Bryan here. Several weeks ago, the doctor told us that based on statistics, there was a good chance that David would pass sometime between weeks 24 and 28. Tomorrow Heather hits week 28. We are very thankful that David did not die just before or on Christmas, which was something that we were concerned about. He continues to be very active, especially in the evening. His heartbeat continues to be surprisingly normal considering he only has half a heart. If modern technology was not available, we would not know anything was wrong. Contrary to what you might think, we are thankful that we know ahead of time. The foreknowledge makes us appreciate every second of his life. Nothing is taken for granted.
About 10 weeks ago, we were subtly encouraged to end the pregnancy by the doctors. If anyone out there is reading this and is going through a similar situation, please consider what I write. Yes, the emotional pain is unbearable at times, but the little "joys" of the baby's movements and clear responses to our voices make it worthwhile. Yes, this is the harder road to choose. But again the rewards are worth it. I think back to the moment that we got the Trisomy-13 diagnosis some 16 weeks ago at week 12. I recall looking up at the ultrasound and seeing David suck his thumb for the first time. That image has kept me going for 4 months now. Anyone who says that a fetus is not a human life is horribly wrong.
One last thought that struck me this evening while reading another blog is the thought that our souls are all built for eternity. The brevity of all our lives is difficult to grasp in light of that. Hope is a wonderful thing. Faith is even better.
I feel like Doogie Houser writing all this stuff.
Friday, December 30, 2011
Friday, December 16, 2011
David and the Nutcracker :-)
The kids and I attended the Nutcracker performance at the University today along with countless other schoolchildren. Apparently, the music was a wee bit too loud for David, who squirmed and did lots of backflips of his own during the two-hour performance.
(Jonathan thought the whole idea of men in tights was absurd and says once in a lifetime was enough. However, he did enjoy the scene when the "Russians" did acrobatics and back-flipped across stage several times--no girly tights there. They wore outfits that resembled black martial arts uniforms, passing muster with Jonathan.)
Anyway, the music must have been a little overstimulating for little David, for he stayed active the entire time. As soon as the ballet was over, we headed to lunch at Subway, followed by an afternoon of Christmas shopping. It felt like David slept the rest of the afternoon. :-) Poor baby, it was kind of loud. But in the process, we added another memory into our treasury of life with David.
(Jonathan thought the whole idea of men in tights was absurd and says once in a lifetime was enough. However, he did enjoy the scene when the "Russians" did acrobatics and back-flipped across stage several times--no girly tights there. They wore outfits that resembled black martial arts uniforms, passing muster with Jonathan.)
Anyway, the music must have been a little overstimulating for little David, for he stayed active the entire time. As soon as the ballet was over, we headed to lunch at Subway, followed by an afternoon of Christmas shopping. It felt like David slept the rest of the afternoon. :-) Poor baby, it was kind of loud. But in the process, we added another memory into our treasury of life with David.
Wednesday, December 14, 2011
God's provision in a tough moment
I have been scouring local stores for the perfect, soft, blue baby blanket to wrap David in when we have to give him back to God. It is the blanket he will be wrapped in when he is buried. I am also crocheting a blue baby blanket that I hope to finish in time to swaddle him in when he is born. When he is cleaned up after birth, I will dress him in his newborn outfit and cap, and wrap him in my handmade crocheted blanket for pictures. Both blankets are special; both have different purposes. The one I am making will stay in the family and one day be given to Jonathan as a special memory of his little brother. It is one of the few things that I can make for David that will be in the background of all his birth pictures and will stay in our family. It gives me joy to knit each stitch.
Picking out the burial blanket is something I have been doing since Mom came in early November. None of the one I had seen up until Monday were perfect enough. But on Monday night, I finally found the right one (oddly enough, at Walmart--where I had never looked); I found David's blanket. It has a blue satin trim. The inside of the blanket is soft, fleece. On the fleece is embroidered, "Thank Heaven for little boys." I texted a photo of it to Bryan. We both agreed it was the right one.
No one passed through the baby aisle I was on while I was deliberating. For that I was thankful. It was a quiet moment in which I prayed for God to give me strength. My next thought was, how am I going to get through the checkout line without a cashier asking me about the blanket, in light of my baby belly? God, please give me strength to do this. Tthe thought came that maybe it was best to go through the self-checkout line, that way I wouldn't have to talk to anyone about our situation.
As I pushed my cart up to the self-checkout area, I heard someone in the next line call my name. I looked up and saw my friend Jennifer. She asked how I was doing. With tears in my eyes, I told her I had just picked out the blanket I would wrap David in when we have to give him back to God. She immediately came over and gave me a big hug. It was the answer to my prayers from back on the baby aisle. God knew how hard this moment had been and he sent Jennifer to literally stand with me as I purchased the sacred blanket. Another hug. It was like having my own personal guardian angel standing with me, giving me strength in a weak moment. We have had increasing happy moments lately (as Bryan described in his blog posting recently), but this was not one of them.
Jennifer is so sweet. She has offered to take baby belly photos of me, but until that night at Walmart our schedules just didn't jive. We were able to set a definite time for her to come out to our house and take some photos. She just spent the entire afternoon with me today doing just that. It was so special. Friends and family really have been the hands and feet of God, ministering comfort in so many ways...photos, meals, flowers sent for weeks on end, cards, prayers, special jewelry. Words are simply not enough to express the gratitude Bryan and I feel in our hearts for each act of love on ours and David's behalf. Thank you.
Speaking of David, we were able to listen to his heartbeat again yesterday and have a 4-D video and ultrasound photos taken of him yesterday. In one of them he is smiling. He looks so much like Jonathan did in his newborn photos. Same cute little nose, forehead, and long Platt fingers. He weighs 1 pound, 9 ounces at 25 weeks, 3 days. We are so blessed to have spent Thanksgiving with him, sing songs to him, talk to him, and decorate our Christmas tree with him, safely tucked inside my tummy. And still, about 75% of the time, he immediately responds to the sound of Jonathan's voice (and strangely no one else's voice). It is a gift he gives his big brother. His presence and life is a daily gift to us. Seeing his sweet little face was the icing on the cake this week.
Picking out the burial blanket is something I have been doing since Mom came in early November. None of the one I had seen up until Monday were perfect enough. But on Monday night, I finally found the right one (oddly enough, at Walmart--where I had never looked); I found David's blanket. It has a blue satin trim. The inside of the blanket is soft, fleece. On the fleece is embroidered, "Thank Heaven for little boys." I texted a photo of it to Bryan. We both agreed it was the right one.
No one passed through the baby aisle I was on while I was deliberating. For that I was thankful. It was a quiet moment in which I prayed for God to give me strength. My next thought was, how am I going to get through the checkout line without a cashier asking me about the blanket, in light of my baby belly? God, please give me strength to do this. Tthe thought came that maybe it was best to go through the self-checkout line, that way I wouldn't have to talk to anyone about our situation.
As I pushed my cart up to the self-checkout area, I heard someone in the next line call my name. I looked up and saw my friend Jennifer. She asked how I was doing. With tears in my eyes, I told her I had just picked out the blanket I would wrap David in when we have to give him back to God. She immediately came over and gave me a big hug. It was the answer to my prayers from back on the baby aisle. God knew how hard this moment had been and he sent Jennifer to literally stand with me as I purchased the sacred blanket. Another hug. It was like having my own personal guardian angel standing with me, giving me strength in a weak moment. We have had increasing happy moments lately (as Bryan described in his blog posting recently), but this was not one of them.
