (here's the best part) the peace of God, which surpasses all understanding, will guard our hearts and minds through Christ Jesus. (Phillipians 4:6-7).
Life is a vapor. We should not lose heart because our difficulties are for a moment and are working for us a far more exceeding and eternal weight of glory. For the things which are seen are temporary, but the things which are not seen are eternal. (James 4:14, 2 Corinthians 4:17-18).
In heaven, there will be no hearing loss. No epilepsy. No developmental delays. No Down Syndrome.
And heaven is closer than we think.
If we are believers, our children with these special needs give us a rare and precious glimpse into that future and cause us some days to long for home a little more.
If having children with these needs causes me to devote my life to the service of someone besides myself to the glory of God; if it causes me to long for heaven all the more; if it grants me daily glimpses into the heart of my Father should I only open my eyes to see Him, then these difficulties are worth it.
The difficulties are temporary. Heaven is forever.
Now that's something worth shoutin' about!
Heather
Having some deep unmet need that causes you to be fearful is upsetting to you and those who love you. Watching your children deal with this is disheartening.
One of the more difficult things about the adoption journey is sorting out where certain frustrating or strange behaviors come from. Is this behavior adoption related? Is it normal toddlerhood kind of behavior? Or also, in our case, does this behavior stem from the special needs we know our son has? It's quite a complex maze to navigate at times. It gets discouraging some days when doctors don't know and the questions keep changing as something "new" crops up.
I don't know if it's a neurological aspect of the special needs brain that causes the needs to change, or if it's just a function of our son's particular special needs. At any rate, it makes my head spin some days and some days I want to cry.
Today is one of them.
We seem to cross one hurdle or get one area under control only to find that another one has cropped up somewhere else.
So in this twisted journey of special needs adoption where so much is unknown, here's what I know:
My son was fearfully and wonderfully made by a loving God whose works are marvelous. (Psalm 139:14)
We are to be anxious for nothing, but in everything, by prayer and supplication, WITH THANKSGIVING, let our requests be made known to God; and (here's the best part) the peace of God, which surpasses all understanding, will guard our hearts and minds through Christ Jesus. (Phillipians 4:6-7).
Life is a vapor. We should not lose heart because our difficulties are for a moment and are working for us a far more exceeding and eternal weight of glory. For the things which are seen are temporary, but the things which are not seen are eternal. (James 4:14, 2 Corinthians 4:17-18).
In heaven, there will be no hearing loss. No epilepsy. No developmental delays. No Down Syndrome.
And heaven is closer than we think.
If we are believers, our children with these special needs give us a rare and precious glimpse into that future and cause us some days to long for home a little more.
If having children with these needs causes me to devote my life to the service of someone besides myself to the glory of God; if it causes me to long for heaven all the more; if it grants me daily glimpses into the heart of my Father should I only open my eyes to see Him, then these difficulties are worth it.
The difficulties are temporary. Heaven is forever.
Now that's something worth shoutin' about!
Heather
Wednesday, September 21, 2011
The love of my life...
Once upon a time, a young girl fell in love.
And though she was completely unaware at the time,
God was giving her a very special gift.
This guy is....
the love of my life,
the most Christ-centered,
Christ-like person I know,
patient,
gentle,
passionate,
loving,
committed,
and genuine.
His heart for his Savior and his family set him apart from all the rest.
This is what a godly man looks like.
I am blessed to call him mine.
Thank you, Lord for a man that loves You and
me and the children You've given us.
I am one blessed lady.
Heather
Saturday, September 17, 2011
Ponderings...
I've felt so incredibly blessed lately.
This time last year I was Swaziland, Africa being the hands and feet of Christ to children in great need. Part of me longs to be there now. Life is lived at a different pace there, and so many of the believers we met understand that life is not about living in ease. It's about living in a grace that is sufficient for every situation, every circumstance, every moment of every day.
It isn't an American christianity to be sure.
So, this week as I've been through my day to day routine as mama, homeschooler, pastor's wife I've just been a little more thankful than usual that I do indeed live such a blessed life. My life isn't blessed because it's always easy, stress free and doesn't require hard decisions, but because it's full of the really important things in life.
