Thursday, November 15, 2012
Saturday, March 27, 2010
Tuesday, January 12, 2010
In Loving Memory
It has been three weeks since our beautiful baby passed away but it seems longer than that. In fact this new year is only a week old and it already doesn't feel new.
Until you enter the Pediatric ICU you don’t realize how important this service is. For us it was like stepping into a whole new and foreign world complete with its own language. Because Kaitlyn had Down Syndrome we prepared ourselves to be familiar with BC Children’s Hospital. But now that Kaitlyn has passed away we feel a sense of indebtedness to BCCH. The doctors and nurses were amazing. The nurses were especially patient answering all our questions even if it meant repeating themselves because the new language was hard for us to pick up. The few that we connected with on a deeper level showed us compassion and provided Kaitlyn with excellent medical care. She could not have lived her 35 days without BCCH. I can not forget our time in the ICU just as I can not forget Kaitlyn.
I had mentioned earlier that we would set up a fund in loving memory of our beloved daughter. I regret not having it set up sooner as it is important to me but I kept putting off the administration of it. In the end it was quite easy to set up.
For those who have already blessed us so we can go away on vacation, please know that a portion of everything we have received will be donated to Children's Hospital. For those who spoke to Gordon or gave money to Gordon and for those who wish to make a contribution, I have included instructions on how to make your donation. Please do not feel obligated but if ever you are looking for a good cause to make a donation to or if Kaitlyn's life touched yours we have a memorial fund set up in her name. You can contact me via email.
Eulogy by Pastor Steve Kim
If tolling bell I ask the cause.
'A soul has gone to God,'
I'm answered in a lonesome tone;
Is heaven then so sad?
That bells should joyful ring to tell
A soul had gone to heaven,
Would seem to me the proper way
Good news should be given
Joy in Death by Emily Dickinson
I share this poem because for most people joy in death is an oxymoron but the Word tells us something different about death. In Philippians 1:23 Paul says he has, “ a desire to depart, and be with Christ, which is far better”. The word, “depart” that Paul uses means, “to loose up”, is referring to an anchor. It is used to describe a ship as it leaves its temporary moorings.
I don’t know about you but if you have ever been on a cruise you will know what I mean when I describe that feeling as you stand on the deck as the ship pulls out of the dock. There is an anticipation and excitement about the new destination mixed with pity for those being left behind waving on the dock. For those standing on the dock there is sadness mixed with happiness for their loved ones on the ship, sadness because they will miss them but happiness knowing they are heading for a great destination. This is how death is for us. It is goodbye until we see you again. We understand this oxymoron. We understand joy mingled with sadness.
19For what is our hope or joy or crown of boasting before our Lord Jesus at his coming? Is it not you? 20 For you are our glory and joy…
1Th 2:19-20
And whenever the living creatures give glory and honour and thanks to him who is seated on the throne, who lives forever and ever, 10 the twenty four elders fall down before him who is seated on the throne and worship him who lives forever and ever. They cast their crowns before the throne, saying,
“Worthy are you, our Lord and God,
To receive glory and honour and power,
For you created all things,
And by your will they existed and were created.”
Rev4:9-11
The crowns are the lives that we have impacted for God during our lifetime. Crowns are treasures, we are those treasures. When we stand before God in Heaven we honor him and give him glory by laying our crowns at his feet. We are so proud and happy for Kaitlyn because she goes to a glorious celebration in Heaven and she is not empty handed. She has many crowns. Look around you at all the people gathered here today at her life celebration. There are many more that could not be here including friends and strangers all over the world that her life has touched. She has many crowns. I am one of those crowns. I thought she was my mission. Every week we were committed to meeting and praying for Kaitlyn when she was in Clara’s womb. God answered so many of our prayers. She grew exponentially when we prayed for growth, her brain developed in ways that doctors said that would never happen at that stage of growth. She even leapt in the womb whenever we prayed. Now I see that I was her mission.
When I was in China I met a young girl with Down Syndrome. She really touched my heart. So when Kaitlyn was born I had visions of playing with Kaitlyn. When I first met Kaitlyn the day after she was born I said Kaitlyn is so cute. I kept saying how cute she was. She may have been born with Trisomy 21 but who is perfect? None of us are perfect. What is perfection? But in her, as also in us is the image of God. Kaitlyn reminded me that we are all less than perfect, we are all in dying bodies, but if we have the eyes to see, if we look beyond our own imperfections we find God’s image in each other, we find love because God is love.
Kaitlyn was very sick. We had come to visit her at the hospital when she started to struggle with her breathing. There was a quiet chaos as the nurses worked to help Kaitlyn breath and bring her heart rate back down. We stood back as they worked. When the nurses were satisfied and they allowed us to move back to her bedside I looked down at Kaitlyn. I got real close and smiled at her to send her some happiness. I will never forget how she smiled back at me.
At once I was in the Spirit, and behold, a throne stood in heaven, with one seated on the throne. 3 And he who sat there had the appearance of jasper and carnelian, and around the throne was a rainbow that had the appearance of an emerald. 4 Around the throne were twenty-four elders, clothed in white garments, with golden crowns on their heads. 5 From the throne came flashes of lightning, and rumblings and peals of thunder, and before the throne were burning seven torches of fire, which are the seven spirits of God, 6 and before the throne there was as it were a sea of glass, like crystal.
Rev 4:1-6
The sea is usually a symbol of the world which is filled with confusion and chaos. But in this passage it says that God is seated on his throne before a sea of glass. The sea is so calm it looks like glass. In Kaitlyn’s one smile God spoke volumes. It was as if He were saying, why are you so troubled, I’ve got this son, I’m in control.
Her story is not finished yet. He is in control. He is still writing the story. There are seeds sown in each of us, all of us that have yet to bear fruit. God is not a vending machine. Often times we want to control our lives and circumstances and we want God to do things our way. But God in his infinite wisdom is in control. We may not understand it all the time but God’s wisdom is not man’s wisdom. Sometimes God’s wisdom is mysterious to us and we have to submit to that. We have to embrace it all and trust in God’s goodness and love. There are secret things that only belong to our Lord;
“The secret things belong to the LORD our God, but the things that are revealed belong to us and to our children forever, that we may do all the words of this law”. Deut 29:29
I was impacted by Kaitlyn’s smile but I was also impacted by her fight. I remember when we prayed for her in Clara’s womb and she would begin to move. It was as if she was making a fist as if fighting. She was a fighter. Her heart beat for 37 minutes after she had stopped breathing.