Jennifer is so sweet. She has offered to take baby belly photos of me, but until that night at Walmart our schedules just didn't jive. We were able to set a definite time for her to come out to our house and take some photos. She just spent the entire afternoon with me today doing just that. It was so special. Friends and family really have been the hands and feet of God, ministering comfort in so many ways...photos, meals, flowers sent for weeks on end, cards, prayers, special jewelry. Words are simply not enough to express the gratitude Bryan and I feel in our hearts for each act of love on ours and David's behalf. Thank you.
Speaking of David, we were able to listen to his heartbeat again yesterday and have a 4-D video and ultrasound photos taken of him yesterday. In one of them he is smiling. He looks so much like Jonathan did in his newborn photos. Same cute little nose, forehead, and long Platt fingers. He weighs 1 pound, 9 ounces at 25 weeks, 3 days. We are so blessed to have spent Thanksgiving with him, sing songs to him, talk to him, and decorate our Christmas tree with him, safely tucked inside my tummy. And still, about 75% of the time, he immediately responds to the sound of Jonathan's voice (and strangely no one else's voice). It is a gift he gives his big brother. His presence and life is a daily gift to us. Seeing his sweet little face was the icing on the cake this week.
Friday, December 9, 2011
There are good days too
Bryan here. In reading through this blog, I have realized that it appears that all days are bad days. That is not the case. There are some good days mixed in too. Sure there are more than enough down and really down days, but there are quite a few good days too. I've noticed that I have tended to only write something on this blog when it's been a down day. The fair-good days provide us with a chance to recover from the bad ones.
The prayers, thoughts and support from all of you have been a difference maker for us, and we are very thankful to you.
All things considered, the kids are handling this fairly well. We have been open with them about most of what we know about David's condition and his expected passing. We have been careful not to overload them with more than they can handle though. I think Rebecca feels the pain from this most deeply, given her background. With that said, she has done a remarkable job in processing and communicating her feelings. Jonathan understands more deeply what is going on. However, I think that he is internalizing it some. His feelings occasionally come out in spurts, but it isn't frequent. Being the gifted thinker that he is, maybe he is processing it all that way. I hope that the grief and disappointment are not being bottled up. That's never good.
How am I doing? I actually don't know. I don't think I am suppressing any grief or anger right now. I'm not embracing it either. I feel emotionally lethargic and resigned to the fate that awaits. Is that a bad thing? I don't know. Like Jonathan, the grief hits me in spurts. A good example of this was when we had to go speak with the funeral director and to pick out David's plot last week. That was a bad day. I think that the approach of Christmas and the upcoming visit by my parents is doing me a great deal of good. My role right now is to be the support for Heather and a steadying presence for the kids. I guess that God designed me this way for this purpose. As has been the case, I will deal with the grief as it comes, knowing that the full force of it will come when he dies.
The prayers, thoughts and support from all of you have been a difference maker for us, and we are very thankful to you.
All things considered, the kids are handling this fairly well. We have been open with them about most of what we know about David's condition and his expected passing. We have been careful not to overload them with more than they can handle though. I think Rebecca feels the pain from this most deeply, given her background. With that said, she has done a remarkable job in processing and communicating her feelings. Jonathan understands more deeply what is going on. However, I think that he is internalizing it some. His feelings occasionally come out in spurts, but it isn't frequent. Being the gifted thinker that he is, maybe he is processing it all that way. I hope that the grief and disappointment are not being bottled up. That's never good.
How am I doing? I actually don't know. I don't think I am suppressing any grief or anger right now. I'm not embracing it either. I feel emotionally lethargic and resigned to the fate that awaits. Is that a bad thing? I don't know. Like Jonathan, the grief hits me in spurts. A good example of this was when we had to go speak with the funeral director and to pick out David's plot last week. That was a bad day. I think that the approach of Christmas and the upcoming visit by my parents is doing me a great deal of good. My role right now is to be the support for Heather and a steadying presence for the kids. I guess that God designed me this way for this purpose. As has been the case, I will deal with the grief as it comes, knowing that the full force of it will come when he dies.
Sunday, December 4, 2011
the missing ornament
This afternoon, we put up the Christmas tree and its white lights. Bryan and the kids lined up all the ornaments neatly on the coffee table so everyone could find his or her special ornaments to hang. But one ornament was missing...there was no ornament for baby David.
I'm not one to run out and be spontaneous and do shopping on a Sunday afternoon. Sunday afternoons are usually spent with family, taking an afternoon nap, or reading a good book; but this afternoon I was compelled to stop everything and go purchase a special ornament for David before a single ornament was hung. My sweet husband obliged, and like crazy people we piled in the car on our lazy Sunday afternoon on a sacred mission to find "David's ornament."
I wondered if I'd see anyone I knew at the mall. I did. A sweet friend from the homeschool co-op saw us looking through some of the ornaments that were on sale at a kiosk. She even asked the kids if we were looking for a special ornament. Somehow, I managed to reply without falling apart. You see, as I looked through the countless ornaments for sale at the mall, the truth that this will be David's only Christmas with us hit me like a ton of bricks. While we still have him with us, I want him to be a part of all our family is doing each day. Having his own ornament while he is still here became my afternoon's mission.
None of us is guaranteed a tomorrow. I wonder how we would live each day differently if we truly thought it might be one of our last. A good thought to ponder for each of us.
We did find a very special ornament. It is a white ceramic cross, bordered in baby blue. In the center of the cross is a white heart, also bordered in baby blue. It was the first ornament on the tree. It is surrounded by precious ornaments made by my other two children when they were preschoolers. The tree is now complete.
I'm not one to run out and be spontaneous and do shopping on a Sunday afternoon. Sunday afternoons are usually spent with family, taking an afternoon nap, or reading a good book; but this afternoon I was compelled to stop everything and go purchase a special ornament for David before a single ornament was hung. My sweet husband obliged, and like crazy people we piled in the car on our lazy Sunday afternoon on a sacred mission to find "David's ornament."
I wondered if I'd see anyone I knew at the mall. I did. A sweet friend from the homeschool co-op saw us looking through some of the ornaments that were on sale at a kiosk. She even asked the kids if we were looking for a special ornament. Somehow, I managed to reply without falling apart. You see, as I looked through the countless ornaments for sale at the mall, the truth that this will be David's only Christmas with us hit me like a ton of bricks. While we still have him with us, I want him to be a part of all our family is doing each day. Having his own ornament while he is still here became my afternoon's mission.
None of us is guaranteed a tomorrow. I wonder how we would live each day differently if we truly thought it might be one of our last. A good thought to ponder for each of us.
We did find a very special ornament. It is a white ceramic cross, bordered in baby blue. In the center of the cross is a white heart, also bordered in baby blue. It was the first ornament on the tree. It is surrounded by precious ornaments made by my other two children when they were preschoolers. The tree is now complete.
Wednesday, November 30, 2011
reaching out
After returning home yesterday from going to the cemetery and funeral home, I collapsed on the bed and grief and sorrow overtook me. On one level, I am so weary of the tears, of the grief. But no matter how hard I try to stop the unceasing tears, my new companions, sorrow and grief, will not let me rest until I acknowledge them--wrestle with them.
