I ran into an old friend yesterday. By "friend" I mean someone that I love dearly, whom I feel a deep and instant bond with. She and I have never gone shopping or sat down over a cup of coffee or even talked on the phone. But we've shared tears of sorrow and anguish. We've rejoiced together in little baby steps of healing. After years of not seeing one another, our hearts still understand.
Chris and I were hospital neighbors. In the long, painful days of devastating illness. Moise and her son, Jack, were next door to each other in the Pediatric ICU. At approximately the same age, our boys teetered in that place that seemed to be somewhere between life and death. Hour upon hour we sat carressing our boy's prone forms amongst the array of tubes, needles and machines. Beeping alarms and swooshing ventilators became our background music. We knew what every sound meant and learned to know our boys' health status by the blazing numbers blinking from the machines. Moise struggled for every breath of air. Jack struggled against cruel seizures that twisted and contracted his body. Both of them were in an exhausting pattern of one step forward and two steps back. We both had really bad days and not so bad days. We both cried oceans of tears, for our sons and for each other. We both were stripped, bare and raw, of everything but the sanctity of life.
Each of our rooms were surrounded by three walls. The front of both rooms was made up of a large sliding door of windows with a curtain that could be pulled for privacy. Nurses sat right outside our rooms, watching every beep, every breath. There was a horizontal window, approximately 4 ft by 2 ft, in the wall that separated Moise's ICU room from Jack's. By that window, we knew when things were good or bad and when there was a need for privacy. Most of all, through that window, we observed the unshakeable love, diligence and perseverance of motherhood.
Jack, like Moise, continues to struggle developmentally and medically. Although their challenges are dramatically different, life has not been fair to either of them.
When I saw my friend, my heart embraced her. I could see, in her eyes, the weariness and worry of years of caring for a fragile son. I asked if she and her husband ever have help with Jack. But I already knew the answer. He's not so little anymore and that makes finding help so much harder. I saw in her the fatigue, the love, the sadness, the joy, the strength, the loneliness. It's all there, etched into her soul. She didn't need to speak it. I saw it. I know it. I get it. In Anne of Green Gables fashion, she's like a bosom friend.
As we parted, my heart was grateful. Grateful that our paths crossed once again. Grateful to know her. Grateful for the strength that emanated from her.
Some of the most beautiful people that I know, I know because of the challenges of life.
God is good, all the time.
Wednesday, April 15, 2015
Tuesday, April 14, 2015
Hard Things
I've recently been talking to some of my grown children about hard things.
Grown Children? That feels weird to type and looks even weirder to read. I'm not quite sure that I'm even grown yet. How can my children be grown? But I had a birthday last week. I suppose that 45 means I've grown up somewhere along the way. And my kids? Well, 22 is definitely grown too. But they'll always be my babies, all seven of them. Regardless of how old their age says they are, regardless of whether or not they are here on this earth with me, they're my babies. I'm sticking to that.
I hate the thought of my babies ever having to do hard things. I wish that I could make all of their world's be sunshiney, happy, love.......forever. I wish that for a little moment, but then when I think about it, I don't really wish that at all.
Hard things make us better. I believe that with every ounce of my being. Hard things are... well....HARD. They turn our hearts inside out and make us weak and tired. They also make us strong and resilient and when our hearts are inside out, we can see what's going on in them a little bit more clearly. Hard things help us sift through the life stuff and show us what's really important and what's not. When we do hard things we learn that beautiful looks very different than we thought it did.
And God? Sometimes we can't see him when we're in the very deep mire of hard. But when we come out of it, when we are on the other side, we look back and we realize that he was sort of in our blindspot. Right there, close beside us, but the hard stuff was blocking our view of him. That doesn't mean he wasn't there. It only means we couldn't see him.
Grown Children? That feels weird to type and looks even weirder to read. I'm not quite sure that I'm even grown yet. How can my children be grown? But I had a birthday last week. I suppose that 45 means I've grown up somewhere along the way. And my kids? Well, 22 is definitely grown too. But they'll always be my babies, all seven of them. Regardless of how old their age says they are, regardless of whether or not they are here on this earth with me, they're my babies. I'm sticking to that.
I hate the thought of my babies ever having to do hard things. I wish that I could make all of their world's be sunshiney, happy, love.......forever. I wish that for a little moment, but then when I think about it, I don't really wish that at all.