A “ tent” is a frail structure, designed only for temporary occupation, no matter how nice we make our tents, it is only temporary. The reality was that Kaitlyn was very sick and she died early but death is something we all face because we live in these temporary tents. It is to remind us that this earth is not our home. This body that we live in is not permanent. It will wear down with time. Death is a fate we all face. Disease, sickness, death; Kaitlyn’s death is of this world. It reminds us of this truth, that we live on this earth we live in these tents. We fight but not to fight death or necessarily change our tents but because we know our home is Heaven where there is no sickness or death. We fight to bring this Heavenly reality here on earth.
The Lord’s Prayer says,
“ Our Father who are in Heaven
Let your Kingdom come
Let you will be done on earth as it is in Heaven”
In our church we pray for healing because in Heaven there is no sickness. We have seen some astonishing miracles but we have also had defeats. Does Kaitlyn’s death mean I will stop praying for healing? No, in honour of Kaitlyn I am going to fight even harder, pray even more.
Death is not a beautiful thing or word, but it is something that Christ died to overcome. We fight to remind people of a greater destination, we fight for miracles, we fight for health, we fight death and all the signs of death; disease and sickness. We fight to show people a glimpse of heaven here on earth. We fight for people to desire heaven and remind them that this life on earth and our bodies are just temporary tents. We fight with a confident faith because although we do not win every battle we know that God will have the final say and victory.
14Since the children have flesh and blood, he too shared in their humanity so that by his death he might destroy him who holds the power of death – that is, the devil 15 and free those who all their lives were held in slavery by their fear of death.
Hebrews2:14
Jesus didn’t perform any funerals and neither will I. There is joy despite death because God has conquered death and we fight for the full reality of that truth to be consummated in the world.
Kaitlyn's Memorial - slideshow to come
It was a beautiful day. The air was crisp, the sky was clear and the sun was shining. This is a rare treat in Vancouver in the Winter.
We started the celebration with worship to invite the presence and glory of God into our celebration. It was beautiful. We asked Pastor Steve to do Kaitlyn’s eulogy. This was powerful and authoritative. I will post Kaitlyn’s eulogy but apologize because I don’t think it captures the same passion with which it was delivered. In preparation of Kailtyn’s memorial Paul and I thought about final words we wanted to share but we were speechless. After blogging so much I didn’t have many words left to say. But at the heart of it I think we both just wanted Kaitlyn’s celebration of life to speak louder than words. I felt like words would be forgotten but the spirit of our celebration would remain as a beautiful memory. As you can see more than anything I can write to describe the day, the spirit of Kaitlyn’s memorial is captured in the photos.
In the spirit of fun we asked our guests to wear pink. We were touched that so many people made the effort. There were those who wore loose shades of pink slash purple and those who went out and bought something pink. After shopping for Paul I know how hard it was to find pink menswear and only in hindsight as we shopped did I realize that purple was the colour of the season. We nominated and voted for the best dressed. Although Justin wore a head to toe pink outfit, as the MC he was not allowed to be nominated. For some reason Paul was nominated and voted as the best dressed in his pink argyle sweater. However I passed the prize on to Ed Ko who wore pink shoe laces and a pink belt!
Linda Dart was one of Kaitlyn’s nurses whom I have mentioned a few times in our blog. Although all the nurses were excellent, Linda Dart went above and beyond her duty. She cared for Kaitlyn as I would have if I were a nurse. I felt reassured whenever I knew Linda was looking after Kaitlyn. Linda was also our nurse the day Kaitlyn passed away. She actually stayed past her 7pm when her shift ended and stayed with us till 11pm. In fact one of the reason we chose not to drag out this process was because of Linda and Dr. Pittfield. In our short time in the ICU we had met many doctors. Dr Pittfield was the Pediatric Intensivist on rotation when Kaitlyn was taken in for her last emergency surgery. We had a very difficult conversation with him about whether or not to continue Kaitlyn’s life support but he was able to present the medical information yet be compassionate in a professional way. We appreciated this and found it important that we were surrounded by these two people in Kaitlyn’s last moments. We could not bear to have to connect with a new doctor and have to share our most difficult moment in life with them. Although Dr. Pittfield was unable to attend Kaitlyn’s memorial, Linda came and we honoured her with a gift and she shared a few words about her role in the ICU. Linda happened to be part of palliatative team in the ICU. When she began her rotation with Kaitlyn during one of her earlier critical moments she had to reassure me that she was not assigned to our case because of her role on the end of life care team. Linda has many gifts and talents, she had worked a few years doing wedding photography so she captured some beautiful moments with Kaitlyn before and after she passed away. We appreciated her care not only for Kaitlyn but for us during our time in the ICU.
Before the meal we did a quick scavenger hunt. Each table had to collect five items and race to the front to be the first at the buffet table. They had to find a ten dollar bill, lip stick/ lip gloss, a kid’s shoe, a key chain and gum. I was surprised at how quickly some groups found these things.
The food was delicious but I must admit that the day was like our wedding day. I didn’t really eat as much as I would have had I been a guest. It wasn’t as if I was stressed because Hanna did an awesome job keeping everything running on time. I guess I didn’t have the luxury to enjoy my meal because as a host I walked around to talk to people.
The Eulogy is still a work in process. We didn’t video tape our celebration so I had to recreate the eulogy from notes and memory. I will post this once Ps Steve has read my draft. I also need Paul to upload our slideshow...should be up tonight :)
Wednesday, January 6, 2010
Preparations
People have been telling me that they can’t read our blog without crying. So here are some funny stories. I can’t tell you about the memorial without telling you the funny things that happened as we made our preparations. We had a week to prepare for the memorial and Christmas was sandwiched in between. We didn’t want to spend the whole time running around like headless chooks. We also wanted to enjoy our Christmas with my family who had driven up from Portland.
