When God sends a 6-8 inch snow storm the day before you are officially finished with "sternal precautions" you take that as a sign that you are supposed to end them a day early. =) We have one happy girl!
One happy girl - click for video clip =)
Our follow up visit with the cardiologist is on Thursday. We are curious to see how we proceed from here. When I stopped to think about, I realized that since we brought Jadelyn home two years ago, we have been monitoring a heart issue, now we are monitoring a repaired heart condition. We know that it will be a life long monitoring and that at some point, she will likely need some type of intervention (i.e. repair the artificial heart valves that break down over time). We have hope that this will be less invasive then the surgery she just went through. We are so proud of our girl! She is so brave and strong. We are also so thankful for God's mercy and healing touch on her. More on her upcoming appointment later, right now it's time for a happy dance. <3
Tuesday, March 14, 2017
Thursday, February 9, 2017
Reflections....
Now we see in a mirror, dimly, then we shall see face to face. Now I know in part, then I shall know FULLY, even as I am fully known. 1 Corinthians 13:12. This just seemed to be a good place to start when talking about reflections. What do we see in a mirror? Only what we put in front of it that is adequately illuminated to be seen. Each day I think God has illuminated a little bit more of the reflection to be able to see and understand what it is that He has done in Jadelyn's life, and in my own.
We are in awe of the miracle of healing that He has brought about in Jadelyn's life. Her ability to fight and recover and bounce back to "normal" has left us humbled and exhausted =). How can this little person seem to have no pain? How are we going to keep her "quiet" for another 5 weeks? We understand that bone healing takes time. When you break an arm or leg they put a cast on it to protect and restrict the bone while it is healing. You can't (or at least don't want to) put a chest cast on a three year old, so the only protection her sternum gets is what she gives it. We are constantly on guard to make sure she isn't crawling around the floor, running with Jeremiah, or wresting with Joel.
We went to Jadelyn's first post-op recheck this morning. She is healing very well. The EKG and echo were very normal with little evidence that she had surgery only 8 days ago. She will continue to be on some medication for another week, but our next recheck is scheduled for a month from now. We anticipate being released to completely return to normal activities. Again, all praise to our loving, awesome God that we know has worked in her life.
That brings me to what I am finding to be the hardest question I've had to answer in all this. Why? It started with the unbearable, why does my daughter have to go through this? And I still don't have an answer. There isn't a way to make this fair or right. She did nothing to deserve it. Like the man born blind in John 9, nothing was done that made this happen. It happened to display the work of God in her life. What a story she has.
I also found myself thinking a lot about her birth parents in China. Why am I able to give this beautiful girl something they were not able to? Why are the systems in place that separate families? Why am I allowed to enjoy and celebrate my daughter's life while they mourn the loss of a daughter that they will never see grow up? Again, I have no answers. I pray that wherever her family is that they will, one, have the opportunity to know Jesus so that some day we are all united in Heaven as one big family. And, two, that they will have a sense of supernatural peace that she is ok, is loved, and that they are remembered and honored for giving her life.
Finally, I have struggled with why did God choose to heal my daughter? Why is she healed while another family suffers unimaginable loss. Why have I cried with families as they grieved by empty beds and my arms are full? Again, I have no answers. I absolutely believe in the power of prayer and that God listens to the prayers of His people. Danae and I were so honored that so many people contacted us and encouraged us with their prayers on Jadelyn's behalf. But I also believe He hears the single mother crying all alone. I do not think that I had so great a faith that God was unnaturally motivated to heal Jadelyn. I never doubted that he COULD but never did I feel the complete assurance that He WOULD. I have come to believe that God's character is independent of my circumstances. He is Good. He is Faithful. He is Merciful. He is Loving. It's not about my actions or level of faith, I can't manipulate God to do what I want Him to do, but I can trust in His character that does not change.
I don't know why God's plan is different for each person or family. A passage that came to mind as I was reflecting is John 21:15-22 where Jesus is talking to Peter and about the call for Peter's life. Jesus told Peter that he would die a martyr's death. Peter then asked "What about John?" Jesus replied, "If I want him to live until I come, what is that to you? You follow Me." Jesus has a unique plan for each of our lives. He will use unique circumstances in each life to bring about that plan. Why does the plan for my life and Jadelyn's life include healing? I don't know, but I will follow Him. I pray that as you experience circumstances in your life that you can also say, "I may not fully understand, but I will follow Him".
If you've made it this far, thanks for reflecting with me. I hope you are able to reflect what God has done in your life. Thank you also for walking with us. We continue to be overwhelmed as we continue to experience your love and encouragement for our family. The meals, cards, and gifts have been an unexpected but unbelievable blessing. May God richly bless each of your lives with His presence and His grace!