A loving, personal relationship with the Creator of the Universe whom I can speak to anytime, anywhere.
I have a beautiful family, built by God, Himself.
I have the privilege to serve alongside my husband at an awesome church.
I am able to stay at home with my children and still have a roof over my head, food on the table and a car to drive.
I am so very, very blessed.
And I am so thankful.
But I'm also convicted.
I'm convicted that sometimes I let these blessing lure me into a comfort zone and a routine that allows me to disengage from the culture around me. I don't have to come in contact with people that I don't know well, who believe differently from me, or who are needy unless I make that choice.
And I'm not sure that's always the road my Heavenly Father would have me walk.
Recently, I've had the opportunity to be in several public schools.
Malachi is attending a preschool for special needs children through the public school system.
Our church has been feeding one of our local football teams prior to games, and the reverend husband has had the opportunity to share a message with the team after these meals...in the public school.
I mean, in the cafeteria, in the public school. Preaching the gospel. In the name of Jesus. Unashamedly. (But that's another post!)
But each time I'm in one of these schools, I feel absolutely at home.
At peace.
Like I belong.
Not sure what that means. Maybe nothing. Maybe it's just familiarity because I tagged along with my school teacher dad at his school from the time I was small and then taught high school myself for a while before Samuel was born. Or maybe it's because I loved everyday I spent going to a public school (except for the whole sixth grade).
But I haven't been in a school in 8 years, and I still feel at home there. Truthfully, part of me misses it.
And as I was driving away from the school today after feeding the team, I passed a mom driving onto campus, presumably to pick up her high school student.
The look on her face nearly stopped me in my tracks. She looked absolutely lost. She had dull, dead, hopeless, lifeless eyes and and wore an empty expression.
And I begin to think how different her day to day life must look from mine. And I began to think about how, if I'm honest, I pass any number of women like her on a regular basis.
And what am I doing to make sure this woman, and those like her, have the chance to hear the glorious, hope-filled gospel of Jesus Christ? Who does she come in contact with that shows her that there is abundant life in a relationship with Christ even when everything going on around us stinks?
She doesn't come in contact with me because, I'm busy living my very sheltered, blessed life.
It's a real dilemma for me. It probably has been for going on close to a year now.
I'm not sure what the answer is.
I have some inklings, but none of the changes I may be asked to make come without a great deal of personal risk. Risks I have been afraid to assume because taking them leaves me largely out of control.
And I have control issues.
Don't we all?
But the wind is a blowin'. And Aslan may be on the move.
Heather
This time last year I was Swaziland, Africa being the hands and feet of Christ to children in great need. Part of me longs to be there now. Life is lived at a different pace there, and so many of the believers we met understand that life is not about living in ease. It's about living in a grace that is sufficient for every situation, every circumstance, every moment of every day.
It isn't an American christianity to be sure.
So, this week as I've been through my day to day routine as mama, homeschooler, pastor's wife I've just been a little more thankful than usual that I do indeed live such a blessed life. My life isn't blessed because it's always easy, stress free and doesn't require hard decisions, but because it's full of the really important things in life.
A loving, personal relationship with the Creator of the Universe whom I can speak to anytime, anywhere.
I have a beautiful family, built by God, Himself.
I have the privilege to serve alongside my husband at an awesome church.
I am able to stay at home with my children and still have a roof over my head, food on the table and a car to drive.
I am so very, very blessed.
And I am so thankful.
But I'm also convicted.
I'm convicted that sometimes I let these blessing lure me into a comfort zone and a routine that allows me to disengage from the culture around me. I don't have to come in contact with people that I don't know well, who believe differently from me, or who are needy unless I make that choice.
And I'm not sure that's always the road my Heavenly Father would have me walk.
Recently, I've had the opportunity to be in several public schools.
Malachi is attending a preschool for special needs children through the public school system.
Our church has been feeding one of our local football teams prior to games, and the reverend husband has had the opportunity to share a message with the team after these meals...in the public school.
I mean, in the cafeteria, in the public school. Preaching the gospel. In the name of Jesus. Unashamedly. (But that's another post!)
But each time I'm in one of these schools, I feel absolutely at home.
At peace.
Like I belong.