I wanted to have a tree to symbolize life and hope as we carry on our lives after Kaitlyn's death. Stephanie made beautiful white cards attached to ribbon to hang from the tree. I wanted to invite out guests to write about how God spoke to them through Kaitlyn’s life so that we can keep these testimonies as a keepsake. We drove up and down Number 6 road in Richmond looking for any nursery that was opened this time of the year. At the first nursery about a hundred meters down the drive we passed a run down tin shack. Out of this shack peered two men sitting around a fire in a barrel. I felt like we had driven into another land. We told one of the men that we were looking for a fruit or cherry tree as and as he guided us on the boggy grounds we weaved in and out among saplings and trees. Because it is Winter none of the trees had any foliage and none of the trees were labelled so at times when I asked what kind of tree it was he said he didn’t know. In the end we decided on a magnolia tree. We joke that in the Spring we shouldn’t be surprised if we find lemons growing from our tree.
The magnolia tree is one of my favourite trees. As a child I remember sitting in the back seat of the car and counting the houses with Magnolia trees in the front yard. I could tell which ones were Magnolia trees because they were so straight with their branches pointing up the sky. Some of them would have large budding Magnolias. I also remember the old lady that lived up the road from us who had a beautiful old Port Wine Magnolia in her front yard and as a child thinking when I have my own home that I will have a Magnolia tree planted in the front yard. Well I’m not a child anymore and I own my own Magnolia. We just have to buy a house now!
Since we don’t own our yard where we can plant our Mangolia tree we are going to keep our tree in the pot so we can transport it when we buy our own house. Because we couldn’t trust these nursery owners to tell us anything about these plants I called Aeri and asked her to google Magnolias. She found out that these trees can live in it’s pot for 6-7 years and are quite easy to look after. It was the perfect choice for us since I have not been able to keep any plant given to us over the years alive.
Planning Kaitlyn’s memorial was like planning for a wedding. We had found little frosted cups painted with the words, “Faith”, “Love” and “Hope”. We filled these cups with peanuts in memory of our little peanut and had coloured helium balloons tied in a bouquet as a centre piece on each table.
Kaitlyn’s memorial was a celebration. We held this at the Brock House which overlooks Jericho Beach. I had visited the venue a few days before and the huge windows were draped with tacky Christmas wreaths and the window sills strewn with tacky little plastic Christmas trees and those ugly Pointsettas. Although I had requested that these be removed for the day I was given a the vague promise that they would try but didn’t think it was likely. So on Sunday morning it was nice to walk in and see that the windows and sills were bare and the view unadulterated.
We wanted Kaitlyn’s memorial to be a celebration. We didn’t want a somber funeral so we decided to have fun. With this in mind we asked our guests to wear pink. At first Paul would not agree to this. Not only does my husband not own anything remotely pink, his whole wardrobe consists of navy, black and grey. So of course we had to go shopping on Boxing Day, the busiest day of the year to even step into a mall. We picked up a pink argyle sweater. My husband refused to remove the price tag as he has no intention of keeping this!
Friday, January 1, 2010
Taboo
For those reading this chapter I want to highlight that this is simply the real process that Paul and I went through to decide on the final arrangements for Kaitlyn’s body. I hope not to offend any with my thoughts and want to stress that I give the utmost respect and dignity to those who have had to or have to make these preparations for their loved ones.
The day after Kaitlyn died we slept in. Throughout the day we talked vaguely about plans for her body. We tossed out our thoughts like leaves carried away by the wind. We were too tired but we knew that the clock was ticking and it wasn’t going to wait for us. On Saturday we decided to explore some cemeteries. It felt like we were shopping for a house. I wanted to make sure the lay of the land was pleasing to the eye and had a good vibe about it. Almost as if she should have a good view from the dirt. I forgot that she already had the penthouse view.
We really didn’t know whether we wanted to bury her or cremate her. I was afraid of burial because I didn’t like the thought of her body decomposing in the ground but I was afraid of cremation because fire is painful way to die…I know these thoughts are irrational but our emotions are powerful and they can drive us in an irrational way. I was aware of this yet it didn’t help me decide what was best for our baby.
As we discussed the cost of buying a plot of land vs a niche we found that prices varied depending on whether the plot was close to the perimeter of the cemetery or in a nicer part of the grounds and whether the niche was at eye level or close to the ground. We had almost decided to buy a plot of land where Paul and I could have our cremated remains buried with Kaitlyn in the future. It even offered the option of burying a casket if one of us changed our minds about cremation. But as we sat in the office surrounded by different styles and sizes of tomb stones Paul said he felt uncomfortable with the money making aspect of their business. When we talked to the funeral director about embalming we decided that this wasn’t what we wanted. We didn’t want to recreate her to look lifelike again. We had our memories of Kaitlyn and we didn’t want to hang onto her body. For me this was the tipping point. It helped me to decide that we wanted to cremate.
As Christians we had to wonder about what our bodies meant to us when we are dead. We had to let go of a ungodly untruths in our head and the natural desire to take comfort or security just in case we might need our bodies after death. We really had to sort through the hidden death catalogue in our head and sift through it to find what we really believed about life after death.
At the end of this process we decided that the traditional funeral service and burial was not for us. It was hard to let go of tradition or the usual or common way of dealing with death. We wanted to and needed let go of all ties to Kaitlyn’s body knowing with a bold faith that her soul was in Heaven. We asked the Funeral Home to cremate Kaitlyn before Christmas and we appreciate the effort they made to respect our wishes given the logistics they had to take care of to make this happen.