In the midst of such a moment of unending sadness, David surprised me. He reached up with his little hand and pressed up near the top of my stomach. It was not the familiar sharp jab of an elbow or foot. Nor was it the shifting and turning I sometimes feel. It was the feathery feel of little fingers. He was reaching out, reaching up with his little hand, almost as if to say, "I'm here, mommy." Tears of sadness became tears of joy. No doctor's prognosis, no trip to a cemetery can take away the joy of that moment. And no one in the world but me was privileged to share in that moment with my son.
Yes, in the spring, my arms and the bassinette that I bought will be empty. There will be no baby to proudly introduce like my friends do after 9 long months. But my heart will be full of tender, precious moments with my son--memories that fill me with joy--and no one can take that away.
In the midst of such a moment of unending sadness, David surprised me. He reached up with his little hand and pressed up near the top of my stomach. It was not the familiar sharp jab of an elbow or foot. Nor was it the shifting and turning I sometimes feel. It was the feathery feel of little fingers. He was reaching out, reaching up with his little hand, almost as if to say, "I'm here, mommy." Tears of sadness became tears of joy. No doctor's prognosis, no trip to a cemetery can take away the joy of that moment. And no one in the world but me was privileged to share in that moment with my son.
Yes, in the spring, my arms and the bassinette that I bought will be empty. There will be no baby to proudly introduce like my friends do after 9 long months. But my heart will be full of tender, precious moments with my son--memories that fill me with joy--and no one can take that away.
Something mildly comical
Bryan again. Yesterday was a rough day. The hardest part for me was to go to the spot in the cemetary where David's body will be buried. The grief was compounded seeing all of the other baby grave sites. Upon looking at them, we noticed the grave of a young child that we knew several years ago that had suddenly died. Another sad moment was filling out the paperwork with the funeral director and having to write David's name down. We discussed the logistical information, and Heather later pre-registered at the hospital. The day passed, and it ended right on schedule. We don't have to live that day again. Yeah! Now that this is all out of the way, we can sit back and try to enjoy the remainder of the pregnacy and our time with David.
Now to the mildly amusing satire. While we were waiting in the funeral director's office our attention was drawn to several items that were on dispay for clients to consider for purchase. One of which happened to be a sequence of grave markers that showed how some people decide to have a caricature of their face put on the headstone. In short, the person (spouse or family member) who is arranging the funeral submits a photo to the person creating the headstone. A lithograph is created. This is used to cut the image of the person's face into the stone. My focus was drawn to the young model who was used to create the example. My mind, being as warped as it is, briefly shifted from my grief to the following thought process. I thought of her being introduced to a stranger at some kind of gathering. Over the course of conversation, the stranger asks her what she does for a living. She replies, "Why, I model headstones for a living." Now, where does the conversation go from there? Where can it go?
Now to the mildly amusing satire. While we were waiting in the funeral director's office our attention was drawn to several items that were on dispay for clients to consider for purchase. One of which happened to be a sequence of grave markers that showed how some people decide to have a caricature of their face put on the headstone. In short, the person (spouse or family member) who is arranging the funeral submits a photo to the person creating the headstone. A lithograph is created. This is used to cut the image of the person's face into the stone. My focus was drawn to the young model who was used to create the example. My mind, being as warped as it is, briefly shifted from my grief to the following thought process. I thought of her being introduced to a stranger at some kind of gathering. Over the course of conversation, the stranger asks her what she does for a living. She replies, "Why, I model headstones for a living." Now, where does the conversation go from there? Where can it go?
Tuesday, November 29, 2011
Tough day
Bryan here. Today is probably going to be one of the harder days. We have to go to the cemetery to pick out a plot and to look at the infant caskets. This is a horrible contrast to what we should be doing at this point which should be picking out a crib and other baby items.
I haven't written in the past couple of weeks because there hasn't been much to say or any developments to note. David (our baby) continues to get more active and is actually doing quite well at the moment, but I am fully aware this won't last more than a couple of months longer.
For those who have not been through something like this it is the emotional equivalent of being buried alive. Each day, a new shovel full of dirt is thrown on top of you. It becomes harder to breath, harder to move. Today we get two more shovel fulls thrown on us. If there's a limit to this, we haven't found it yet.
Our two children continue to be the bright light for us in this.
I continue to struggle to find an acceptable reason why this is allowed to happen not only to our baby but other innocent, blameless babies out there. The Bible states that "The wages of sin is death," meaning both physical death (this) and spiritual death (eternal separation from God-unless a person becomes a Christian). Our baby will never have the unfortunate opportunity to make a choice to commit a sin-and is therefore without sin.Why should he have to die then? Yes, we all carry the "sin gene", and he does too, but again he will have never sinned and therefore should not have to pay the consequence. This is the riddle that I cannot solve.
So today is one of those days where we have to place on foot in front of the other. The good thing about days is that there are only 24 hours in them. They have to end, just like every trial has to eventually end.
I haven't written in the past couple of weeks because there hasn't been much to say or any developments to note. David (our baby) continues to get more active and is actually doing quite well at the moment, but I am fully aware this won't last more than a couple of months longer.
For those who have not been through something like this it is the emotional equivalent of being buried alive. Each day, a new shovel full of dirt is thrown on top of you. It becomes harder to breath, harder to move. Today we get two more shovel fulls thrown on us. If there's a limit to this, we haven't found it yet.
Our two children continue to be the bright light for us in this.
I continue to struggle to find an acceptable reason why this is allowed to happen not only to our baby but other innocent, blameless babies out there. The Bible states that "The wages of sin is death," meaning both physical death (this) and spiritual death (eternal separation from God-unless a person becomes a Christian). Our baby will never have the unfortunate opportunity to make a choice to commit a sin-and is therefore without sin.Why should he have to die then? Yes, we all carry the "sin gene", and he does too, but again he will have never sinned and therefore should not have to pay the consequence. This is the riddle that I cannot solve.
So today is one of those days where we have to place on foot in front of the other. The good thing about days is that there are only 24 hours in them. They have to end, just like every trial has to eventually end.
Wednesday, November 16, 2011
borrowing from Steven Curtis Chapman...
“I Will Trust You” by Steven Curtis Chapman
I don't even wanna breathe right now
All I wanna do is close my eyes
But I don't wanna open them again
Until I'm standing on the other side
I don't even wanna be right now
I don't even wanna be right now
I don't wanna think another thought
And I don't wanna feel this pain I feel
And right now, pain is all I've got
It feels like it's all I've got, but I know it's not
It feels like it's all I've got, but I know it's not
No, I know You're all I've got
And I will trust You,
I'll trust You
Trust You,
God, I will
Even when I don't understand, even then I will say again
You are my God, and I will trust You
God, I'm longing for the day to come
God, I'm longing for the day to come
When this cloudy glass I'm looking through
Is shattered in a million pieces
And finally I can just see You
God, You know I believe it's true
God, You know I believe it's true
I know I will see You
But until the day I do
I will trust You, trust You,
I will trust You, trust You,
Trust You, God,
I will
Even when I don't understand
Even then I will say again
You are my God, and I'll trust You
You are my God, and I'll trust You
And with every breath I take
And for every day that breaks
I will trust You
I will trust You
And when nothing is making sense
Even then I will say again
God, I trust You
God, I trust You
I will trust You
I know Your heart is good
I know Your love is strong
And I know Your plans for me
Are much better than my own
So I will trust You, trust You
I trust You,
God, I do
Even when I can't see the end
And I will trust You
I will trust You, I will
Even when I don't understand
Even then I will say again
I will trust You,
I will trust You,
I will trust You,
I will
I know Your heart is good,
Your love is strong,
Your plans for me are better than my own
Yeah,
Your heart is good
Your love is strong
Your plans for me are better than my own
And I trust You
You are my God
And I will trust You
Copied from MetroLyrics.com
Monday, November 14, 2011
150
Bryan and I got to hear David's heartbeat this afternoon. 150 beats per minute...just like it should be for a baby at 21 weeks. So bittersweet...some days there are simply no words...