Not sure what that means. Maybe nothing. Maybe it's just familiarity because I tagged along with my school teacher dad at his school from the time I was small and then taught high school myself for a while before Samuel was born. Or maybe it's because I loved everyday I spent going to a public school (except for the whole sixth grade).
But I haven't been in a school in 8 years, and I still feel at home there. Truthfully, part of me misses it.
And as I was driving away from the school today after feeding the team, I passed a mom driving onto campus, presumably to pick up her high school student.
The look on her face nearly stopped me in my tracks. She looked absolutely lost. She had dull, dead, hopeless, lifeless eyes and and wore an empty expression.
And I begin to think how different her day to day life must look from mine. And I began to think about how, if I'm honest, I pass any number of women like her on a regular basis.
And what am I doing to make sure this woman, and those like her, have the chance to hear the glorious, hope-filled gospel of Jesus Christ? Who does she come in contact with that shows her that there is abundant life in a relationship with Christ even when everything going on around us stinks?
She doesn't come in contact with me because, I'm busy living my very sheltered, blessed life.
It's a real dilemma for me. It probably has been for going on close to a year now.
I'm not sure what the answer is.
I have some inklings, but none of the changes I may be asked to make come without a great deal of personal risk. Risks I have been afraid to assume because taking them leaves me largely out of control.
And I have control issues.
Don't we all?
But the wind is a blowin'. And Aslan may be on the move.
Heather
Sunday, August 21, 2011
Unreasonable....
Last week I had a doctor's appointment.
Without going into a long, drawn out history of our infertility struggles, suffice it to say that Brad and I have lost two babies to miscarriage and I just haven't gotten pregnant in a long time.
Last year, my doctor wanted me to try some medication aimed at improving my chances of becoming pregnant since Brad and I have always been, and still are, open to having babies the old fashioned way.
I tried the meds for a short time, didn't like the way the made me feel and stopped taking them. I had all intentions of calling my doctor and speaking with her about it. But I went to Africa and came home to discover our child had hearing loss and so began that journey....
So, fast forward and I'm sitting in the doctor's office again and she has something remarkable to say to me. Quite a different tune than she was singing last year, mind you. Nothing has changed. I'm just not taking the meds she wants me to take.
Last year she was all hopes and smiles about how effective this medicine could be for me. Told me I'd probably be pregnant in just a short time. Etc..etc....
Then last week, she looked me in the face and told me that given my difficulties getting pregnant in the past several years, it was UNREASONABLE for me to expect that I would ever get pregnant again, with or without medication.
Is that so Doc?
Hmmmm.
Tell me then...
When I took the test that showed I was pregnant with Samuel, I got down on my face in the floor of my bedroom and prayed that God would give me that baby. I heard my Father speak directly to my heart and say, "His name is Samuel." Turns out Samuel means "asked of God," and wouldn't you know it 9 months later I had a baby boy. I knew he was a boy the day I took that pregnancy test, because of what God spoke to me. Does any of that sound reasonable?
How about this one...
Several years later when I am pouring my heart out to God in my frustration and hurt over being unable to conceive like all my friends, some of whom were expecting twins, God spoke to me again through Psalm 20:4 which says, "May He give you the desire of your heart." He spoke directly to me again and told me that was a promise for me. Fast forward 3 years. I'm in Ethiopia and the day is April 20th, 2009. The faith journey of the adoption process is about to culminate in the meeting of our new son in just a few short hours. I'm reading the Bible, and since it's my habit to start with the Psalm that corresponds to the day's date, I open my Bible to Psalm 20.
There it is. My promise. And there I sat, half a world away, about to claim it.
Does that sound reasonable? How about the fact that someone gave us, no strings attached, the $20,000 that made that adoption possible? Does THAT sound reasonable?
Does it sound reasonable that we've been able to sell two homes in just a matter of days when God has said it was time to go? One was in the present market, with new homes under construction all around us in the same subdivision. Is any of that REASONABLE?
We began the process to bring Zach home in May without the money in the bank to do it. In 3 months time, half of it has come to us....again in the form of a large gift with no strings attached. Is any of THAT reasonable?
My God isn't reasonable. He is Almighty.
