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.
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