Hard things make us better. I believe that with every ounce of my being. Hard things are... well....HARD. They turn our hearts inside out and make us weak and tired. They also make us strong and resilient and when our hearts are inside out, we can see what's going on in them a little bit more clearly. Hard things help us sift through the life stuff and show us what's really important and what's not. When we do hard things we learn that beautiful looks very different than we thought it did.
And God? Sometimes we can't see him when we're in the very deep mire of hard. But when we come out of it, when we are on the other side, we look back and we realize that he was sort of in our blindspot. Right there, close beside us, but the hard stuff was blocking our view of him. That doesn't mean he wasn't there. It only means we couldn't see him.
But if you suffer for doing good and you endure it,
this is commendable before God.
To this you were called, because Christ suffered for you,
leaving an example that you should follow in his steps.
1 Peter 2:20-21
Around Easter, I was listening to a radio minister. David Jeremiah or Chip Ingram maybe? I can't remember who, but after reading this verse from 1 Peter, they said, "we are called to suffer." I've
read this verse over and over and am committing it to memory.
"Called to suffer" for doing good, because that's what Christ did and we are to follow his example.
All those hard things that we have to go through: they're not just some cruel twist of fate. They're not trials that God hands out just because he feels like it. They are a vital part of our growing and becoming more like him.
Sometimes it looks very much like some people have alot more hard things than others. Maybe they do or maybe we just don't know about their hard things. It really doesn't matter. There is danger in comparing ourselves or our lives to others. We are not called to be like others, we are called to be like Christ. Christ had many, many hard things.
Are you in the midst of hard? If so, God's in it. He's in the hard things and He wants you to be like his Son.
Here's a quick photo peek at life lately
God is good, all the time.
Sometimes it looks very much like some people have alot more hard things than others. Maybe they do or maybe we just don't know about their hard things. It really doesn't matter. There is danger in comparing ourselves or our lives to others. We are not called to be like others, we are called to be like Christ. Christ had many, many hard things.
Are you in the midst of hard? If so, God's in it. He's in the hard things and He wants you to be like his Son.
Here's a quick photo peek at life lately
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| Jamee running the 1500m at the EIU Big Blue Track and Field Invite. She has three more meets left in her track career. |
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| Easter Morning with lots of sweetness |
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| Moise has known so very much hard lately. He teaches me every single day. |
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| 4 of my children, all grown up but still my babies. |
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| I desperately wish I could put add a new picture of Laynee Grace in her Easter dress. But I can't, so I'll leave you with a flower from her garden instead. A poor substitute for a picture of our little girl, but still beautiful and most importantly, the promise of life. |
God is good, all the time.
Thursday, April 2, 2015
We Chose Love
It's April and I don't know what happened to March.
March was hard.
Moise is struggling. He's angry at the injustice of life and I can't say that I blame him. He's grown so much. He's busting out of his clothes and shoes and AFOs (leg braces). Like everything else, he seems to have outgrown his medications, which wreaks havoc with his emotions and behaviors. Add in pubescent mood swings to all of the above and we have a very frustrated young man. The only way he knows how to respond is through angry, aggressive outbursts. While we understand and empathize deeply with his frustration, that understanding doesn't make such outbursts easier to deal with.
I feel a strong need to tread softly around this subject of Moise's emotions because, first and foremost, Moise deserves to have his dignity preserved. He has suffered monumental losses, losses that would make anyone angry. But, while most would use words to express themselves, we must remember that those words are locked away inside of him. Moise is not "bad." He simply doesn't have the means for socially acceptable expression.
I also tiptoe around the subject because of the fact that Moise is my son by way of adoption.
Yes!! You read that correctly. I feel a need to guard my words very carefully because Moise is adopted.
To some this will come as a shock, others will know exactly what I am talking about when I say that there are many who believe that since we chose to adopt, we chose hardship and that's nobody's fault but our own. Those people are of the "you-made-your-bed-now-lie-in-it" mentality. Those people will view anything I say about the struggles Moise faces as complaining. They will say, "if you're going to adopt kids like that then you'd better be able to deal with it." Their attitudes will convey that we should not have human emotions, that we should never feel weary or brokenhearted or lost because we "chose" this. If you think this way, then you know who you are, and I would ask that you quietly leave my blog. I write because I find healing through writing. I write because many parents of children with disablities draw courage and comfort from reading each other's blogs. I try hard to offer light, even when things seem dark.... hope, when things feel hopeless...to show that joy and sorrow can dwell together. But the truth is, I am human and sometimes it's hard to find the light, the hope, the joy.