Although Linda had made beautiful prints of Kaitlyn’s hands and feet after her death I wanted to get a reprint of Kaitlyn’s hands and feet because I wanted to get a keepsake pendant engraved with a scanning of her prints. However the thought of them carelessly washing off the ink made me restless. In the end I decided to forgo the prints for the peace of knowing that Paul and I were the last to bathe her after she died. This led me to looking into witnessing her cremation. I had heard that bodies sit up when in the fire and this vision in my mind made me hastily check no when we had signed the original paperwork to authorize the Funeral Home to take care of her body. To some witnessing cremation may sound morbid but to me it was driven by the deep inherent mother’s need to protect her child. Although I was careful to not be attached to her body, I needed to give her body the respect and dignity that I felt that only we could give her because only Paul and I loved her like no other.
So on December 24th we confirmed her body was in the little cardboard box. Paul carried her in the box to the Crematorium. He placed her in the retort and we watched the door seal shut. Some people go as far as turning on the machine but we allowed them to do their job and we left.
For some Christmas Eve may seem untimely. But I took comfort in knowing that we remember and celebrate Christ on Christmas day who came to turn our mourning into gladness and our sorrow into joy. This is the way I want to remember this day.
The day after Kaitlyn died we slept in. Throughout the day we talked vaguely about plans for her body. We tossed out our thoughts like leaves carried away by the wind. We were too tired but we knew that the clock was ticking and it wasn’t going to wait for us. On Saturday we decided to explore some cemeteries. It felt like we were shopping for a house. I wanted to make sure the lay of the land was pleasing to the eye and had a good vibe about it. Almost as if she should have a good view from the dirt. I forgot that she already had the penthouse view.
We really didn’t know whether we wanted to bury her or cremate her. I was afraid of burial because I didn’t like the thought of her body decomposing in the ground but I was afraid of cremation because fire is painful way to die…I know these thoughts are irrational but our emotions are powerful and they can drive us in an irrational way. I was aware of this yet it didn’t help me decide what was best for our baby.
As we discussed the cost of buying a plot of land vs a niche we found that prices varied depending on whether the plot was close to the perimeter of the cemetery or in a nicer part of the grounds and whether the niche was at eye level or close to the ground. We had almost decided to buy a plot of land where Paul and I could have our cremated remains buried with Kaitlyn in the future. It even offered the option of burying a casket if one of us changed our minds about cremation. But as we sat in the office surrounded by different styles and sizes of tomb stones Paul said he felt uncomfortable with the money making aspect of their business. When we talked to the funeral director about embalming we decided that this wasn’t what we wanted. We didn’t want to recreate her to look lifelike again. We had our memories of Kaitlyn and we didn’t want to hang onto her body. For me this was the tipping point. It helped me to decide that we wanted to cremate.
As Christians we had to wonder about what our bodies meant to us when we are dead. We had to let go of a ungodly untruths in our head and the natural desire to take comfort or security just in case we might need our bodies after death. We really had to sort through the hidden death catalogue in our head and sift through it to find what we really believed about life after death.
At the end of this process we decided that the traditional funeral service and burial was not for us. It was hard to let go of tradition or the usual or common way of dealing with death. We wanted to and needed let go of all ties to Kaitlyn’s body knowing with a bold faith that her soul was in Heaven. We asked the Funeral Home to cremate Kaitlyn before Christmas and we appreciate the effort they made to respect our wishes given the logistics they had to take care of to make this happen.
Although Linda had made beautiful prints of Kaitlyn’s hands and feet after her death I wanted to get a reprint of Kaitlyn’s hands and feet because I wanted to get a keepsake pendant engraved with a scanning of her prints. However the thought of them carelessly washing off the ink made me restless. In the end I decided to forgo the prints for the peace of knowing that Paul and I were the last to bathe her after she died. This led me to looking into witnessing her cremation. I had heard that bodies sit up when in the fire and this vision in my mind made me hastily check no when we had signed the original paperwork to authorize the Funeral Home to take care of her body. To some witnessing cremation may sound morbid but to me it was driven by the deep inherent mother’s need to protect her child. Although I was careful to not be attached to her body, I needed to give her body the respect and dignity that I felt that only we could give her because only Paul and I loved her like no other.
So on December 24th we confirmed her body was in the little cardboard box. Paul carried her in the box to the Crematorium. He placed her in the retort and we watched the door seal shut. Some people go as far as turning on the machine but we allowed them to do their job and we left.
For some Christmas Eve may seem untimely. But I took comfort in knowing that we remember and celebrate Christ on Christmas day who came to turn our mourning into gladness and our sorrow into joy. This is the way I want to remember this day.
The Grand Finale?
The Grand Finale
I remember when I was younger I wondered how people in any field that worked with dead bodies could do what they do. But as we spent out final hours with Kaitlyn after she had passed away, I wasn’t freaked out at all and realized that dead bodies were once live people loved by others. We lovingly bathed her and took photos with her so that we can look at these and remember our little baby. We were able to hold her the way every parent should be able to hold their little baby. I had always wanted to hold her on my chest but because of her ventilator we were only able to cradle her in our arms with great care so as not to cause further trauma to her throat. She looked so peaceful as if she was sleeping. It was a blessing to hold her and see her with no tubes attached. It reminded me of what a miracle pregnancy is. That God sustained her prefectly in the womb without any tubes or intervention. It was as if we had a stolen moment with our baby. So when we went to the Funeral Home on Monday December 22nd to confirm that the body they picked up was indeed our little baby we smiled at how cute she looked. A nurse had called her a little peanut. This brought joy and delight to me because I remembered her first ultrasound photo where she truly looked like a little peanut. I have this now engraved on my pendant, "my little peanut".
Throughout Paul’s response has been different from mine except for when she was born. We both cried and grieved from the moment she was born. We mourned the loss of a future we had envisioned for our little baby. It was a roller coaster ride because when we met Kaitlyn she captured our hearts and we fell in love with her. We began to accept and embrace a new future. There certainly were dips and peaks as we embarked on our journey of contending for her life. Paul was stoic and strong throughout her short life but when we were given time with Kaitlyn’s body at the Funeral Home Paul sobbed. He did a lot of his crying after she died. For me the biggest challenge was letting go in my heart. I cried so much that I felt like I had no tears left to cry as I held her as she died. I have not mourned for our little Kaitlyn since then. I’ve managed to keep myself busy with planning her memorial and spending time with my family. As I write these final chapters I feel the sadness of our loss. But I want to keep writing, to finish telling as much of the story that I know about because I know God wants to unfold His untold portion in our lives.