He doesn't deal in the reasonable. He deals in the miraculous.
He is able to do exceedingly, abundantly above all that I can ask or even imagine. (Ephesians 3:20)
I don't need your hope and smiles Doc. My hope isn't in you, and it certainly isn't in some little pill.
I've seen the unreasonable become reality. More than once. So, don't tell me that it's unreasonable for me to think I could ever get pregnant.
Go sell that somewhere else. I'm not buying.
Whether I'm ever pregnant again or not is dependent on one thing, and one thing only.
The will of my Father...not it's reasonableness.
And I'm content whatever turns out. I am a blessed woman with two, soon to be three, beautiful sons. Whether God gives me more through the blessings of birth or adoption is up to Him.
He is the one who builds families.
In His way and His time.
And you can hang reason.
"But Jesus looked at them and said to them, 'With men this is impossible, but with GOD ALL THINGS ARE POSSIBLE.'" (Matthew 19:26)
Heather
Wednesday, August 17, 2011
The Homeschooling Blues
If the fact that we are conservative christians who feel called to adopt special needs orphans from the uttermost parts of the earth doesn't quite make us weird enough, we also homeschool.
I know.
Really.
Who's surprised?
We really try hard to go out of our way to fulfill the stereotypical image of conservative, evangelical Jesus freaks.
But, hey. It's who we are.
Or rather Whose we are that makes us this way.
And we're unashamed.
And at least, I haven't traded my shorts in for a "skirts only" wardrobe and let my hair grow past my behind, though I love the Duggars and all they stand for.
No, I'm afraid I lean more toward the funky dyed hair, pierced nose, and (gasp) tasteful tattoo end of the spectrum. But I'm afraid to get my nose pierced or a tattoo because my mama disapproves. And I'm pretty sure she would spank me.
But this post isn't about tattoos, dyed hair or pierced noses. It's about homeschool.
I love it AND I hate it.
I love having my children around so that I can intentionally and thoughtfully instill in them our family's values throughout the day without having to try and squeeze it in on Sundays or between music lessons, dinner and football practice. I love reading real books by great authors like Treasure Island, Little House on the Prairie, Tom Sawyer and The Red Badge of Courage while my guys snuggle with me on the couch. I love seeing the light turn on in their eyes when they've learned something new and wonderful.
But I HATE the constant struggle to balance managing a home, nurturing relationships, caring for my special needs child, partnering with my husband in ministry, and washing the dadgum underwear. Nevermind having time to take care of myself. I hate that it almost takes an act of Congress for me to get out of the house to have a hair cut, go to the doctor, or have dinner with my best friend (another too busy pastor's wife and homeschooling mom). I have to coordinate the schedules of at least 5 people just to do that, sometimes more. I feel like a jack of all trades and master of none. I don't do anything well. Corners get cut everywhere in an attempt to get it all done. And my nerves can get very frayed. In those times, the "me" my family gets is no gift at all.
And I long to simplify.
Some parts of this life I chose. Other parts were chosen for me.
The last 7 homeschooling days have really stunk. We've had one good day. 1 out of 7 is 14%. Never in the past has it been this hard so early on.
And I've been struggling over how much to really expect from myself. Is it really reasonable for me to expect that I can juggle managing a home, raising children (some with special needs), being a pastor's wife, AND educating my kids? Each one of those is a full-time job on its own.
I ask myself if I continue to homeschool because, in some twisted way, I think it's what the truly spiritual and selfless do? Because I want to be in control?
I can tell you that I am fearful of public school and what it could do to my children. But I'm fearful of what my overwhelmed state of mind can do to us as well.
I'm fearful of the adjustment period when we bring another special needs child home. We've walked that road before and it was HARD. We're going in with eyes wide open this time, expecting the worst and hoping for the best. I don't want to start out in that challenge already frazzled and fatigued. For me, that's a recipe for depression. And depression is some ugly junk.
So, pray for me if you think about it. I love my God and I love my family. I want to do the very best job I can for my family for the glory of my Savior. My Savior and my family are the reasons I live. But sometimes the answers aren't black and white.
My Superwoman cape is feeling a little tattered.
Heather
I know.
Really.
Who's surprised?