It's true, we did make a choice. Three times in fact. We chose to love Moise and Jalayne and Kruz, until death do us part and long after that. We chose to adopt them and be their family, through the very good times and the really bad times. We knew when we made those choices that we were signing up for hard things, that life was not going to be easy, that we would make tremendous sacrifices. We knew that they wouldn't stay babies forever, that one day they would be teenagers and still disabled. We knew all this. And yes, we chose to adopt knowing all these things
We chose to love children with disabilities.
But we did not choose for children to have disabilities.
We chose to adopt Moise because we loved him, but we have never loved his disabilities. We did not choose cerebral palsy for him. We did not choose for him to be deaf. We fought, with everything in us, against blindness. Truth is, I hate cerebral palsy and the way it contracts my son's muscles. I despise the wheelchair and the cochlear implant. I would give everything I own to, just one time, hear my son's voice speak a word. I loathe all of the things that Moise endures but I love, so desperately, the little boy that suffers for them.
We certainly did not love Jacobsen Syndrome or Trisomy 9. We had never even heard of it. The rarity and lack of knowledge of Kruz's genetic anomaly was the very thing that made it difficult to find his forever family. We did not fall in love with his chromosomes, we fell in love with a precious little boy with black curls and dark eyes. Today, after two and a half years of loving Kruz, we still do not love Jacoobsen Syndrome. We never will. Never. The path ahead of Kruz is a stormy one, we have known that since before we even laid eyes on him. If we could have taken the child without the disabilities, we would have. But they came as an all in one deal. To say "no" to the disablity was to say "no" to the child.
While it is true that, somewhere along the path of Jalayne's life, we fell in love with the simplicity of Down Syndrome, we did not choose it for her. We loved Laynee, not because she had an extra 21st chromosome, but because for some reason that we cannot explain, God wrote her name upon our hearts.
No one chooses disablity for their child and those of us who adopt are not the exception. For those of you who say "you didn't have to adopt them." You are correct. You are absolutely correct. We didn't have to adopt them. We didn't have to love them. But "once our eyes are opened we cannot pretend we do not know what to do. God, who weighs our hearts and keeps our souls, knows we know and holds us responsible to act." Proverbs 24:12
We made a choice.
We chose to love our children.......no matter what.
God is good, all the time.
March was hard.
Moise is struggling. He's angry at the injustice of life and I can't say that I blame him. He's grown so much. He's busting out of his clothes and shoes and AFOs (leg braces). Like everything else, he seems to have outgrown his medications, which wreaks havoc with his emotions and behaviors. Add in pubescent mood swings to all of the above and we have a very frustrated young man. The only way he knows how to respond is through angry, aggressive outbursts. While we understand and empathize deeply with his frustration, that understanding doesn't make such outbursts easier to deal with.
I feel a strong need to tread softly around this subject of Moise's emotions because, first and foremost, Moise deserves to have his dignity preserved. He has suffered monumental losses, losses that would make anyone angry. But, while most would use words to express themselves, we must remember that those words are locked away inside of him. Moise is not "bad." He simply doesn't have the means for socially acceptable expression.
I also tiptoe around the subject because of the fact that Moise is my son by way of adoption.
Yes!! You read that correctly. I feel a need to guard my words very carefully because Moise is adopted.
To some this will come as a shock, others will know exactly what I am talking about when I say that there are many who believe that since we chose to adopt, we chose hardship and that's nobody's fault but our own. Those people are of the "you-made-your-bed-now-lie-in-it" mentality. Those people will view anything I say about the struggles Moise faces as complaining. They will say, "if you're going to adopt kids like that then you'd better be able to deal with it." Their attitudes will convey that we should not have human emotions, that we should never feel weary or brokenhearted or lost because we "chose" this. If you think this way, then you know who you are, and I would ask that you quietly leave my blog. I write because I find healing through writing. I write because many parents of children with disablities draw courage and comfort from reading each other's blogs. I try hard to offer light, even when things seem dark.... hope, when things feel hopeless...to show that joy and sorrow can dwell together. But the truth is, I am human and sometimes it's hard to find the light, the hope, the joy.