We are in awe of the miracle of healing that He has brought about in Jadelyn's life. Her ability to fight and recover and bounce back to "normal" has left us humbled and exhausted =). How can this little person seem to have no pain? How are we going to keep her "quiet" for another 5 weeks? We understand that bone healing takes time. When you break an arm or leg they put a cast on it to protect and restrict the bone while it is healing. You can't (or at least don't want to) put a chest cast on a three year old, so the only protection her sternum gets is what she gives it. We are constantly on guard to make sure she isn't crawling around the floor, running with Jeremiah, or wresting with Joel.
We went to Jadelyn's first post-op recheck this morning. She is healing very well. The EKG and echo were very normal with little evidence that she had surgery only 8 days ago. She will continue to be on some medication for another week, but our next recheck is scheduled for a month from now. We anticipate being released to completely return to normal activities. Again, all praise to our loving, awesome God that we know has worked in her life.
That brings me to what I am finding to be the hardest question I've had to answer in all this. Why? It started with the unbearable, why does my daughter have to go through this? And I still don't have an answer. There isn't a way to make this fair or right. She did nothing to deserve it. Like the man born blind in John 9, nothing was done that made this happen. It happened to display the work of God in her life. What a story she has.
I also found myself thinking a lot about her birth parents in China. Why am I able to give this beautiful girl something they were not able to? Why are the systems in place that separate families? Why am I allowed to enjoy and celebrate my daughter's life while they mourn the loss of a daughter that they will never see grow up? Again, I have no answers. I pray that wherever her family is that they will, one, have the opportunity to know Jesus so that some day we are all united in Heaven as one big family. And, two, that they will have a sense of supernatural peace that she is ok, is loved, and that they are remembered and honored for giving her life.
Finally, I have struggled with why did God choose to heal my daughter? Why is she healed while another family suffers unimaginable loss. Why have I cried with families as they grieved by empty beds and my arms are full? Again, I have no answers. I absolutely believe in the power of prayer and that God listens to the prayers of His people. Danae and I were so honored that so many people contacted us and encouraged us with their prayers on Jadelyn's behalf. But I also believe He hears the single mother crying all alone. I do not think that I had so great a faith that God was unnaturally motivated to heal Jadelyn. I never doubted that he COULD but never did I feel the complete assurance that He WOULD. I have come to believe that God's character is independent of my circumstances. He is Good. He is Faithful. He is Merciful. He is Loving. It's not about my actions or level of faith, I can't manipulate God to do what I want Him to do, but I can trust in His character that does not change.
I don't know why God's plan is different for each person or family. A passage that came to mind as I was reflecting is John 21:15-22 where Jesus is talking to Peter and about the call for Peter's life. Jesus told Peter that he would die a martyr's death. Peter then asked "What about John?" Jesus replied, "If I want him to live until I come, what is that to you? You follow Me." Jesus has a unique plan for each of our lives. He will use unique circumstances in each life to bring about that plan. Why does the plan for my life and Jadelyn's life include healing? I don't know, but I will follow Him. I pray that as you experience circumstances in your life that you can also say, "I may not fully understand, but I will follow Him".
If you've made it this far, thanks for reflecting with me. I hope you are able to reflect what God has done in your life. Thank you also for walking with us. We continue to be overwhelmed as we continue to experience your love and encouragement for our family. The meals, cards, and gifts have been an unexpected but unbelievable blessing. May God richly bless each of your lives with His presence and His grace!
Saturday, February 4, 2017
Home!
We are going to have to follow this post up with one on the many thoughts that have been going through our minds as we process the past 72 hours. But for now, we'll stick to the facts.
We were discharged last night (Friday) only about 60 hours after this all began.... We are still a little shocked at this reality. It was great getting the boys home this morning and being a whole family again. =)
Jadelyn is doing great. We gave her Tylenol this morning to keep ahead of the pain but she hasn't complained of pain at all. We are trying to follow all the rules they gave us at the hospital. I'm pretty sure trying to walk in mommy's high heel shoes was on the "no no" list..... Unfortunately this resulted in a little tumble. I stared at her in disbelief when she said she had no pain after her fall. How can you have no pain when your sternum is broken?????? This child and her fighting spirit amazes me. God amazes me. (But reflections are for another post, right?)
We are taking the next 6 weeks more slowly. Even if it doesn't seem necessary we were assured that it is important. She will need to miss the next 6 weeks of school and dance. We will also take it a little slow in getting back into "normal" activities. We are praying that she will continue to be healthy.
As we walked out of CCU (several hours after being transferred out of ICU) Jadelyn called out to the nurse desk we had just passed her new favorite phrase that her nursery school teacher taught her, "See you round like a donut!"