We really try hard to go out of our way to fulfill the stereotypical image of conservative, evangelical Jesus freaks.
But, hey. It's who we are.
Or rather Whose we are that makes us this way.
And we're unashamed.
And at least, I haven't traded my shorts in for a "skirts only" wardrobe and let my hair grow past my behind, though I love the Duggars and all they stand for.
No, I'm afraid I lean more toward the funky dyed hair, pierced nose, and (gasp) tasteful tattoo end of the spectrum. But I'm afraid to get my nose pierced or a tattoo because my mama disapproves. And I'm pretty sure she would spank me.
But this post isn't about tattoos, dyed hair or pierced noses. It's about homeschool.
I love it AND I hate it.
I love having my children around so that I can intentionally and thoughtfully instill in them our family's values throughout the day without having to try and squeeze it in on Sundays or between music lessons, dinner and football practice. I love reading real books by great authors like Treasure Island, Little House on the Prairie, Tom Sawyer and The Red Badge of Courage while my guys snuggle with me on the couch. I love seeing the light turn on in their eyes when they've learned something new and wonderful.
But I HATE the constant struggle to balance managing a home, nurturing relationships, caring for my special needs child, partnering with my husband in ministry, and washing the dadgum underwear. Nevermind having time to take care of myself. I hate that it almost takes an act of Congress for me to get out of the house to have a hair cut, go to the doctor, or have dinner with my best friend (another too busy pastor's wife and homeschooling mom). I have to coordinate the schedules of at least 5 people just to do that, sometimes more. I feel like a jack of all trades and master of none. I don't do anything well. Corners get cut everywhere in an attempt to get it all done. And my nerves can get very frayed. In those times, the "me" my family gets is no gift at all.
And I long to simplify.
Some parts of this life I chose. Other parts were chosen for me.
The last 7 homeschooling days have really stunk. We've had one good day. 1 out of 7 is 14%. Never in the past has it been this hard so early on.
And I've been struggling over how much to really expect from myself. Is it really reasonable for me to expect that I can juggle managing a home, raising children (some with special needs), being a pastor's wife, AND educating my kids? Each one of those is a full-time job on its own.
I ask myself if I continue to homeschool because, in some twisted way, I think it's what the truly spiritual and selfless do? Because I want to be in control?
I can tell you that I am fearful of public school and what it could do to my children. But I'm fearful of what my overwhelmed state of mind can do to us as well.
I'm fearful of the adjustment period when we bring another special needs child home. We've walked that road before and it was HARD. We're going in with eyes wide open this time, expecting the worst and hoping for the best. I don't want to start out in that challenge already frazzled and fatigued. For me, that's a recipe for depression. And depression is some ugly junk.
So, pray for me if you think about it. I love my God and I love my family. I want to do the very best job I can for my family for the glory of my Savior. My Savior and my family are the reasons I live. But sometimes the answers aren't black and white.
My Superwoman cape is feeling a little tattered.
Heather
Tuesday, August 9, 2011
Frustration...
Today has been one frustrating day.
M had an appointment with the neurologist. Again. I really know our neurologist better than I wanted to. In fact, I never wanted to know a neurologist. Not as a patient anyway. Or the parent of a patient. But anyway.....<sigh>.
He's a nice guy, our neurologist. His mom worked with my dad. Both were teachers. He comes from good stock, I guess. Smart guy.
But he isn't God.
He doesn't have the answers we need or want about why M can't or won't sleep well.
We know M has seizures in his sleep. We've tried 3 anti-convulsants. Nothing works...not consistently anyway.
Now they want us to give him an anti-psychotic.
His mama can't do that. He's 3.
He isn't mentally ill. He isn't autistic. This particular drug has been approved for use in schizophrenics and autistic children older than our little guy. Not for sweet, energetic, happy 3 year olds that have seizures in their sleep and can't stay asleep.
I am just so frustrated that we travel all over to see all the professionals that the professionals tell us to see. We try the medicines. We get the equipment. We have the therapies. And they don't have any real answers. They can't tell us why M has seizures in his sleep. They can't tell us why he can't hear well. They can't tell us if he'll catch up or remain developmentally delayed. They can't tell us if he has an overarching neurological disorder. They can't tell us what to expect in the future. And, sometimes it feels like we're no further down the road than when we started all those months ago. No one really knows much of anything. The experts don't have the answers. They just want us to see more experts.