It's true, we did make a choice. Three times in fact. We chose to love Moise and Jalayne and Kruz, until death do us part and long after that. We chose to adopt them and be their family, through the very good times and the really bad times. We knew when we made those choices that we were signing up for hard things, that life was not going to be easy, that we would make tremendous sacrifices. We knew that they wouldn't stay babies forever, that one day they would be teenagers and still disabled. We knew all this. And yes, we chose to adopt knowing all these things
We chose to love children with disabilities.
But we did not choose for children to have disabilities.
We chose to adopt Moise because we loved him, but we have never loved his disabilities. We did not choose cerebral palsy for him. We did not choose for him to be deaf. We fought, with everything in us, against blindness. Truth is, I hate cerebral palsy and the way it contracts my son's muscles. I despise the wheelchair and the cochlear implant. I would give everything I own to, just one time, hear my son's voice speak a word. I loathe all of the things that Moise endures but I love, so desperately, the little boy that suffers for them.
We certainly did not love Jacobsen Syndrome or Trisomy 9. We had never even heard of it. The rarity and lack of knowledge of Kruz's genetic anomaly was the very thing that made it difficult to find his forever family. We did not fall in love with his chromosomes, we fell in love with a precious little boy with black curls and dark eyes. Today, after two and a half years of loving Kruz, we still do not love Jacoobsen Syndrome. We never will. Never. The path ahead of Kruz is a stormy one, we have known that since before we even laid eyes on him. If we could have taken the child without the disabilities, we would have. But they came as an all in one deal. To say "no" to the disablity was to say "no" to the child.
While it is true that, somewhere along the path of Jalayne's life, we fell in love with the simplicity of Down Syndrome, we did not choose it for her. We loved Laynee, not because she had an extra 21st chromosome, but because for some reason that we cannot explain, God wrote her name upon our hearts.
No one chooses disablity for their child and those of us who adopt are not the exception. For those of you who say "you didn't have to adopt them." You are correct. You are absolutely correct. We didn't have to adopt them. We didn't have to love them. But "once our eyes are opened we cannot pretend we do not know what to do. God, who weighs our hearts and keeps our souls, knows we know and holds us responsible to act." Proverbs 24:12
We made a choice.
We chose to love our children.......no matter what.
God is good, all the time.
Sunday, March 1, 2015
Farewell February
March is here and I welcome her with open arms. Spring, sunshine, warm air, outdoors-- my heart longs for all of it. My sanity demands it.
February was brutally cold. Sunshine was scarce and outdoors in negative wind chills wasn't a viable option. We battled illness all month, wicked sounding coughs and noses that ran like faucets. A trip to the doctor revealed a nasty case of bronchitis for Moise. I'm thankful for medicine, for steroids and antibiotics that kept him out of the hospital.
I had to stretch my imagination this month to come up with ways to occupy little boys during long days indoors.
We had a lot of table time, playing and learning.
We work relentlessly on Kruz's fine motor skills. It's a long, slow process but we're seeing subtle signs of growth and development. I'm learning a great deal of patience with this one.
This one loves his books. And I love that he loves them. We keep a stack of them in easy reach for him so he can get them whenever he wants.
I know that somewhere in that little mind of his, he's soaking up all that great information. One day he's going to show us all that even though his progress is slow, he's never stopped learning.
We did have a few days when the winds weren't quite so biting and the ice was great for skating. We took advantage of the fresh air when we could.
And this? This just melts this mama's heart. Moise and his wheelchair are helping Kruz learn to walk. He walks better behind the wheelchair than behind any of his push toys. We're anxiously waiting on a walker for him but in the meantime this works great.
As much as I hated to say good bye to them, I was ever so grateful to arrive home. Driving conditions were less than desirable with a fresh round of snow falling.
And today, on this first day of March, we woke up to this.
There's something magical about winter and snowfall. I won't complain about it but neither will I be sad to see it go. That's the beauty of seasons.
Happy March
God is good, all the time.
February was brutally cold. Sunshine was scarce and outdoors in negative wind chills wasn't a viable option. We battled illness all month, wicked sounding coughs and noses that ran like faucets. A trip to the doctor revealed a nasty case of bronchitis for Moise. I'm thankful for medicine, for steroids and antibiotics that kept him out of the hospital.
I had to stretch my imagination this month to come up with ways to occupy little boys during long days indoors.
We had a lot of table time, playing and learning.
Moise's new wheelchair tray makes helping out in the kitchen much easier. Everything can be at just the right level for him. He usually spends his afternoon hours in the kitchen with mom.