I remember when I was younger I wondered how people in any field that worked with dead bodies could do what they do. But as we spent out final hours with Kaitlyn after she had passed away, I wasn’t freaked out at all and realized that dead bodies were once live people loved by others. We lovingly bathed her and took photos with her so that we can look at these and remember our little baby. We were able to hold her the way every parent should be able to hold their little baby. I had always wanted to hold her on my chest but because of her ventilator we were only able to cradle her in our arms with great care so as not to cause further trauma to her throat. She looked so peaceful as if she was sleeping. It was a blessing to hold her and see her with no tubes attached. It reminded me of what a miracle pregnancy is. That God sustained her prefectly in the womb without any tubes or intervention. It was as if we had a stolen moment with our baby. So when we went to the Funeral Home on Monday December 22nd to confirm that the body they picked up was indeed our little baby we smiled at how cute she looked. A nurse had called her a little peanut. This brought joy and delight to me because I remembered her first ultrasound photo where she truly looked like a little peanut. I have this now engraved on my pendant, "my little peanut".
Throughout Paul’s response has been different from mine except for when she was born. We both cried and grieved from the moment she was born. We mourned the loss of a future we had envisioned for our little baby. It was a roller coaster ride because when we met Kaitlyn she captured our hearts and we fell in love with her. We began to accept and embrace a new future. There certainly were dips and peaks as we embarked on our journey of contending for her life. Paul was stoic and strong throughout her short life but when we were given time with Kaitlyn’s body at the Funeral Home Paul sobbed. He did a lot of his crying after she died. For me the biggest challenge was letting go in my heart. I cried so much that I felt like I had no tears left to cry as I held her as she died. I have not mourned for our little Kaitlyn since then. I’ve managed to keep myself busy with planning her memorial and spending time with my family. As I write these final chapters I feel the sadness of our loss. But I want to keep writing, to finish telling as much of the story that I know about because I know God wants to unfold His untold portion in our lives.
Tuesday, December 22, 2009
Destiny
I have been deeply impacted by people’s responses. It confirms what we knew and fills us with joy despite our sadness. I felt God tell me that Kaitlyn’s destiny will encompass many people. I think I actually blogged this in one of my early entries. It fills me with joy to hear people glorify our God.
I may speak prematurely but for now I believe that destiny is two fold. We seek and activate our destiny by walking in faith and obedience. But I also believe that part of our destiny is fulfilled when we rest in God because it’s not only about what we do but who we are.
Kaitlyn was a baby whose spirit and testimony has touched many. Just as Paul and I were her advocates during her time in hospital, we are the voice telling her story. Kaitlyn’s story is her God given destiny.
I may speak prematurely but for now I believe that destiny is two fold. We seek and activate our destiny by walking in faith and obedience. But I also believe that part of our destiny is fulfilled when we rest in God because it’s not only about what we do but who we are.
Kaitlyn was a baby whose spirit and testimony has touched many. Just as Paul and I were her advocates during her time in hospital, we are the voice telling her story. Kaitlyn’s story is her God given destiny.
Perfection
This word had been prayed and spoken over Kaitlyn so many times. Our pastors and a few people committed to pray for us met every Monday night to pray for Kaitlyn when she was still in my womb. At the time we received this word to mean we were praying Heaven onto earth to bring healing and perfection in her body. However as I look back on her short life I realize that this word means that our love for her is perfect. In the end, the Word says that God is love…we place our eyes on our God and know that as we rest in His love that we see perfection.
God’s Wisdom
Our Community Group had prayed over us God’s wisdom on Wednesday night. God answered this prayer through the voice of my mother on Thursday morning. God’s wisdom is different from our own wisdom because God’s wisdom also holds mystery. I had mentioned earlier that Kaitlyn’s name means, `pure’. Well Kaitlyn’s Korean name, Gee Hae, means God’s wisdom. We are only able to embrace this because we know that God is good all the time and trust in His great love for all of us.
Monday, December 21, 2009
We are all Heaven Bound
I've been waking up at early hours of the morning to pump. I was expressing milk for Kaitlyn but now I'm trying to stop production...it's at these early hours of the morning that I have been thinking and writing. I have many more thoughts I would like to share, however, I haven't had the time to post them as we have also been busy deciding on how we wanted to take care of Kaitlyn's body. I hope that you will continue to follow Kaitlyn's story as God is continuing to speak to me. Kaitlyn has impacted me in such a way that what was a drought in my life is now a floodgate of revelation.
We know that our citizenship is in Heaven. I remember having a conversation once about what the big deal was about Heaven. It was like talking about a trip to some foreign county I knew nothing about. But since then life has been like one of those Lonely Planet guides. Through our experiences God reveals Himself if we are willing to hear and see. These revelations should lead us to ponder about and eventually yearn for Heaven where we spend all eternity with God.
That week Pastor Steve had come to speak to us. It was the day after Kaitlyn smiled at him. I was tired and my glasses were irritating my nose. I took them off but when I looked back up at Pastor Steve I couldn't hear him clearly. I have to explain that I am profoundly deaf in my left ear so when there is surrounding noise it helps me to read lips. Later God spoke to me through this to say that as much as I am seeking to hear His voice, I need to look to Him too.
On Kaitlyn's last day I kept looking at the monitor to check how her heart was doing. I kept looking for signs of the promise of life. I had to be sure. You can ask Linda if you have the pleasure of meeting her. I kept asking her over and over whether she thought that Kaitlyn's numbers were stabilizing. Because the nurses had told me to look to see what Kaitlyn was telling me I began to entertain doubt and confusion. As the Rock wore off and she began to open her eyes and move I began to think, maybe she's telling us she still has the strength to keep going. Throughout the day I was filled with anxiety and stress. Then I remembered what God had spoken to me about. To keep my eyes on Him. Not only to try hear His voice for direction but to look to Him only. I had to take my eyes off the numbers, I had to take my eyes off my little Kaitlyn and look to Him.