Friday, November 11, 2011
Wednesday, November 9, 2011
spiritual ears
In Sunday School, we're going through a study called One Minute After Your Die by Irwin Lutzer. We are looking at what the Bible says about death for believers as well as unbelievers. Interestingly, on Sunday, as Pastor Jeff read Scriptures from the Bible that point to the hope Christians have for new, perfect bodies in heaven, David kept leaping and squirming inside me. Normally, his most active time of day is in the late afternoon and evening. He has never been quite so active during the morning. It brought tears to my eyes to think that he was filled with such energy and was physically responding to such good news.
Did his physical ears understand what he was hearing? I doubt it. Did something in his soul leap as God's Word was read--words that describe the hope he has for a new body with no heart problems, no more death, and a home where one day we will all be together...I have to believe so. :-)
Did his physical ears understand what he was hearing? I doubt it. Did something in his soul leap as God's Word was read--words that describe the hope he has for a new body with no heart problems, no more death, and a home where one day we will all be together...I have to believe so. :-)
Friday, November 4, 2011
Lamentations
Lamentations 3:1-32
I am the man who has seen affliction by the rod of his wrath.
He has driven me away and made me walk in darkness rather than light;
Indeed, he has turned his hand against me again and again, all day long.
He has made my skin and my flesh grow old and has broken my bones.
He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead.
He has walled me in so I cannot escape; he has weighed me down with chains.
Even when I call out or cry for help, he shuts out my prayer.
He has barred my way with blocks of stone; he has made my paths crooked.
Like a bear lying in wait, like a lion in hiding, he dragged me from the path and mangled me and left me without help.
He drew his bow and made me the target for his arrows.
He pierced my heart with arrows from his quiver.
I became the laughingstock of all my people; they mock me in song all day long.
He has filled me with bitter herbs and sated me with gall.
He has broken my teeth with gravel; he has trampled me in the dust.
I have been deprived of peace; I have forgotten what prosperity is.
So I say, "My splendor is gone and all that I had hoped from the LORD."
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.
Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, "The LORD is my portion; therefore I will wait for him."
The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD.
It is good for a man to bear the yoke while he is young.
Let him sit alone in silence, for the LORD has laid it on him.
Let him bury his face in the dust--there may yet be hope.
Let him offer his cheek to one who would strike him, and let him be filled with disgrace.
For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love.
For he does not willingly bring affliction or grief to the children of men.
He has driven me away and made me walk in darkness rather than light;
Indeed, he has turned his hand against me again and again, all day long.
He has made my skin and my flesh grow old and has broken my bones.
He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead.
He has walled me in so I cannot escape; he has weighed me down with chains.
Even when I call out or cry for help, he shuts out my prayer.
He has barred my way with blocks of stone; he has made my paths crooked.
Like a bear lying in wait, like a lion in hiding, he dragged me from the path and mangled me and left me without help.
He drew his bow and made me the target for his arrows.
He pierced my heart with arrows from his quiver.
I became the laughingstock of all my people; they mock me in song all day long.
He has filled me with bitter herbs and sated me with gall.
He has broken my teeth with gravel; he has trampled me in the dust.
I have been deprived of peace; I have forgotten what prosperity is.
So I say, "My splendor is gone and all that I had hoped from the LORD."
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.
Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, "The LORD is my portion; therefore I will wait for him."
The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD.
It is good for a man to bear the yoke while he is young.
Let him sit alone in silence, for the LORD has laid it on him.
Let him bury his face in the dust--there may yet be hope.
Let him offer his cheek to one who would strike him, and let him be filled with disgrace.
For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love.
For he does not willingly bring affliction or grief to the children of men.
Officially Trisomy-13
Bryan here again. The gray clouds seem fitting today. As you can see below in Heather's posting we just received the official diagnosis that this is the worst case scenario: Trisomy-13. The results came in a phone call from the doctor who had just received word of the test results. Though we have known this was to be our lot in our hearts for several weeks now, the certainty of our baby's pending death make it difficult-especially when he kicks. The challenge in the coming weeks and months will be to view each movement as a blessing/gift, not as the reminder that one of them will be his last. While I don't know if that will be possible, I do know and retain the hope that he will not suffer much as he is born into heaven-should he die before or during childbirth. If we are blessed to hear a few cries from him at birth before he passes, then that's a blessing too. Who knows, maybe he will get to take a look or two at us before seeing Jesus face-to-face.
For anyone who has gone through this or is going through this (or something similar), the book Heaven is for Real has been a tremendous encouragement for us in this process. Google it. It will change your outlook on life (and after-life ;-)). I have only read/heard parts of it so far, but Heather has told me about some of the more interesting parts. This book is a must read.
So, here's the big question. How does someone get through something as awful as this? Here's how I am dealing with it. The one-day at a time approach doesn't cut it. On days like this, it is one step at the time. When that is too much, it is one breath at a time. It is important to keep the daily routine going. Complacency is never a good thing-especially now. Get out of the house. Don't suppress the grief. Don't wallow in it either. Deal with it as it comes. Don't feel guilty when you have a good day or week.Hold onto and lean on those you love. Humbly accept the help and solace of friends and family-even when you don't feel like it.
Our church family, family and friends have been so good to us. It brings tears to my eyes. They make us keenly aware that we are not alone in this trial. They are going through it with us.I remember that; for those of you in this (or a similar) situation remember that. It sure is nice not to be alone in this!!! In writing this, I realize that not everyone who reads this may have these same relationships available, but there is a greater source of help: God.
The brutally honest question to ask in this is why would I turn to the one who caused this to happen for comfort? That is a very good question. The only way that I can explain it is that he's still God, he's still the creator of everything, I still belong to him, and he is my (heavenly) father. Nearly all fathers deeply care about their children. So my sadness is his sadness. He shares in my pain. I don't know why he chose to let this happen to us, but I still need to accept it.This is not to say that there are not very frank discussions going on between him and me about this from time to time. But the neat thing is that he nearly always replies. Unfortunately, it is more often something that doesn't set too well with me-but it is always the truth. I still find it mind boggling to know that I can have this relationship with the creator of everything and that he has cares for me individually. His vastness doesn't make me feel small and insignificant, rather it makes me feel comforted-like a warm blanket. As I remark in the wonder of all this, my focus shifts from this bleak trial to God. My spirit lifts. This must be how the persecuted Christians in other countries find joy and contentment in spite of their circumstances.
For anyone who has gone through this or is going through this (or something similar), the book Heaven is for Real has been a tremendous encouragement for us in this process. Google it. It will change your outlook on life (and after-life ;-)). I have only read/heard parts of it so far, but Heather has told me about some of the more interesting parts. This book is a must read.