Oh this sweet girl.....
We were discharged last night (Friday) only about 60 hours after this all began.... We are still a little shocked at this reality. It was great getting the boys home this morning and being a whole family again. =)
Jadelyn is doing great. We gave her Tylenol this morning to keep ahead of the pain but she hasn't complained of pain at all. We are trying to follow all the rules they gave us at the hospital. I'm pretty sure trying to walk in mommy's high heel shoes was on the "no no" list..... Unfortunately this resulted in a little tumble. I stared at her in disbelief when she said she had no pain after her fall. How can you have no pain when your sternum is broken?????? This child and her fighting spirit amazes me. God amazes me. (But reflections are for another post, right?)
We are taking the next 6 weeks more slowly. Even if it doesn't seem necessary we were assured that it is important. She will need to miss the next 6 weeks of school and dance. We will also take it a little slow in getting back into "normal" activities. We are praying that she will continue to be healthy.
As we walked out of CCU (several hours after being transferred out of ICU) Jadelyn called out to the nurse desk we had just passed her new favorite phrase that her nursery school teacher taught her, "See you round like a donut!"
Oh this sweet girl.....
Friday, February 3, 2017
Day 2 Post-Op
What a whirlwind....we started the day with BREAKFAST! Chocolate chip pancake, a banana, and vanilla yogurt. Yum! PT came by shortly after and we went for a walk including stairs and the play room. PT then signed off and said as far as they were concerned, we were good to go. Shortly thereafter, OT came by with the same result. Just before lunch, the attending Dr. came by and after conversation about how she is doing drinking, eating, etc., said no more IV fluids, ordered post-op echo and said the words we've been too excited to even hope for, "lets start planning discharge". And the allergies hit again.... ;)
Really?!?!?!? Already?!?!?!?!? Pinch me I must be dreaming. But we also just spent the morning playing with balls, doing princess stickers, and acting just like Jadelyn would act if she was tethered to a machine with wires. We are amazed at how quickly God has brought freedom from pain and restored her normal again. This was my biggest concern when she rolled down the hall to OR just two days ago, would that be the last time I saw the "normal" little girl I have come to adore and praise God for every day, that He put such a spunky, sweet amazing daughter into my life! I can say He has been faithful! In my doubt, in my worry, He has been faithful!
So now all of a sudden we are trying to plan for what the next step looks like. We know we have restricted activity for SIX weeks. We will not be jumping right back into all the activities we were part of before. All those wonderful games, books, stickers, and things that we were so incredibly gifted with will be put to use in abundance! If she's this good at day 2, how good will she be by day 42? How will we ever keep her to "reduced activity"? So again, to all who gifted us so generously, thank you! We will need every piece of quiet activity we can muster.
To all those at home, we hope to see you soon. To all those at a distance, thank you for your prayers and encouragement! It is such a joy to now lift our voice in praise to our awesome God for what He has brought about.
Really?!?!?!? Already?!?!?!?!? Pinch me I must be dreaming. But we also just spent the morning playing with balls, doing princess stickers, and acting just like Jadelyn would act if she was tethered to a machine with wires. We are amazed at how quickly God has brought freedom from pain and restored her normal again. This was my biggest concern when she rolled down the hall to OR just two days ago, would that be the last time I saw the "normal" little girl I have come to adore and praise God for every day, that He put such a spunky, sweet amazing daughter into my life! I can say He has been faithful! In my doubt, in my worry, He has been faithful!
So now all of a sudden we are trying to plan for what the next step looks like. We know we have restricted activity for SIX weeks. We will not be jumping right back into all the activities we were part of before. All those wonderful games, books, stickers, and things that we were so incredibly gifted with will be put to use in abundance! If she's this good at day 2, how good will she be by day 42? How will we ever keep her to "reduced activity"? So again, to all who gifted us so generously, thank you! We will need every piece of quiet activity we can muster.
To all those at home, we hope to see you soon. To all those at a distance, thank you for your prayers and encouragement! It is such a joy to now lift our voice in praise to our awesome God for what He has brought about.
Thursday, February 2, 2017
Progress
What a difference 12 hours makes. This morning Jadelyn was still experiencing anesthesia induced nausea, some pain and dealing with all the frustrating tubes and wires. This evening she was head bobbing, with lips pursed, and body dancing (laying down and barely moving, but body dancing none the less) while the boys sang her "The Little Drummer Boy" over the phone. I know it's not Christmas anymore but she still loves that song and asks for it frequently. If she wasn't so still she would be her completely normal self, peppy, chatty and full of questions. She ate chicken tenders, grapes and yogurt for supper.