We work relentlessly on Kruz's fine motor skills. It's a long, slow process but we're seeing subtle signs of growth and development. I'm learning a great deal of patience with this one.
His walking is coming, slow but sure. Another lesson in patience.
This one loves his books. And I love that he loves them. We keep a stack of them in easy reach for him so he can get them whenever he wants.
I know that somewhere in that little mind of his, he's soaking up all that great information. One day he's going to show us all that even though his progress is slow, he's never stopped learning.
We did have a few days when the winds weren't quite so biting and the ice was great for skating. We took advantage of the fresh air when we could.
And this? This just melts this mama's heart. Moise and his wheelchair are helping Kruz learn to walk. He walks better behind the wheelchair than behind any of his push toys. We're anxiously waiting on a walker for him but in the meantime this works great.
Yesterday the boys and Danielle and I made a trip to Saint Louis to spend some time with the girls. It was a quick trip, too quick but I'm grateful for even a little bit of time with them.
As much as I hated to say good bye to them, I was ever so grateful to arrive home. Driving conditions were less than desirable with a fresh round of snow falling.
And today, on this first day of March, we woke up to this.
There's something magical about winter and snowfall. I won't complain about it but neither will I be sad to see it go. That's the beauty of seasons.
Happy March
God is good, all the time.
Saturday, February 28, 2015
Rare Disease Day
Today is "Rare Disease Day." I honestly didn't know there was such a day but it started showing up all over my facebook page so I thought I would use this as an oppurtunity to let everyone know about Kruz's genetic disorder.
We refer to Kruz's genetic condition as Jacobsen Syndrome, but in actuality it is a bit more complex than that.
Jacobsen Syndrome is a loss or deletion of part of the long arm of the 11th human chromosome. It occurs in only 1 in 50,000 births. The deletion causes quite an array of health and developmental problems, including heart defects, a bleeding disorder known as Paris Trousseau, gastrointestinal abnormalities, kidney defects, eating difficulties, intellectual disability, and immunodeficiency. With the exception of immunodeficiency, so far Kruz has nailed everyone of these.
People with JS are often short in stature and have skull and facial deformities. The facial deformities can include wide set eyes, droopy eyelids, broad nasal bridge, V-shaped lips, small lower jaw and small low set ears that rotate backwards. All of these perfectly describe Kruz. He is tiny, so tiny, weighing only 22 lbs at 2 years, 8 months. Kruz also has slightly deformed fingers, although I have never really seen documentation that this is typical of JS.
People often ask me what the life expectantcy is for JS. Honestly, sadly, since becoming aware of this disorder, I have known of many......too many.......little ones who have died. It seems that the ones that I have known to die have been very young (under 2 yrs) and often due to heart conditions. Otherwise, many live into adulthood.
That's Jacobsen Syndrome in a nut shell.
But wait!! Kruz is even more interesting. And more rare.
He also has an extra part or duplication on the short arm of his 9th chromosome, which is referred to as Partial Trisomy 9. To my knowledge, there are only two other recorded cases of children with a combination of JS and Trisomy 9 in the world. How's that for RARE!!! There may, of course, be others and we just aren't aware of them. One of the other children is in Austalia and the other is here in the US and ironically, is only a month younger than Kruz.
There is not a great deal of information about Trisomy 9 but what I have found is that it is not all that different from JS. Common T9 features include growth deficiency, intellectual disablitiy, heart defects, abnormal skull and facial structure: including sloping forehead, short eyelid folds, large nose, and malformed ears.
So what does all this mean? A whole lot and nothing at all. It means that as we journey through life with Kruz we know very little of what to expect. His genetic anomally is so rare that we have no idea what we can expect from him developmentally and intellectually. In his neurologists words, "he'll keep us guessing our whole life." We can travel with some degree of knowledge as we educate ourselves on these two disorders but we take each moment as it comes, knowing that Kruz's road is unique and not well traveled.
We can follow other kids with JS. We can follow other kids with T9.
Put the two together and what do you get?
KRUZ
Neither Jacobsen Syndrome nor Trisomy 9 define Kruz. They are not who he is.
Kruz is first and foremost a child. Our child. He's a beautiful little boy with a radiant smile and a gentle spirit. He learns new things every day. He brings joy, so very much joy to our home. He's a little boy who just happens to have special chromosomes. He's unique. He's special. Just like every other child that I have ever met.
God is good, all the time.