So, here's the big question. How does someone get through something as awful as this? Here's how I am dealing with it. The one-day at a time approach doesn't cut it. On days like this, it is one step at the time. When that is too much, it is one breath at a time. It is important to keep the daily routine going. Complacency is never a good thing-especially now. Get out of the house. Don't suppress the grief. Don't wallow in it either. Deal with it as it comes. Don't feel guilty when you have a good day or week.Hold onto and lean on those you love. Humbly accept the help and solace of friends and family-even when you don't feel like it.
Our church family, family and friends have been so good to us. It brings tears to my eyes. They make us keenly aware that we are not alone in this trial. They are going through it with us.I remember that; for those of you in this (or a similar) situation remember that. It sure is nice not to be alone in this!!! In writing this, I realize that not everyone who reads this may have these same relationships available, but there is a greater source of help: God.
The brutally honest question to ask in this is why would I turn to the one who caused this to happen for comfort? That is a very good question. The only way that I can explain it is that he's still God, he's still the creator of everything, I still belong to him, and he is my (heavenly) father. Nearly all fathers deeply care about their children. So my sadness is his sadness. He shares in my pain. I don't know why he chose to let this happen to us, but I still need to accept it.This is not to say that there are not very frank discussions going on between him and me about this from time to time. But the neat thing is that he nearly always replies. Unfortunately, it is more often something that doesn't set too well with me-but it is always the truth. I still find it mind boggling to know that I can have this relationship with the creator of everything and that he has cares for me individually. His vastness doesn't make me feel small and insignificant, rather it makes me feel comforted-like a warm blanket. As I remark in the wonder of all this, my focus shifts from this bleak trial to God. My spirit lifts. This must be how the persecuted Christians in other countries find joy and contentment in spite of their circumstances.
the phone call
Our perinatologist called today and confirmed what we've all suspected all along...Trisomy 13. David's terminal diagnosis. The finality of it all and the tears that followed were the book ends to a day that has felt heavy and sadder than most. Strange that the doctor would call today. Then again, maybe not.
Ironically, we're all terminal, you know. David's life will be lived out in a short time. My prayer is that he would somehow know he's loved--first by God, then by us. It is hard to accept that he will not live a full life with us. Maybe he is the lucky one. He will escape all the pain of this world. I pray something good and beautiful will come from his life. What are the rest of us doing with the gift of life given to each of us, for whatever time we have? Something to ponder...
Ironically, we're all terminal, you know. David's life will be lived out in a short time. My prayer is that he would somehow know he's loved--first by God, then by us. It is hard to accept that he will not live a full life with us. Maybe he is the lucky one. He will escape all the pain of this world. I pray something good and beautiful will come from his life. What are the rest of us doing with the gift of life given to each of us, for whatever time we have? Something to ponder...
Thursday, November 3, 2011
9 days ago
Last Tuesday (9 days ago), we went back to the perinatologist--the dreaded dark room where all of our continuous bad news is delivered. We prayed long and hard before going in and simply asked God for no more bad news. For the first time in a long time, God answered our prayers. Surprisingly, there was no additional bad news. In fact, all of David's important organs and systems look fine (except, of course for his heart--which still beats strong and steadily with only 2 chambers). His brain looks fine, his measurements are normal, his internal organs look fine, and he has more than doubled in size since early October and is now 9 ounces. He has none of the other problems that they might expect to detect in a baby that appears to have Trisomy 13. I guess we honestly expected to have additional bad news that would be final supporting evidence for Trisomy 13. So even though nothing has changed, no more problems have emerged. This made the doctor conclude that we definitely needed to have the amniocentesis to confirm the suspected diagnosis of Trisomy 13.
I had tried to avoid having an amniocentesis due to the risks of loss and infection, the scary long needle, and simply because of the pressure my OB had been putting on me to have it. I hate being pressured into anything. But the high risk doctor was not pressuring me; he said that it would be beneficial to know with certainty the prognosis prior to childbirth simply because if David had no chromosomal abnormalities and "simply" had a heart defect independent of Trisomy 13, then I would need to give birth in Seattle by C-section. In Seattle, they would be able to do immediate intervention and care for a tiny heart patient like my baby. However, if the amnio confirms Trisomy 13 as we all suspect, I will give birth to David in Missoula and treasure the minutes and hours we have with him, whether he is stillborn or born fighting for life.
So we wait...probably sometime early next week we'll get the results. In my heart, I am not holding out hope; the signs all point to Trisomy 13. But at least we will know with certainty and can close the door on the "what ifs." Instead of counting days, I am joyfully counting the kicks I can't stop writing about. They are my son's way of letting me know he is still fighting...somehow still living on a tiny two-chambered heart that is miraculously beating.
I had tried to avoid having an amniocentesis due to the risks of loss and infection, the scary long needle, and simply because of the pressure my OB had been putting on me to have it. I hate being pressured into anything. But the high risk doctor was not pressuring me; he said that it would be beneficial to know with certainty the prognosis prior to childbirth simply because if David had no chromosomal abnormalities and "simply" had a heart defect independent of Trisomy 13, then I would need to give birth in Seattle by C-section. In Seattle, they would be able to do immediate intervention and care for a tiny heart patient like my baby. However, if the amnio confirms Trisomy 13 as we all suspect, I will give birth to David in Missoula and treasure the minutes and hours we have with him, whether he is stillborn or born fighting for life.
So we wait...probably sometime early next week we'll get the results. In my heart, I am not holding out hope; the signs all point to Trisomy 13. But at least we will know with certainty and can close the door on the "what ifs." Instead of counting days, I am joyfully counting the kicks I can't stop writing about. They are my son's way of letting me know he is still fighting...somehow still living on a tiny two-chambered heart that is miraculously beating.
my grateful thought from the eye of the storm...
I just had a moment of gratitude, strangely, after reading a plethora of blogs written by parents who are suffering on their own journeys: parents of Trisomy 13 and 18 babies; babies lost for unknown reasons early through miscarriage; babies lost through stillbirth; babies born severely disabled; grieving mothers who simply long to carry a baby in their womb beyond the first trimester.
I have said many times lately that hoping for one more baby but never having one is better than what we are going through now. But I think I am changing my mind on that. I am truly grateful to be carrying David Samuel Henry, a very active little boy. I can't imagine if I had never felt him move. I look forward to the afternoons and evenings when he is most active. I feel so blessed to have actually made it through the first trimester and still be carrying him, of being pregnant with him.
I've been down the dark road of early miscarriage; sometimes that experience, although extremely devastating, felt more merciful--made more sense. I reasoned that if something was wrong, God knew it and was being merciful to us and the baby. Even knowing we won't be able to keep David on this earth, somehow I am still in awe that he is still with me right now. If I had lost him early in pregnancy, I would have never known that I had a son. Or his mid-morning stretches or afternoon kicks. I can't wait to be with in Heaven, where there will be no fear of saying goodbye.
I have said many times lately that hoping for one more baby but never having one is better than what we are going through now. But I think I am changing my mind on that. I am truly grateful to be carrying David Samuel Henry, a very active little boy. I can't imagine if I had never felt him move. I look forward to the afternoons and evenings when he is most active. I feel so blessed to have actually made it through the first trimester and still be carrying him, of being pregnant with him.