Progress steps today: pulled chest tube and Folley catheter. Removed arterial line. Using the potty in her room. Up and taking walks down the hall. Watching basketball with dad before bed=) Her favorites of the day were still being held and I'm pretty sure it was Danae and my favorite part too!
Dr.'s are happy with her progress. Still have a couple steps to get through, an echo (heart ultrasound) sometime in the next couple days will probably be the biggest. All the nurses have been absolutely wonderful. Very attentive, patient, gentle and capable. We have appreciated each one and it's almost hard to tell them goodbye not knowing if we'll see the same one again or not.
Tomorrow we expect lots more walking and activity. Hopefully we will start talking about discharge plans but don't want to be too anxious and leave before we are ready. I (Aaron) was able to get into the Ronald McDonald House today so our housing is more stable and we are able to comfortably get through the nights.
Thank you to all who are praying and sending texts and messages. We love hearing from you and wish the hospital would allow more visitors, but we understand the importance of keeping these kids healthy as well. As our situation stabilizes, I become more and more aware of how many families are in similar or even more difficult situations. We don't know their stories but we feel their pain and worry and our hearts and prayers reach out to them as well.
Goodnight from Philly, we will update through the day tomorrow if there is opportunity or tomorrow night at least.
Progress steps today: pulled chest tube and Folley catheter. Removed arterial line. Using the potty in her room. Up and taking walks down the hall. Watching basketball with dad before bed=) Her favorites of the day were still being held and I'm pretty sure it was Danae and my favorite part too!
Dr.'s are happy with her progress. Still have a couple steps to get through, an echo (heart ultrasound) sometime in the next couple days will probably be the biggest. All the nurses have been absolutely wonderful. Very attentive, patient, gentle and capable. We have appreciated each one and it's almost hard to tell them goodbye not knowing if we'll see the same one again or not.
Tomorrow we expect lots more walking and activity. Hopefully we will start talking about discharge plans but don't want to be too anxious and leave before we are ready. I (Aaron) was able to get into the Ronald McDonald House today so our housing is more stable and we are able to comfortably get through the nights.
Thank you to all who are praying and sending texts and messages. We love hearing from you and wish the hospital would allow more visitors, but we understand the importance of keeping these kids healthy as well. As our situation stabilizes, I become more and more aware of how many families are in similar or even more difficult situations. We don't know their stories but we feel their pain and worry and our hearts and prayers reach out to them as well.
Goodnight from Philly, we will update through the day tomorrow if there is opportunity or tomorrow night at least.
Day one post op...
First off, a shout out to the Ronald McDonald House for providing a family lounge in the hospital with a computer and INTERNET ACCESS!!!!!
Jadelyn's first night went well though it notably lacked the element of sleep. (But we expected that!) =) The anesthesia, as it often does, slows down body functions and her stomach is slow in "waking up" resulting in her throwing up several times last night and this morning. Please pray with us that she'll soon be able to keep down food and fluids.
During the night they were able to take her off oxygen and this morning they removed the chest tube and urinary catheter. They are soon planning to remove the arterial lines (IV's in her arms). This means that we are oh so close to having a wagon ride around the hospital and visiting the play room.
Jadelyn is very stoic this morning. Mostly caused by pain and tiredness, I think. She is also on Morphine as needed which I am sure adds to her grogginess. Her nurses have been very good and her day nurse today is determined to get a smile out of her.
The highlight of this morning has been FINALLY getting to hold and snuggle our little girl again. She fell asleep almost immediately after being placed in my arms. It's hard to imagine how scary this must be for her and amazing to realize how much the simple concept of being held can go so far in helping her relax and heal. Ironically (or not) the song we've clung to the last few days simply says, "just be held". What a great image of God holding us and comforting us as we hold and comfort our precious little girl.
Thanks for your prayers! You are with is each moment as you help carry us through.
One more prayer request. Please pray for the boys. They are doing great but they are missing us too. We are so grateful for the great support system around them while we are away.
One quick story I have to add. Jadelyn pulled a first on her nurse this morning. At 2:30AM she decided she was tired of the cartoons on her T.V. (We had left it on for as a noise buffer through the night.) As her nurse got the remote and began going through the channels she asked Jadelyn, "What do you want to watch?" "Basketball," was Jadelyn's reply. And so it was that for the remainder of the night we watched sports. First thing this morning Jadelyn asked Aaron, "Do you like the yellow ones or the red ones or both." She's learning to talk sports already and her daddy couldn't be more proud!
Jadelyn's first night went well though it notably lacked the element of sleep. (But we expected that!) =) The anesthesia, as it often does, slows down body functions and her stomach is slow in "waking up" resulting in her throwing up several times last night and this morning. Please pray with us that she'll soon be able to keep down food and fluids.