We refer to Kruz's genetic condition as Jacobsen Syndrome, but in actuality it is a bit more complex than that.
Jacobsen Syndrome is a loss or deletion of part of the long arm of the 11th human chromosome. It occurs in only 1 in 50,000 births. The deletion causes quite an array of health and developmental problems, including heart defects, a bleeding disorder known as Paris Trousseau, gastrointestinal abnormalities, kidney defects, eating difficulties, intellectual disability, and immunodeficiency. With the exception of immunodeficiency, so far Kruz has nailed everyone of these.
People with JS are often short in stature and have skull and facial deformities. The facial deformities can include wide set eyes, droopy eyelids, broad nasal bridge, V-shaped lips, small lower jaw and small low set ears that rotate backwards. All of these perfectly describe Kruz. He is tiny, so tiny, weighing only 22 lbs at 2 years, 8 months. Kruz also has slightly deformed fingers, although I have never really seen documentation that this is typical of JS.
People often ask me what the life expectantcy is for JS. Honestly, sadly, since becoming aware of this disorder, I have known of many......too many.......little ones who have died. It seems that the ones that I have known to die have been very young (under 2 yrs) and often due to heart conditions. Otherwise, many live into adulthood.
That's Jacobsen Syndrome in a nut shell.
But wait!! Kruz is even more interesting. And more rare.
He also has an extra part or duplication on the short arm of his 9th chromosome, which is referred to as Partial Trisomy 9. To my knowledge, there are only two other recorded cases of children with a combination of JS and Trisomy 9 in the world. How's that for RARE!!! There may, of course, be others and we just aren't aware of them. One of the other children is in Austalia and the other is here in the US and ironically, is only a month younger than Kruz.
There is not a great deal of information about Trisomy 9 but what I have found is that it is not all that different from JS. Common T9 features include growth deficiency, intellectual disablitiy, heart defects, abnormal skull and facial structure: including sloping forehead, short eyelid folds, large nose, and malformed ears.
So what does all this mean? A whole lot and nothing at all. It means that as we journey through life with Kruz we know very little of what to expect. His genetic anomally is so rare that we have no idea what we can expect from him developmentally and intellectually. In his neurologists words, "he'll keep us guessing our whole life." We can travel with some degree of knowledge as we educate ourselves on these two disorders but we take each moment as it comes, knowing that Kruz's road is unique and not well traveled.
We can follow other kids with JS. We can follow other kids with T9.
Put the two together and what do you get?
KRUZ
Neither Jacobsen Syndrome nor Trisomy 9 define Kruz. They are not who he is.
Kruz is first and foremost a child. Our child. He's a beautiful little boy with a radiant smile and a gentle spirit. He learns new things every day. He brings joy, so very much joy to our home. He's a little boy who just happens to have special chromosomes. He's unique. He's special. Just like every other child that I have ever met.
God is good, all the time.
Wednesday, February 18, 2015
Closure
All the world is full of suffering, it is also full of overcoming. --Helen Keller
Two weeks ago we met with Moise's eye doctor for his post op/talk about what comes next appointment.I had no idea what to expect from this appointment. I knew that we had taken a risk going sans eye patch after the cataract surgery on the right eye. I knew also that this appointment could very possibly send us on a journey of unknowns where the left eye was concerned. My stomach clenched tight at the very idea of corneal transplant.
Much to my relief, the right eye looked better than we even dared to hope. There was evidence of very minimal hemorrhage, but that was good considering there was no patch protecting it. Moise cooperated beautifully (cooperation is rare at the eye doctor) giving the doctor a very clear view of that right eye. While it is doubtful that there will be any vision gained from the surgery, we have confidence that there will be no further loss. Because we don't want to miss even the slightest bit of vision that he may have, next week we will meet with a team of doctors who will work together to determine what, if anything, he can see. From there, they will come up with a prescription that will give him the greatest level of vision enhancement. I'm excited about this. Moise has a way of defying all the laws of medicine and I am holding onto hope for that eye.
My heart skipped a few beats as the doctor leaned back and said "Now, let's talk about the left eye." He told me that the eye is so "hazy and cloudy and messy" that light cannot penetrate the lens. "Simply put," he said, "if I can't see in through the lens, Moise can't see out." In other words, the left eye is nothing more than darkness. This wasn't exactly a surprise. The only possible option for improvement would be a corneal transplant. Doctor consulted with several doctors, including a transplant specialist, and the consensus is that "Moise is not a good transplant candidate." He leaned close when he said "a corneal transplant is a long and very difficult process for a healthy 50 year old man who understands exactly what's going on. We just can't see how it would be possible for Moise."