I've been down the dark road of early miscarriage; sometimes that experience, although extremely devastating, felt more merciful--made more sense. I reasoned that if something was wrong, God knew it and was being merciful to us and the baby. Even knowing we won't be able to keep David on this earth, somehow I am still in awe that he is still with me right now. If I had lost him early in pregnancy, I would have never known that I had a son. Or his mid-morning stretches or afternoon kicks. I can't wait to be with in Heaven, where there will be no fear of saying goodbye.
Thursday, October 27, 2011
two juxtaposed thoughts...
I'll start with my more reflective thought and end with one that makes me smile, so as to end on a happy note. If you are reading this now, bear with me as I pour out my struggling, rambling thoughts, which are a living testimony to a life that will pass too quickly and whom I grieve losing even as he bursts forth with life in the womb.
I am concluding that at any given point in time there are two kinds of people in the world. (I realize there are many ways of looking at the world and people, but today I'll focus on this.) There are those who have lived through unspeakable loss and tragedy and are still standing; and those who have only seen life unfold as they dreamed, untouched as yet by sorrow and loss. To suddenly go from the latter group to the former is like skipping blissfully along on a sunny path through a beautiful garden, and suddenly mashing through the glass of an unseen wall, with a million little shards wounding you. You look about at the beauty beyond the broken glass lying at your feet but cannot grasp it; the beauty is out of reach. If you take a step to move out of the brokenness, you only wound your feet on the path more.
You eventually are able to escape the garden of brokenness and move on, because life doesn't stop. You observe pictures of others, family portraits of others in their beautiful gardens, watching more joy and flowers and beautiful children filling their frames, always being added...my frame doesn't reflect all those who should be in my portrait, in my garden. Why God, do you keep taking my babies?
Ever since last Friday, but especially all day long today, I experienced a beautiful gift that cannot be taken from my memory and is forever etched there like a framed photo. David has been kicking me in the upper right side of my tummy, near my ribs. One by one, Jonathan, Rebecca, and then Bryan were able to feel his tiny feet pushing against me. He is here now; he is my gift now; every day he is with me, now kicking me, is a new gift I feel privileged to unwrap each day. I long to kiss his little feet...
So, my beautiful gift, waving back at me with perfectly formed little hands from my ultrasound photo, each segment of each finger so tiny, I marvel at your life. I love you. Please stay one more day. I celebrate your kicks, your life. You are leaving footprints on my heart that will forever remain. You have brought me great, wonderous joy today.
I am concluding that at any given point in time there are two kinds of people in the world. (I realize there are many ways of looking at the world and people, but today I'll focus on this.) There are those who have lived through unspeakable loss and tragedy and are still standing; and those who have only seen life unfold as they dreamed, untouched as yet by sorrow and loss. To suddenly go from the latter group to the former is like skipping blissfully along on a sunny path through a beautiful garden, and suddenly mashing through the glass of an unseen wall, with a million little shards wounding you. You look about at the beauty beyond the broken glass lying at your feet but cannot grasp it; the beauty is out of reach. If you take a step to move out of the brokenness, you only wound your feet on the path more.
You eventually are able to escape the garden of brokenness and move on, because life doesn't stop. You observe pictures of others, family portraits of others in their beautiful gardens, watching more joy and flowers and beautiful children filling their frames, always being added...my frame doesn't reflect all those who should be in my portrait, in my garden. Why God, do you keep taking my babies?
Ever since last Friday, but especially all day long today, I experienced a beautiful gift that cannot be taken from my memory and is forever etched there like a framed photo. David has been kicking me in the upper right side of my tummy, near my ribs. One by one, Jonathan, Rebecca, and then Bryan were able to feel his tiny feet pushing against me. He is here now; he is my gift now; every day he is with me, now kicking me, is a new gift I feel privileged to unwrap each day. I long to kiss his little feet...
So, my beautiful gift, waving back at me with perfectly formed little hands from my ultrasound photo, each segment of each finger so tiny, I marvel at your life. I love you. Please stay one more day. I celebrate your kicks, your life. You are leaving footprints on my heart that will forever remain. You have brought me great, wonderous joy today.
Friday, October 21, 2011
Redefining My Relationship With God...
I am reposting the following blog posting by a mom, Lisa Husmann, whose baby boy Jaxton was also diagnosed with Trisomy 13 and knew her baby would not live. Her blog is http://lisahusmann.wordpress.com. Her words reflect my own struggles, and yet she is just a little further down the road on her journey. I identify with so much of what she says. I decided put this out there as a challenge to anyone who might be struggling to re-define his or her relationship with God as I am currently. Lisa has some honest and wise words to share. You don't have to have a baby with Trisomy 13 to be challenged by what she shares...
"Since Jaxton passed away I have had to re-define my relationship with God. I’ll be the first to admit that I have had an easy life. I’ve always been loved, provided for and protected. God and I have always had a pretty good relationship because it has always been going my way or benefiting me in some way. Subsequently it was easy to love him.
When we got the prognosis that Jaxton would die I spent then next few months grieving, I cried, I hurt as deeply as you could imagine. Then I remembered my favored relationship I had with God and then I thought this isn’t really going to happen to me. Somehow it’s wrong or God will heal him and it will all work out fine (just like it always has). I was looking back at all the times God had loved, provided and protected me in the past and thought this was going to be another time like that. Somehow he really wasn’t going to die. We kept waiting for each prenatal or ultrasound appointment to bring good news, but it never came. We always left sadder and more distraught then when we got there, but still thinking the God I KNOW isn’t going to do this TO ME.
When Jaxton was born he never took his first breath and had to immediately be intubated. What felt like just minutes after I finally saw him in the NICU I was being asked questions about what I wanted to do as far as “comfort care”? Josh and I had no plans to just let our little boy slip away with out a fight. So we chose a “heroic care” type plan. But still I was confidently thinking, “God is going to come through. It will all work out fine. He’s gonna live!”
We did start getting positive news about...him breathing on his own, I proudly thought, “God, I knew you would come through for me!”
Even as his heart stopped beating I acknowledged his power and ability to do miracles and gave him all the glory and said “You can still do this! You can save him!”
But now Jaxton is gone.
The God I knew before… the one who Loved me, Provided for me and Protected me has forced me to re-examine and redefine my relationship with him.
In doing so I realized something about myself that not only applied to God but other relationships: If I personally didn’t benefit from a situation was I still going to do it? Was I in love with God only because of the perks I was getting? Was I going to continue to give him my whole heart like I so often claimed I had done if I personally wasn’t getting something from it? If more bad things keep happening, then will I jump ship?
This is a hard pill to swallow when you realize something like this about yourself. What are my motives on a daily basis? Unfortunately, usually they are selfish motives. What does it mean to deny yourself daily and pick up your cross? To me it means that I need to be sold out on God and expanding his Kingdom here on earth and for eternity whether it benefits me or not (but especially if it doesn’t).
I started to read a book my friend Cami gave me called Holding On To Hope. She writes about the book of Job. I realized I could relate to Job on a very small scale. I could relate to feeling privileged by God and having a beneficial type relationship. Job had many things going for him and God provided for him is so many ways. Yet God allows Satan to take away all his children and livestock and servants. Then Job says something wise… (I’ll paraphrase) “Should we only accept good things from the Lord and not the bad?”