During the night they were able to take her off oxygen and this morning they removed the chest tube and urinary catheter. They are soon planning to remove the arterial lines (IV's in her arms). This means that we are oh so close to having a wagon ride around the hospital and visiting the play room.
Jadelyn is very stoic this morning. Mostly caused by pain and tiredness, I think. She is also on Morphine as needed which I am sure adds to her grogginess. Her nurses have been very good and her day nurse today is determined to get a smile out of her.
The highlight of this morning has been FINALLY getting to hold and snuggle our little girl again. She fell asleep almost immediately after being placed in my arms. It's hard to imagine how scary this must be for her and amazing to realize how much the simple concept of being held can go so far in helping her relax and heal. Ironically (or not) the song we've clung to the last few days simply says, "just be held". What a great image of God holding us and comforting us as we hold and comfort our precious little girl.
Thanks for your prayers! You are with is each moment as you help carry us through.
One more prayer request. Please pray for the boys. They are doing great but they are missing us too. We are so grateful for the great support system around them while we are away.
One quick story I have to add. Jadelyn pulled a first on her nurse this morning. At 2:30AM she decided she was tired of the cartoons on her T.V. (We had left it on for as a noise buffer through the night.) As her nurse got the remote and began going through the channels she asked Jadelyn, "What do you want to watch?" "Basketball," was Jadelyn's reply. And so it was that for the remainder of the night we watched sports. First thing this morning Jadelyn asked Aaron, "Do you like the yellow ones or the red ones or both." She's learning to talk sports already and her daddy couldn't be more proud!
Wednesday, February 1, 2017
Surgery Day
Update on surgery. Today was a long day but good day. We really liked the surgeon who we got to meet right before surgery. He is one of the best pediatric thoracic surgeons in the world. Literally, one of the best on the whole planet. He has visited Shanghai and most likely has met the surgeon who did her first surgery. (We don't know who that might be, but it sounds like he has visited in a teaching capacity and does conferences all over the world.) He was also very aware of the exact procedure they likely used, and well prepared for what he might find during surgery. This was such an amazing experience and we are still trying to comprehend all of it. This is likely the closest connection we will ever have with her doctors and hospitalization before adoption. We are amazed again at God's goodness in providing just the person we need, right when we need them.
Surgery went well. Dr Spray was able to place a much larger conduit that included a pulmonary valve. My baby no longer has a heart murmur! That was really emotional to listen to. We still can't predict what the future holds for a long term fix, but this surgery went well.
A funny story from this morning, our anesthesiologist was Dr. Jolly. Anyone who gives laughing gas for a job should be named Dr. Jolly. He was also really nice and Jadelyn really engaged and talked to him the whole way to the OR. When we told the nurses they laughed and said he usually doesn't talk at all! Jadelyn can connect and talk to ANYBODY =).
On to recovery. Jadelyn slept most of the afternoon. She has had good pain control with the medication and seems fairly comfortable except for being frustrated that she can't be "UP". If everything continues to go well, we will probably transfer to the step down unit tomorrow.
Thank you to everyone who has prayed, posted, commented and encouraged us today. Your gifts and kindness are overwhelming and unrepayable, but know that we love each and every one of you and couldn't do this without you.
The song on the radio when we were parking this morning was the one we posted a couple days ago, "Just Be Held" by Casting Crowns. The final verse was truly our experience today and we know He is there for each day in the future.
"Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go"
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go"
Tuesday, January 31, 2017
Surgery Time
So we survived 6 hours of testing today. We are exhausted from the rigor of institutional hospital. There is no doubt they are REALLY good at what they do and we are very thankful, but it's still a hard road to work through each step. Jadelyn's surgery is scheduled to start between 7:30 and 8 am. This means we have to be at the hospital by 6. That's a really early morning, but we are also thankful because that means much less of a wait without being able to eat or drink.
Thank you all for your prayers. It feels a bit like going through an emotional rock crusher. The "this is everything that could possibly go wrong" talk was awful. And then one minute later my beautiful little girl is singing "I've got the joy, joy, joy, joy down in my heart....and I'm so happy, so really happy, I've got the love of Jesus in my heart." His grace is enough.....
Thank you all for your prayers. It feels a bit like going through an emotional rock crusher. The "this is everything that could possibly go wrong" talk was awful. And then one minute later my beautiful little girl is singing "I've got the joy, joy, joy, joy down in my heart....and I'm so happy, so really happy, I've got the love of Jesus in my heart." His grace is enough.....
Monday, January 30, 2017
Hospital Visitation
We are so very grateful for the love and support we have received and please know that we will carry it in our hearts as we head to CHOP.