We have faith and peace that Kaitlyn is in Heaven. I chose the name Kaitlyn because it meant, `pure'. At first I chose this because even if she had Trisomy 21, I wanted to speak this word over her life, that she is pure; perfect.
I believe that God gave Kaitlyn a special assignment. It was short and she fulfilled it. For some of us we have to spend a lifetime searching for God or working out our salvation. But God allowed Kaitlyn to remain pure as a babe and complete her mission. This mission was simply to touch the lives of many...that Christ's glorious light may shine and lead people a little bit closer to home, to Him. Sometimes in our search for truth and identity we overthink things and get frustrated or feel lost but it's usually simpler than we think. We just have to keep our eyes on Christ. He is always about relationship and He always touches people's lives in big and small ways. I know that Kaitlyn's spirit and all that God is doing has touched the lives of many.
We know that our citizenship is in Heaven. I remember having a conversation once about what the big deal was about Heaven. It was like talking about a trip to some foreign county I knew nothing about. But since then life has been like one of those Lonely Planet guides. Through our experiences God reveals Himself if we are willing to hear and see. These revelations should lead us to ponder about and eventually yearn for Heaven where we spend all eternity with God.
That week Pastor Steve had come to speak to us. It was the day after Kaitlyn smiled at him. I was tired and my glasses were irritating my nose. I took them off but when I looked back up at Pastor Steve I couldn't hear him clearly. I have to explain that I am profoundly deaf in my left ear so when there is surrounding noise it helps me to read lips. Later God spoke to me through this to say that as much as I am seeking to hear His voice, I need to look to Him too.
On Kaitlyn's last day I kept looking at the monitor to check how her heart was doing. I kept looking for signs of the promise of life. I had to be sure. You can ask Linda if you have the pleasure of meeting her. I kept asking her over and over whether she thought that Kaitlyn's numbers were stabilizing. Because the nurses had told me to look to see what Kaitlyn was telling me I began to entertain doubt and confusion. As the Rock wore off and she began to open her eyes and move I began to think, maybe she's telling us she still has the strength to keep going. Throughout the day I was filled with anxiety and stress. Then I remembered what God had spoken to me about. To keep my eyes on Him. Not only to try hear His voice for direction but to look to Him only. I had to take my eyes off the numbers, I had to take my eyes off my little Kaitlyn and look to Him.
We have faith and peace that Kaitlyn is in Heaven. I chose the name Kaitlyn because it meant, `pure'. At first I chose this because even if she had Trisomy 21, I wanted to speak this word over her life, that she is pure; perfect.
I believe that God gave Kaitlyn a special assignment. It was short and she fulfilled it. For some of us we have to spend a lifetime searching for God or working out our salvation. But God allowed Kaitlyn to remain pure as a babe and complete her mission. This mission was simply to touch the lives of many...that Christ's glorious light may shine and lead people a little bit closer to home, to Him. Sometimes in our search for truth and identity we overthink things and get frustrated or feel lost but it's usually simpler than we think. We just have to keep our eyes on Christ. He is always about relationship and He always touches people's lives in big and small ways. I know that Kaitlyn's spirit and all that God is doing has touched the lives of many.
It's not over
I have many more thoughts I would like to share. We have been busy taking care of the final arrangements for Kaitlyn and busy organizing her memorial celebration so I just have not had the chance to post my thoughts. Please keep following Kaitlyn's story. It's not over!
Thank you to my family and friends in Sydney who have been calling, writing and thank you Angela and Michael for the beautiful flowers.
For those wanting to send flowers please consider making a donation to Children's Hospital. I say this with care because I would hate for people to feel obliged. There will be more details to follow regarding this.
Thank you to my family and friends in Sydney who have been calling, writing and thank you Angela and Michael for the beautiful flowers.
For those wanting to send flowers please consider making a donation to Children's Hospital. I say this with care because I would hate for people to feel obliged. There will be more details to follow regarding this.
Friday, December 18, 2009
TBA
Due to unforseen circumstances we will announce a date to save for Kaitlyn's memorial. On Monday I might know what date to save once some details are sorted out to allow Cath and Ron to be able to join us and celebrate Kaitlyn's life with us. I will be sure to blog ahead of time to allow people time to save the date during this busy Christmas season.
I would also like our nurse Linda Dart to join our celebration and would like to co-ordinate around her rotation.
It’s a one way ticket to Heaven
To clarify, we made Kaitlyn comfortable as she breathed her last breaths. We allowed her to do what she was meant to do. We could not allow machines and drugs to continue to sustain her breath if God was calling her home. We can not fight God. After coming to peace with this, we knew we could walk through the fire and hold our baby and watch her pass away. Not everyone has the gift of holding their loved one as they pass on so we are truly honoured and privileged.
We did not cry as she breathed her last breath. We had our hand on her heart as it beat slower and slower and finally stopped. We gazed upon the peace in her face. I prayed out loud, even in front of the doctor and nurses in the room…as foolish as it sounded I prayed that God would raise her from the dead with the same power that raised Christ from the dead. I did this so I would not regret that I failed to pray this prayer in fear of looking foolish. Looking back I realize that I prayed this out of emotion…had I looked to God I would have known His will and prayed according to this, “go in peace”. I wonder if people think that our God is powerless when He doesn’t come and perform the miracle we cry out for. But I know that God is bigger than me and that His grace is sufficient for me. I know that He says it’s ok…I prayed as any mother would.
Time and time again I have learned that we suffer and struggle when we fight God. I’ve also learned that these lessons never get easier even when I’ve learned that when we let go and stop fighting God that there is peace. I believe we could not squeeze a tear out as we let our daughter go because we had peace. This peace gave us confidence and strength to endure what no parent should have to experience. We were finally ready. Kaitlyn was already ready and waiting, just as God was waiting to receive her.
We want people to know that we are going to celebrate her life. Although it was 35 days her on earth, her life in heaven is eternal.