So in regards to Jaxton… I’m still devastated, hurt, very sad and a different person than I was before he entered my life. I promised the Lord that I would wholly surrender to him… and that meant to give Jaxton over to him as well. But I couldn’t give him over with a hard heart--it had to be genuine. Although my heart wasn’t 100% genuine (as if any mother’s heart would be) I had an understanding that Jaxton’s purpose on earth was fulfilled and I was at peace with that.
Today I buried my son. It was the last time I was ever going to see his little white casket. I still could not believe he was not with us any more. That he was here and now he’s gone. This made it all so final.
The God I knew before… the one who Loved me, Provided for me and Protected me… is still the same God. It’s just different now. It’s a different love. A deeper love. A comforting love. // It’s a different way of providing. Providing friends and family to watch Jake. Providing support. Providing physically and emotionally. Providing a beautiful baby for me to love for 14 days. Providing peace that he is in heaven. // A different Protection. Protecting my heart. Protecting my relationships. Protecting my wholeness. It’s all just so different.
I could go on and on about how God provided for us during this time, But I’ll leave it short and just say HE DID! and still does even today. That’s why this next part is so hard to admit to.
YES, I have a strong faith in God. I have grown to love him and all I’d be lying if I said everything was back to normal. My heart has been a bit hardened when it comes to praying, but especially for healing: Unfortunately, I am in a stage where I tend to roll my eyes when someone asks for a prayer for healing. Hoping they get a good outcome but wondering “Why bother to pray for it, God’s gonna do what ever he wants anyway.” It saddens me that I feel this way, but my wounds are fresh from being vulnerable and getting hurt. I put my whole heart into believing God could and would heal Jaxton. It might take time to trust in the powers that God has and not be hurt or jealous when I hear of a baby who is healed. I’m being honest and I know it’s hard to hear. It’s hard to say. It’s hard to admit. It’s embarrassing. I’m on a new journey trying to understand the God I very much LOVE and TRUST. I look forward to what I learn about him and for him to show me a new side of his love for me.
I am still getting used to this new relationship. The comfortable and cocky relationship I was used to for 29 years is gone. Thinking “everything will work out” and “it will be fine” is long gone… Maybe that’s good though. Comfort leads to complacency and what good is just being comfortable? World changers aren’t complacent they are uncomfortable. I am excited to see what the Lord has in store for me in the future! :) So once again I will quote Job, “Should we only accept good things from the Lord and not the bad?” I have already seen the way I have changed as a person, the way the world has changed because of my son. It was bad for me and my family to lose him but good for the world that he was here. I look forward to seeing him again and that makes me smile. I am thankful for God letting us know that it won’t end at just the 14 days but I’ll get to spend eternity with Jaxton and Jesus!!! What a wonderful thought!"
Thursday, October 20, 2011
The Fog
Just a mile and a half from our home are the Bitterroot Mountains. As autumn covers the earth, the rich evergreens are mixed with the yellowing Tamarack trees, forming a puzzle-like pattern on the mountains. On clear mornings as I sip my morning tea at my kitchen table, I enjoy watching low-lying clouds lift into the deep blue sky just above the mountains.
Not so today. When I awoke, I could see that the entire valley was immersed in thick fog. Visibility was no further than 300 yards. It was a heavy, gray fog...as heavy as my heart when I think of death separating me from my precious baby in the near future. As I sat at my computer this morning, looking out the window, I thought about how I know with certainty that the mountains are just beyond the fog. I felt hemmed in, edgy, longing for the fog to lift and let in sunshine and a clear view of the mountains on the other side.
What a picture of life and faith. I know that once David leaves this life, he will be just beyond the veil of fog that separates us from heaven and eternity. Death is that foggy veil. I'm thankful that Jesus triumphed over death on the cross, and that one day, the fog will be gone forever...
Not so today. When I awoke, I could see that the entire valley was immersed in thick fog. Visibility was no further than 300 yards. It was a heavy, gray fog...as heavy as my heart when I think of death separating me from my precious baby in the near future. As I sat at my computer this morning, looking out the window, I thought about how I know with certainty that the mountains are just beyond the fog. I felt hemmed in, edgy, longing for the fog to lift and let in sunshine and a clear view of the mountains on the other side.
What a picture of life and faith. I know that once David leaves this life, he will be just beyond the veil of fog that separates us from heaven and eternity. Death is that foggy veil. I'm thankful that Jesus triumphed over death on the cross, and that one day, the fog will be gone forever...
Wednesday, October 19, 2011
A fondness for family
Bryan here. I think that we have transitioned from begin in a state of sheer horror at what is happening to a state of profound sadness. The unending grief that binds these two emotions has become tinged with hope and an appreciation for what we do have. As we continue to experience the death of our child "in slow motion", we become increasingly aware of the value of life. With each passing day, the baby's kicks become a little more noticeable as Heather's belly grows. While we are keenly aware that one day in the not too distant future the kicks will stop, we do experience joy that couples the sadness. We think about the reality of eternity that awaits us all. The brevity of our lives on Earth does not measure up to even be a "blink" in our overall existence. God has promised to make our baby perfect. In 1 Corinthians 13, the love chapter, it states "when perfection comes the imperfect disappears". Since absolutely nobody is perfect here on Earth, then this is a reference for those taken to heaven following death. That sounds pretty darn good to me! The moment David dies, whether in Heather's womb, during child birth or just after, he will awake in heaven with a perfect body, mind and soul. This "hope" that we possess sure lessens the sting of this situation.
As can be imagined, it has brought our family even closer together. The little day-to-day irritants really don't matter anymore and actually seem silly. Our relationship (Heather and I) has become much tighter. The relationship with the kids has deepened considerably as well. They are truly a joy and a source of strength.
I don't know why God allowed for this to happen to us, or to anyone for that matter. I'm sure that I never will completely know. Sometimes, there are no answers-or any answers that we can comprehend. Yes this angers me at times, but I am just a man. I think of my pet dog/wolf. When I leave for work in the morning, he has no idea why I am leaving or what I am doing. He does not have the mental capabilities to understand such simple things. So it is with me. What do I know. My job is to follow, obey and to trust God. His track record isn't too bad, you know. As long as there is chocolate in Heaven, I will be ok! :-)
As can be imagined, it has brought our family even closer together. The little day-to-day irritants really don't matter anymore and actually seem silly. Our relationship (Heather and I) has become much tighter. The relationship with the kids has deepened considerably as well. They are truly a joy and a source of strength.
I don't know why God allowed for this to happen to us, or to anyone for that matter. I'm sure that I never will completely know. Sometimes, there are no answers-or any answers that we can comprehend. Yes this angers me at times, but I am just a man. I think of my pet dog/wolf. When I leave for work in the morning, he has no idea why I am leaving or what I am doing. He does not have the mental capabilities to understand such simple things. So it is with me. What do I know. My job is to follow, obey and to trust God. His track record isn't too bad, you know. As long as there is chocolate in Heaven, I will be ok! :-)
Tuesday, October 18, 2011
our baby
We are naming our baby David Samuel. David--because his big brother Jonathan always wanted a brother named David. In Heaven, we hope they will experience a heavenly version of the kind of bond that King David and his closest friend Jonathan shared on earth. His middle name is Samuel because we know the Lord will be taking him Home either during pregnancy or just after birth. Therefore we are giving him to the Lord, knowing he will serve our King, just as the prophet Samuel ministered in the temple after his mother Hannah dedicated him to the Lord.