CHOP has a limited visitation policy due to flu season. I'll post a link to their policy here:
http://www.chop.edu/patients-and-visitors/limited-visitor-policy
While hospital visits aren't going to be a good option, you CAN visit us through text, phone, facebook, & email......and this blog. =)
Thanks again!
Aaron and Danae
CHOP has a limited visitation policy due to flu season. I'll post a link to their policy here:
http://www.chop.edu/patients-and-visitors/limited-visitor-policy
While hospital visits aren't going to be a good option, you CAN visit us through text, phone, facebook, & email......and this blog. =)
Thanks again!
Aaron and Danae
Overwhelmed....
How do you ever begin to prepare for your daughter's heart surgery? We begin with prayer. Prayer for her healing, prayer for her doctors and surgeons, and prayer for our peace in the journey. Then we asked our church and families to pray along with us. Now we are just 48 hours away and are praying time slows down and passes quickly.
Yesterday our church blessed us with a huge care package. We can never begin to say thank you enough for all the cards, snacks, books, stufties, games, and STICKERS! Yes, Jadelyn loves stickers! =) It is an overwhelming encouragement as we prepare for the days where time passes slowly to know that there are so many people praying and standing in the gap for us. We admit we are physically and emotionally stretched already, but we are doing ok. God is faithful and He has brought us this far and will carry us through to the completion of His plan for His honor and glory. It has always been His story.
Thank you all again for your prayers and gifts of encouragement. We carry all of you in our hearts.
We don't know Jadelyn's exact surgery time yet. We will find out tomorrow (Tuesday the 31st) before 5pm. We will attempt to post around then and let you know a more exact schedule.
We have heard many songs and stories of encouragement. Today, we are trying to let go of our desire for control and let the God of the universe hold our hearts.
Wednesday, January 4, 2017
The Weight
People keep asking how we are doing. I keep telling them for the most part ok. I'm not worried but there is a weight to knowing your daughter is scheduled for open heart surgery. The following I wrote today to try to express a little bit what that is like.
The Weight
It’s never very far away…always lingering, loitering,
lurking. The smiles and laughter make a
stoic attempt at framing a lighter, airier canvas but in the end, the jocular
is replaced by the mundane and the weight
returns. This masquerade is just that, a
melted plastic façade required by a world that flaunts faux normalcy. The hardest part of carrying the weight is that I would actually
trade the realness of it for that falseness, just to be rid of its omnipresence. But I can’t.
I can lay it down, I can forcibly move my mind into other orbits and
even allow myself to be pulled into other gravitational domains, but like a
fettered ball and chain, the weight
follows and will eventually dominate again with its unending heaviness. I am tethered to it. Leashed. Tied.
Sometimes I feel it will crush me, at others, I think I might be able to
stand.
I am simply trying to
survive.
It comes at the worst times, when I am least prepared and
people see it in my distant eyes and they ask “are you ok?” I realize I dropped my mask. “I’m fine” restores the comfortable expected
for them, but I’m left with the weight. In a private moment, I will let you see the weight. It comes in tears. It’s not pretty. It isn’t what should be, but it is what
is.
How does a finite
mind with an infinite soul cope with a forced contact with the eternal hope at
the cost of immortality?
That is the weight. What if the mortal must be replaced by the
eternal? What if the finite must be
replaced by eternity? That is the weight. It is not worry, it is not fear. It is the reality that what we hope for may
come before we hoped for it.
It is knowing that
hope is only necessary because of pain.
There is a comfort; a time where the weight is not forgotten but is allowed to be set aside, a place
for the weary to find rest. And when I
rise from the place, the yoke fits well, it is balanced. His burden does not add to the weight. And when closeness allows you to see the weight don’t despair. No, you can’t make it less and you can’t
carry even the smallest fraction for me, but you can add to my strength, you
can help me stand and walk forward. You
can hold my hand, whisper in my ear and remind me of hope. Don’t try to explain the weight away. I will see
your falseness. Don’t try to minimize the weight’s significance. I will know it’s a lie.
The weight is real regardless of your denial or lack of
understanding.
Accept it with me, help me endure. Bring me back to the place of rest, if only
for a moment.
Written by Aaron on Jan. 4, 2017
I'll close with the chorus to a Bebo Norman song:
Dream a little, dream for me, in hopes that I'll remain.
Cry a little, cry for me, so I can bear the pain.
Hurt a little, Hurt for me, my future is untold.
But my dreams are not the issue here, for they, the hammer holds.
The path before me seems unclear, but it, my Maker holds.