We did not cry as she breathed her last breath. We had our hand on her heart as it beat slower and slower and finally stopped. We gazed upon the peace in her face. I prayed out loud, even in front of the doctor and nurses in the room…as foolish as it sounded I prayed that God would raise her from the dead with the same power that raised Christ from the dead. I did this so I would not regret that I failed to pray this prayer in fear of looking foolish. Looking back I realize that I prayed this out of emotion…had I looked to God I would have known His will and prayed according to this, “go in peace”. I wonder if people think that our God is powerless when He doesn’t come and perform the miracle we cry out for. But I know that God is bigger than me and that His grace is sufficient for me. I know that He says it’s ok…I prayed as any mother would.
Time and time again I have learned that we suffer and struggle when we fight God. I’ve also learned that these lessons never get easier even when I’ve learned that when we let go and stop fighting God that there is peace. I believe we could not squeeze a tear out as we let our daughter go because we had peace. This peace gave us confidence and strength to endure what no parent should have to experience. We were finally ready. Kaitlyn was already ready and waiting, just as God was waiting to receive her.
We want people to know that we are going to celebrate her life. Although it was 35 days her on earth, her life in heaven is eternal.
Garden of Gethsemane
Because Paul and I have so many thoughts and feelings, we will share this in increments so as not to overwhelm you with having to read essays – It's not over. Yes, we have that much more to share.
I don’t think I can say that this is the same as facing crucifixion and all that Christ faced but I know what it’s like to face death and pray to God, “Please take this cup away, not my will but your will.”
At 3am I called to check in with our nurse, Christina, as Kaitlyn had been in a very fragile state since her surgery onTuesday when her heart stopped for 9 minutes. Overnight her heart rate had been dipping down into the 70s. Her previous surgeries showed Kaitlyn’s heart rate had been in the hundred-teens. A healthy newborn heart rate is expected to range from the 120-160. In the 60s a baby’s heart rate is considered the same as a flat line as there is not enough oomph to pump the blood around the body sufficiently. Her profusion was the worst we have ever seen it. This meant that her body was stressed and was drawing all reserves to her vital organs. This was evident in her profusion. You test this by pressing on the skin to blanch it and see how quickly the colour comes back. Her blood pressure was high at times but her heart rate would dropp. This labile dance was unpredictable and most likely a consequence of brain injury. The made it difficult for the doctors and nurses to know how to adequately medicate our baby's pain. She began to not tolerate morphine as her heart rate would drop too low for comfort and so the medical team decided to with hold morphine. Our baby was paralyzed with a drug called Rock for short. At times it was evident that she was conscious under this paralytic and we hated this. We hated knowing that our baby was probably anxious and we hated not really knowing if she was experiencing pain or discomfort and was unable to show us. Usually nurses will follow the baby’s cue by either watching the numbers (such as an accelerated heart beat along with accelerated blood pressure) or by watching facial expressions…however in our case, Kaitlyn’s vital signs were not behaving predictably and she was frozen, unable to show us anything. To convey how serious her state was you have to know how she was after previous surgeries. Her heart rate and blood pressure was more stable and predictable, allowing the medical team to adequately keep her comfortable…so as much as we hated the fact that she had to have surgeries, we felt reassured that her doctors and nurses were able to read her cues and keep her comfortable.
Again I go into this much detail about her condition so you know how sick our baby was. Of course this did not make our decision any easier. We have had this conversation with doctors many, many times, too many times, throughout Kaitlyn’s life. The doctors asked if we wished to terminate when ultrasounds and tests pointed to the likelihood of a genetic defect and a congenital heart defect. This decision was easy to make. We simply held onto our values, that any life, all life is to be preserved. However, the need to confront death became increasingly difficult when we met and bonded with our daughter. Our little baby showed she had such complex health issues. Each time the doctors sat us down, too many times to count on one hand, our discussions about Kaitlyn’s long term care and prospects for life became more difficult and intense. As parents we have faced the single most difficult decision in our life. We have been asked to decide whether our daughter should or could continue to live.
After talking to Christina I understood what people had been telling me. With every good intention the medical staff had been telling me we would know when the time came to let Kaitlyn go, that she would be telling us it was time. I would just nod my head but I didn't understand. At that moment in my heart I understood what this meant.
I prostrated myself before God and prayed. In that moment I knew that true surrender was death. Is this not the case in all things? That we have to die to our natural fleshly man in order to surrender to the Holy Spirit. I surrendered Kaitlyn to God. I thanked God for allowing me to carry her in my womb and for allowing us to meet her, to hold her, to caress her head. I mourned and grieved her. After this I had a peace…throughout our journey to get to this point I truly believe we were led my God. He gave us a peace that transcends all understanding as we leaned on Him without reservation…I guess this also reminds me of a picture I had when we were praying for Kaitlyn before she was born. I saw myself on a trapeze…and God was before me, asking me to let go of the security of the trapeze bar and to leap into His arms. To trust in Him completely.
I called my mother after this…I wanted to talk to her before Kaitlyn passed away. God showed me that we can never be independent…we can never totally figure things out on our own…that God by His love and grace, places answers in the most unlikely places…that he places answers in the people that surround us. I believe my mother was the mouthpiece of God…as she told me, “Don’t cry, you have to let her come home to Me”, “ Her home, is Heaven”, “You don’t own her, you are simply a steward, that I love you so much that I entrusted her to you”, “Kaitlyn is MY beloved daughter”, “I am asking you to relinquish her to me”, “Don’t cry, I know, I know all things”, “ You are suffering more than Kaitlyn because you refuse to let go”, “Trust me”.
God’s grace has been upon us this whole time. People say Paul and I are so strong…so it’s true that when we are weak, He is strong. Who can be strong in such a time as this…it’s truly all our God. We are thankful for God’s grace, for allowing Kaitlyn to continue the good fight. We thank both God and Kaitlyn for allowing us the time to come to peace with our decision and to be liberated to make the decision. It was already decided by God but because of His mercy and love, He allowed us to find peace and freedom first.
I don’t think I can say that this is the same as facing crucifixion and all that Christ faced but I know what it’s like to face death and pray to God, “Please take this cup away, not my will but your will.”