David has a constellation of symptoms consistent with Trisomy 13, the most notable of which is a 2-chambered heart. Babies with Trisomy 13 rarely make it to their first birthday, and most die sometime during the last trimester of pregnancy. With David's severe heart condition, we know what we are facing. Each day with him is a gift. I will have the privilege of carrying him until--in the blink of an eye--he will be taken home to Heaven. We are heartbroken that we will never know him in this life the way we know our other children. I have wept buckets of tears over all the unlived moments we will never share with him. I pray that the moment he passes into the arms of Jesus he will also be embraced and held by my Granna until I one day go home as well. Maybe she can keep singing him the lullabies where Rebecca and I left off...
David has a constellation of symptoms consistent with Trisomy 13, the most notable of which is a 2-chambered heart. Babies with Trisomy 13 rarely make it to their first birthday, and most die sometime during the last trimester of pregnancy. With David's severe heart condition, we know what we are facing. Each day with him is a gift. I will have the privilege of carrying him until--in the blink of an eye--he will be taken home to Heaven. We are heartbroken that we will never know him in this life the way we know our other children. I have wept buckets of tears over all the unlived moments we will never share with him. I pray that the moment he passes into the arms of Jesus he will also be embraced and held by my Granna until I one day go home as well. Maybe she can keep singing him the lullabies where Rebecca and I left off...
Singing Jesus Loves Me and others sacred things
Tonight at bedtime, Rebecca and I sang "Jesus Loves Me" to David. I huddled over my belly in the dark as best I could, while Rebecca put her face next to my protruding stomach as we sang. Actually, the sweetest part of all was when Rebecca changed the words as we sang to: "Yes, Jesus loves David; yes, Jesus loves David; yes, Jesus loves David; the Bible tells me so." Leave it to Rebecca to think of something so sweet as that.
I must have sung that song a thousand times or more to Rebecca and Jonathan. Between now and when the Lord takes our precious son to heaven, I plan on singing every song and lullaby I can think of to the baby I will birth but can't keep...with the help of the daughter I wasn't privileged to birth or sing lullabies to until she was a year old. The irony is staggering. To think that of my three children, I've only had the privilege of being a Mommy to one of my children from birth to the age of one. (We adopted Rebecca at 11 1/2 months and have been blessed to have her since then.) Sigh. I have no words...only gratitude for each day during pregnancy that we have with David. A lifetime of love to squeeze into only months...if not for the promise of Heaven--with our David--we would have only despair. Hold your babies tight and cover them with kisses for the gift of today.
I must have sung that song a thousand times or more to Rebecca and Jonathan. Between now and when the Lord takes our precious son to heaven, I plan on singing every song and lullaby I can think of to the baby I will birth but can't keep...with the help of the daughter I wasn't privileged to birth or sing lullabies to until she was a year old. The irony is staggering. To think that of my three children, I've only had the privilege of being a Mommy to one of my children from birth to the age of one. (We adopted Rebecca at 11 1/2 months and have been blessed to have her since then.) Sigh. I have no words...only gratitude for each day during pregnancy that we have with David. A lifetime of love to squeeze into only months...if not for the promise of Heaven--with our David--we would have only despair. Hold your babies tight and cover them with kisses for the gift of today.
Tuesday, October 11, 2011
One month ago tomorrow...
One month ago tomorrow, we received news that no parent ever wants to hear. Something was wrong with our baby. The baby I had always longed for and ever gave up on having. Only 3 days before, we had celebrated that I had made it past the first trimester uneventfully. Only three days later our hope and joy quickly crumbled. The ultrasound tech immediately detected a very high measurement of fluid at the back of the baby's neck in a test called a Nuchal Translucency (NT) scan. All babies have some fluid, but many babies with Down Syndrome or other chromosomal abnormalities have an increased amount. Statistically, it is much more likely to have a baby with Down Syndrome if you have an abnormal result.
Just days before, in preparation for what they would be looking at on ultrasound, I had researched images on the Internet. I knew what a healthy baby looked like. I also memorized the dark gap of fluid in ultrasound photos of babies who had problems. It was surreal. Seeing your unborn child pop up on the large screen on the wall is breathtaking. Seeing the dark gap of fluid come into view behind MY baby's neck left me speechless. This can't be right. I'm not a professional. Surely I'm not seeing things right. Stay calm. I always rush to a worst-case scenario. Breathe. The ultrasound tech leans forward and gets a little less chatty. I gulp. She presses the wand harder and harder into my belly, trying to get better views of the baby. After more and more of this, she takes some notes and says, "I'll be back in just a minute."
"Something's not right," I told Bryan. After nearly 10 agonizing minutes of the tension building, the tech returned and sat down.
"Is everything all right?" I barely mustered enough strength to ask.
"Well, there are a few things that are concerning," she went on to say. She noted that the NT measurement was 8 mm. Anything beyond 2.5 mm puts the baby at increased risk of possibly having one of the chromosomal abnormalities mentioned above. Eight mm is a huge red flag. So huge, they didn't even both doing the blood test that is normally taken in conjunction with the ultrasound. The tech told us the doctor was in a satellite office and wanted to meet with us the following day to go over the results with us personally. Gulp.
They left us in the room for as long as we needed. We collapsed into each other's arms and wept.
The next day, as the doctor spelled out in more detail the bad news from the previous day, in the middle of it all came a beautiful moment. All the while as the doctor talked, our baby kept squirming around on the screen. Suddenly, our baby started sucking his little thumb. That was our golden moment in a very dark pit. I am holding onto the little things now...
Just days before, in preparation for what they would be looking at on ultrasound, I had researched images on the Internet. I knew what a healthy baby looked like. I also memorized the dark gap of fluid in ultrasound photos of babies who had problems. It was surreal. Seeing your unborn child pop up on the large screen on the wall is breathtaking. Seeing the dark gap of fluid come into view behind MY baby's neck left me speechless. This can't be right. I'm not a professional. Surely I'm not seeing things right. Stay calm. I always rush to a worst-case scenario. Breathe. The ultrasound tech leans forward and gets a little less chatty. I gulp. She presses the wand harder and harder into my belly, trying to get better views of the baby. After more and more of this, she takes some notes and says, "I'll be back in just a minute."
"Something's not right," I told Bryan. After nearly 10 agonizing minutes of the tension building, the tech returned and sat down.
"Is everything all right?" I barely mustered enough strength to ask.
"Well, there are a few things that are concerning," she went on to say. She noted that the NT measurement was 8 mm. Anything beyond 2.5 mm puts the baby at increased risk of possibly having one of the chromosomal abnormalities mentioned above. Eight mm is a huge red flag. So huge, they didn't even both doing the blood test that is normally taken in conjunction with the ultrasound. The tech told us the doctor was in a satellite office and wanted to meet with us the following day to go over the results with us personally. Gulp.
They left us in the room for as long as we needed. We collapsed into each other's arms and wept.
The next day, as the doctor spelled out in more detail the bad news from the previous day, in the middle of it all came a beautiful moment. All the while as the doctor talked, our baby kept squirming around on the screen. Suddenly, our baby started sucking his little thumb. That was our golden moment in a very dark pit. I am holding onto the little things now...
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