Saturday, December 31, 2016
Surgery Date
One unexpected part of this experience for us was just how long it can take to get a surgery scheduled. I suppose we should have known being that it is a children's hospital that boasts some prestige, but even having the inside connection just having the heart catheterization there and the doctor recommending the surgery, it still took a month to get the date set. When one of us is a planner and both are admittedly control freaks, well, it stretched us a bit! We finally got the call yesterday and surgery is scheduled for February 1st. It's funny how the relief of having the date comes at the cost of the reality that it IS happening. How fickle emotions can be, but oh how real they are. All in all, we are at peace and trust that God is in control. One of the positive things about being scheduled is knowing which doctor will perform the procedure. We feel comfortable with any of the doctors that were recommended to us but having our cardiologist's top pick of doctors feels good too!
Thanks for your continued prayers!
~Aaron and Danae
Thanks for your continued prayers!
~Aaron and Danae
Wednesday, December 21, 2016
Life is an adventure...
Dear Friends and Family,
We find ourselves, once again, feeling the need to update mass amounts of people and trying to find the most effective way to do just that! To that end, we've created this blog page. We are not sure just how long we will maintain it, but for the time being, we hope it will be an adequate way of sharing our journey with you and allowing you to walk along side us.
We've been slow in sharing this update as we have been waiting for all the information to come together. As life would have it, that information has not all come together as we had anticipated and we are already feeling that "sinking" feeling of not having shared enough in a timely manner. To anyone who has first heard this from a source other then ourselves, we are sorry!
Now that we have your curiosity truly piqued, here's at least a partial update. =)
Many of you followed our adoption journey that brought sweet Jadelyn into our lives and home. She is such a blessing and fun addition to our family. She has such a sweet and feisty spirit and is determined to keep up with her brothers. She is full of life and energy and makes us laugh on a regular basis. It has been an amazing process over the last (almost) two years to watch her respond to our love and learn to interact within a family. With all the excitement of adoption, and the joy of watching her {dance, run, somersault, hop, jump, tumble, slide and bounce}her way through each day it was often easy to overlook that she was ever born with a heart condition. The only reminder for us was the regular visits with her cardiologist every three months.
{Back track}
Jadelyn was born with a heart condition known as TGA (Transposition of the Greater Arteries). In everyday words, that means that her Aorta and Pulmonary arteries (the two main ones in the heart) were flip-flopped. Normally, blood flows in a figure 8 pattern (heart to lungs to heart to body). With TGA blood flows in two closed circle patterns (heart to lungs to heart AND heart to body to heart). The problem is that oxygenated blood never goes to the body and therefore this condition is not conducive with life. However, as often is the case, Jadelyn had an additional heart condition VSD (ventricular septal defect) which means that the wall between the bottom two chambers of her heart was not complete. This allowed for her oxygen rich blood to mingle with the oxygen deprived blood and consequently, have oxygenated blood go to her body as well. Jadelyn underwent surgery in China at six months of age to have the arteries switched back to their correct places and to repair the VSD. China did a great job with these surgeries, however, adoption often has limited information and while we knew she had a repaired heart when we adopted her, we didn't know when we went to China to make her our daughter and bring her home just what her condition would look like or what (if any) interventions she would need in the days, months, and years to come. Life is an adventure, right?
{Back to Present}
Jadelyn's cardiologist has been monitoring her consistently since we have arrived home with her and has kept telling us that we are in a holding pattern and are waiting as long as possible to take any actions. It's almost what we've come to expect when we go for our visits. Our September visit was different. During her surgery in China the doctor needed to use some type of synthetic (or not Jadelyn's natural) tissue to "extend" the patch between her pulmonary artery and her right ventricle. This patch has not grown with her and consequently, as her heart has grown, she has outgrown it. The result is a narrowing that causes her heart to work too hard and enlarges her heart. Our doctor advised us that it was time for a heart catheterization to attempt to enlarge the narrow patch through a balloon procedure or stent. This procedure took place in November at the Children's Hospital of Philadelphia (CHOP) and it doesn't matter how simple the procedure is, it is NEVER easy to send your child in for it. During the procedure, it was determined that they would not be successful in enlarging the narrow patch and placing a stent also was determined to be not a sufficient option. We learned much from the imaging done through the heart catheterization which is very beneficial! The final outcome, however, was not the words we were hoping to hear. The doctor who performed the heart catheterization recommended that it is time for Jadelyn to have an open heart surgery to replace the narrow "tubing" with a larger one. We have been in the process of scheduling this procedure and while we do not have a specific date, are looking at sometime in January/February 2017.
We are a mixture of emotions as we look at the coming months. Anxiety and trust. Fear and peace. Discouragement and hope. Wanting control and needing surrender.