I knew this. In my soul I knew that a transplant would not be a viable option for Moise. Still, it took a few moments for my brain to process what he was saying. Finally I asked, "So?? That's it?? It's done?? We do nothing more with that eye??"
"Correct," he said, "and if there is vision in the right eye, we make that work as much as it possibly can for him."
And you know what? It's okay. It's more than okay. It's closure. It's freedom to accept what is, to step away from all the turmoil that this eye has caused and move forward. For nearly two years we have fought for this eye and now it's done. It's over. We don't have to fight anymore.
The truth is.........Moise accepted it long ago. He has adapted to his vision loss. I am the one who has struggled and fought so hard against it. Because I thought it would limit him even more. Because it felt so incredibly unfair. Because I didn't want to have to adapt to the changes.
Here's the thing about Moise. He's resilient, far more so than I could ever be. He's brave. He's amazing. He's learning to communicate without vision. He's learning to read braille, in spite of the fact that we were told he probably didn't have the cognition to learn it. He already knows the letters A, B, C, T, H, F and M and short words containing these letters and he'll keep learning until he knows them all. I know it. Moise does not need vision to be the best that he can be.
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God is good, all the time.
Monday, February 16, 2015
Sorrow, Grace, Love
My friend Rachael said it best in a text to me. "What a hard, rough, DUMB week!!!" I had to laugh a little at the simplicity of her statement but it was ever so accurate. Last week was a dumb week, packed with emotion and heciticness and attitude and inadequacy.
The too familiar ebb and flow of grief-- we felt it in our own hearts and witnessed it in those we love so much--was nearly palpable There were rivers of tears. There were smiles too, smiles over cherished memories, smiles that didn't quite reach the eyes, smiles that didn't give way to laughter. Not yet. Someday, but not right now, not when grief is so very raw.
We shook our heads in disbelief as sorrow was compounded by more sorrow, loss upon loss, grief upon grief. We railed on God a bit and wondered at his plan which, right now, seems upside down and backward. We searched for words but found none. We longed to help but were helpless.
Still, somehow, somewhere, in the midst of all the sadness, there was beauty. We witnessed love in action. We gained an even deeper appreciation for our church family. We saw the brokenhearted held and comforted by arms that the human eye cannot see. We held tight to the hope that we have of heaven. We entertained mental images of our little girl being swung around in her uncle's arms. We saw grace poured out. We observed strength in the brokenness.
At week's end, we celebrated Valentine's Day, a day of love, with those we love most. The one's who know our imperfections, our weaknesses, our failures and love us anyway. Love felt even more precious with the fresh, aching awareness of how quickly life can end. We didn't celebrate with flashy or fancy. Just simple and quiet because we know that when all is said and done, when life ends, it's the simple that we cherish most.
Blessed are they that mourn, for they shall be comforted
God is good, all the time
The too familiar ebb and flow of grief-- we felt it in our own hearts and witnessed it in those we love so much--was nearly palpable There were rivers of tears. There were smiles too, smiles over cherished memories, smiles that didn't quite reach the eyes, smiles that didn't give way to laughter. Not yet. Someday, but not right now, not when grief is so very raw.
We shook our heads in disbelief as sorrow was compounded by more sorrow, loss upon loss, grief upon grief. We railed on God a bit and wondered at his plan which, right now, seems upside down and backward. We searched for words but found none. We longed to help but were helpless.
Still, somehow, somewhere, in the midst of all the sadness, there was beauty. We witnessed love in action. We gained an even deeper appreciation for our church family. We saw the brokenhearted held and comforted by arms that the human eye cannot see. We held tight to the hope that we have of heaven. We entertained mental images of our little girl being swung around in her uncle's arms. We saw grace poured out. We observed strength in the brokenness.
At week's end, we celebrated Valentine's Day, a day of love, with those we love most. The one's who know our imperfections, our weaknesses, our failures and love us anyway. Love felt even more precious with the fresh, aching awareness of how quickly life can end. We didn't celebrate with flashy or fancy. Just simple and quiet because we know that when all is said and done, when life ends, it's the simple that we cherish most.
Blessed are they that mourn, for they shall be comforted
Matthew 5:4
God is good, all the time
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