Next up has been the recommendation for genetic testing.
Geez Louise.
I wonder if his genes will show that our little guy was born, most likely prematurely, in the 3rd poorest country in the world to a malnourished mother who looked for work and had to abandon the baby she couldn't feed. I wonder if his genes will show that he spent the first year of his life in an orphanage with a rotation of nannies trying to care for too many babies. Or will the geneticists, after learning he was born in Ethiopia, ask me for the name of the hospital where he was born, as another professional (with a phD no less) did, and reveal their utter ignorance?
Will his genes show that in all his educational testing the one and only area that tested at or ahead of age level was his coping skills? The psychologist praised his coping abilities while this mother's heart broke at the realities of life that caused him to develop such extraordinary coping skills.
Will they show his great capacity to love, to forgive, to laugh, or his love for music and rhythm?
Or will they just give him a label?
Honestly I don't know what to think. In so many ways a label would be helpful. But it seems unfair to slap a label on my little guy and define him by it.
Ultimately, M is who his Creator made him to be. How do you label the creative mind of God?
Dare we label it and call it defect?
And still, I'm so frustrated with the lack of answers, the lack of real knowledge from the professionals and yes, the lack of sleep.
Today has been frustrating.
Here's hoping for a better tomorrow and the wisdom and spirit to move forward in the dark.
Heather
M had an appointment with the neurologist. Again. I really know our neurologist better than I wanted to. In fact, I never wanted to know a neurologist. Not as a patient anyway. Or the parent of a patient. But anyway.....<sigh>.
He's a nice guy, our neurologist. His mom worked with my dad. Both were teachers. He comes from good stock, I guess. Smart guy.
But he isn't God.
He doesn't have the answers we need or want about why M can't or won't sleep well.
We know M has seizures in his sleep. We've tried 3 anti-convulsants. Nothing works...not consistently anyway.
Now they want us to give him an anti-psychotic.
His mama can't do that. He's 3.
He isn't mentally ill. He isn't autistic. This particular drug has been approved for use in schizophrenics and autistic children older than our little guy. Not for sweet, energetic, happy 3 year olds that have seizures in their sleep and can't stay asleep.
I am just so frustrated that we travel all over to see all the professionals that the professionals tell us to see. We try the medicines. We get the equipment. We have the therapies. And they don't have any real answers. They can't tell us why M has seizures in his sleep. They can't tell us why he can't hear well. They can't tell us if he'll catch up or remain developmentally delayed. They can't tell us if he has an overarching neurological disorder. They can't tell us what to expect in the future. And, sometimes it feels like we're no further down the road than when we started all those months ago. No one really knows much of anything. The experts don't have the answers. They just want us to see more experts.
Next up has been the recommendation for genetic testing.
Geez Louise.
I wonder if his genes will show that our little guy was born, most likely prematurely, in the 3rd poorest country in the world to a malnourished mother who looked for work and had to abandon the baby she couldn't feed. I wonder if his genes will show that he spent the first year of his life in an orphanage with a rotation of nannies trying to care for too many babies. Or will the geneticists, after learning he was born in Ethiopia, ask me for the name of the hospital where he was born, as another professional (with a phD no less) did, and reveal their utter ignorance?
Will his genes show that in all his educational testing the one and only area that tested at or ahead of age level was his coping skills? The psychologist praised his coping abilities while this mother's heart broke at the realities of life that caused him to develop such extraordinary coping skills.
Will they show his great capacity to love, to forgive, to laugh, or his love for music and rhythm?
Or will they just give him a label?
Honestly I don't know what to think. In so many ways a label would be helpful. But it seems unfair to slap a label on my little guy and define him by it.
Ultimately, M is who his Creator made him to be. How do you label the creative mind of God?
Dare we label it and call it defect?
And still, I'm so frustrated with the lack of answers, the lack of real knowledge from the professionals and yes, the lack of sleep.
Today has been frustrating.
Here's hoping for a better tomorrow and the wisdom and spirit to move forward in the dark.
Heather
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