We are so grateful for a medical facility relatively close that is so skilled at the type of surgery she needs. (Our cardiologist described it as "changing a tire" for the surgeons at CHOP. Not at all downplaying the significance of heart surgery but encouraging us with it's "simple" nature as they are use to reconstructing hearts.) We are also grateful for our Heavenly Father who knew all this when He brought her to us - even when we didn't - and for the plan He has for Jadelyn and our family. We are trusting Him to carry us through.
Thank you for your love, support and prayers especially over the coming months. We are so very grateful for them.
~Aaron and Danae
We find ourselves, once again, feeling the need to update mass amounts of people and trying to find the most effective way to do just that! To that end, we've created this blog page. We are not sure just how long we will maintain it, but for the time being, we hope it will be an adequate way of sharing our journey with you and allowing you to walk along side us.
We've been slow in sharing this update as we have been waiting for all the information to come together. As life would have it, that information has not all come together as we had anticipated and we are already feeling that "sinking" feeling of not having shared enough in a timely manner. To anyone who has first heard this from a source other then ourselves, we are sorry!
Now that we have your curiosity truly piqued, here's at least a partial update. =)
Many of you followed our adoption journey that brought sweet Jadelyn into our lives and home. She is such a blessing and fun addition to our family. She has such a sweet and feisty spirit and is determined to keep up with her brothers. She is full of life and energy and makes us laugh on a regular basis. It has been an amazing process over the last (almost) two years to watch her respond to our love and learn to interact within a family. With all the excitement of adoption, and the joy of watching her {dance, run, somersault, hop, jump, tumble, slide and bounce}her way through each day it was often easy to overlook that she was ever born with a heart condition. The only reminder for us was the regular visits with her cardiologist every three months.
{Back track}
Jadelyn was born with a heart condition known as TGA (Transposition of the Greater Arteries). In everyday words, that means that her Aorta and Pulmonary arteries (the two main ones in the heart) were flip-flopped. Normally, blood flows in a figure 8 pattern (heart to lungs to heart to body). With TGA blood flows in two closed circle patterns (heart to lungs to heart AND heart to body to heart). The problem is that oxygenated blood never goes to the body and therefore this condition is not conducive with life. However, as often is the case, Jadelyn had an additional heart condition VSD (ventricular septal defect) which means that the wall between the bottom two chambers of her heart was not complete. This allowed for her oxygen rich blood to mingle with the oxygen deprived blood and consequently, have oxygenated blood go to her body as well. Jadelyn underwent surgery in China at six months of age to have the arteries switched back to their correct places and to repair the VSD. China did a great job with these surgeries, however, adoption often has limited information and while we knew she had a repaired heart when we adopted her, we didn't know when we went to China to make her our daughter and bring her home just what her condition would look like or what (if any) interventions she would need in the days, months, and years to come. Life is an adventure, right?
{Back to Present}
Jadelyn's cardiologist has been monitoring her consistently since we have arrived home with her and has kept telling us that we are in a holding pattern and are waiting as long as possible to take any actions. It's almost what we've come to expect when we go for our visits. Our September visit was different. During her surgery in China the doctor needed to use some type of synthetic (or not Jadelyn's natural) tissue to "extend" the patch between her pulmonary artery and her right ventricle. This patch has not grown with her and consequently, as her heart has grown, she has outgrown it. The result is a narrowing that causes her heart to work too hard and enlarges her heart. Our doctor advised us that it was time for a heart catheterization to attempt to enlarge the narrow patch through a balloon procedure or stent. This procedure took place in November at the Children's Hospital of Philadelphia (CHOP) and it doesn't matter how simple the procedure is, it is NEVER easy to send your child in for it. During the procedure, it was determined that they would not be successful in enlarging the narrow patch and placing a stent also was determined to be not a sufficient option. We learned much from the imaging done through the heart catheterization which is very beneficial! The final outcome, however, was not the words we were hoping to hear. The doctor who performed the heart catheterization recommended that it is time for Jadelyn to have an open heart surgery to replace the narrow "tubing" with a larger one. We have been in the process of scheduling this procedure and while we do not have a specific date, are looking at sometime in January/February 2017.
We are a mixture of emotions as we look at the coming months. Anxiety and trust. Fear and peace. Discouragement and hope. Wanting control and needing surrender.
We are so grateful for a medical facility relatively close that is so skilled at the type of surgery she needs. (Our cardiologist described it as "changing a tire" for the surgeons at CHOP. Not at all downplaying the significance of heart surgery but encouraging us with it's "simple" nature as they are use to reconstructing hearts.) We are also grateful for our Heavenly Father who knew all this when He brought her to us - even when we didn't - and for the plan He has for Jadelyn and our family. We are trusting Him to carry us through.
Thank you for your love, support and prayers especially over the coming months. We are so very grateful for them.
~Aaron and Danae
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