At 3am I called to check in with our nurse, Christina, as Kaitlyn had been in a very fragile state since her surgery onTuesday when her heart stopped for 9 minutes. Overnight her heart rate had been dipping down into the 70s. Her previous surgeries showed Kaitlyn’s heart rate had been in the hundred-teens. A healthy newborn heart rate is expected to range from the 120-160. In the 60s a baby’s heart rate is considered the same as a flat line as there is not enough oomph to pump the blood around the body sufficiently. Her profusion was the worst we have ever seen it. This meant that her body was stressed and was drawing all reserves to her vital organs. This was evident in her profusion. You test this by pressing on the skin to blanch it and see how quickly the colour comes back. Her blood pressure was high at times but her heart rate would dropp. This labile dance was unpredictable and most likely a consequence of brain injury. The made it difficult for the doctors and nurses to know how to adequately medicate our baby's pain. She began to not tolerate morphine as her heart rate would drop too low for comfort and so the medical team decided to with hold morphine. Our baby was paralyzed with a drug called Rock for short. At times it was evident that she was conscious under this paralytic and we hated this. We hated knowing that our baby was probably anxious and we hated not really knowing if she was experiencing pain or discomfort and was unable to show us. Usually nurses will follow the baby’s cue by either watching the numbers (such as an accelerated heart beat along with accelerated blood pressure) or by watching facial expressions…however in our case, Kaitlyn’s vital signs were not behaving predictably and she was frozen, unable to show us anything. To convey how serious her state was you have to know how she was after previous surgeries. Her heart rate and blood pressure was more stable and predictable, allowing the medical team to adequately keep her comfortable…so as much as we hated the fact that she had to have surgeries, we felt reassured that her doctors and nurses were able to read her cues and keep her comfortable.
Again I go into this much detail about her condition so you know how sick our baby was. Of course this did not make our decision any easier. We have had this conversation with doctors many, many times, too many times, throughout Kaitlyn’s life. The doctors asked if we wished to terminate when ultrasounds and tests pointed to the likelihood of a genetic defect and a congenital heart defect. This decision was easy to make. We simply held onto our values, that any life, all life is to be preserved. However, the need to confront death became increasingly difficult when we met and bonded with our daughter. Our little baby showed she had such complex health issues. Each time the doctors sat us down, too many times to count on one hand, our discussions about Kaitlyn’s long term care and prospects for life became more difficult and intense. As parents we have faced the single most difficult decision in our life. We have been asked to decide whether our daughter should or could continue to live.
After talking to Christina I understood what people had been telling me. With every good intention the medical staff had been telling me we would know when the time came to let Kaitlyn go, that she would be telling us it was time. I would just nod my head but I didn't understand. At that moment in my heart I understood what this meant.
I prostrated myself before God and prayed. In that moment I knew that true surrender was death. Is this not the case in all things? That we have to die to our natural fleshly man in order to surrender to the Holy Spirit. I surrendered Kaitlyn to God. I thanked God for allowing me to carry her in my womb and for allowing us to meet her, to hold her, to caress her head. I mourned and grieved her. After this I had a peace…throughout our journey to get to this point I truly believe we were led my God. He gave us a peace that transcends all understanding as we leaned on Him without reservation…I guess this also reminds me of a picture I had when we were praying for Kaitlyn before she was born. I saw myself on a trapeze…and God was before me, asking me to let go of the security of the trapeze bar and to leap into His arms. To trust in Him completely.
I called my mother after this…I wanted to talk to her before Kaitlyn passed away. God showed me that we can never be independent…we can never totally figure things out on our own…that God by His love and grace, places answers in the most unlikely places…that he places answers in the people that surround us. I believe my mother was the mouthpiece of God…as she told me, “Don’t cry, you have to let her come home to Me”, “ Her home, is Heaven”, “You don’t own her, you are simply a steward, that I love you so much that I entrusted her to you”, “Kaitlyn is MY beloved daughter”, “I am asking you to relinquish her to me”, “Don’t cry, I know, I know all things”, “ You are suffering more than Kaitlyn because you refuse to let go”, “Trust me”.
God’s grace has been upon us this whole time. People say Paul and I are so strong…so it’s true that when we are weak, He is strong. Who can be strong in such a time as this…it’s truly all our God. We are thankful for God’s grace, for allowing Kaitlyn to continue the good fight. We thank both God and Kaitlyn for allowing us the time to come to peace with our decision and to be liberated to make the decision. It was already decided by God but because of His mercy and love, He allowed us to find peace and freedom first.
Peace
Kaitlyn Faith Ham went to be with our Lord Jesus Christ. Our beautiful daughter passed away on December 17, 2009 at 9.53pm. She went for a piggy back ride with Jesus and we have absolute peace she is in Heaven with her heavenly daddy. We know that God loves her MORE than we can possibly love her. We thank God for entrusting Kaitlyn to us. We hold onto the gift of having conceived her spirit. God and Kaitlyn gave us a beautiful gift in allowing us to know her, hold her and fall deeply in love with her. For those who never met Kaitlyn or got to hold our baby, we know you encountered her beautiful warrior spirit. She is brave, courageous and so strong. Her heart continued to beat for 37 minutes. Once again she surprised the doctor and nurses but then again why should we be surprised, we knew how strong she was and we knew she loved to surprise us all.
We know that Kaitlyn is at peace and because of this we have peace.
We got home at 3am this morning. As we drove away from Children's Hospital we asked if we had spent enough time with our daughter...and our answer was that it will never be enough but we are thankful for the time we had.
I woke up at 8am this morning and had so many words and thoughts in my head I had to type, type, type...I typed everything in a Word document. I will share this on our blog when I am ready.
Although many wish to send their condolences...we appreciate this and hope that you understand if we do not respond right away.
We are now preparing her memorial service to celebrate her life...this is most likely to be held on Monday or Tuesday evening...so please save the date! We are excited to share this event with you all!
We know that Kaitlyn is at peace and because of this we have peace.
We got home at 3am this morning. As we drove away from Children's Hospital we asked if we had spent enough time with our daughter...and our answer was that it will never be enough but we are thankful for the time we had.
I woke up at 8am this morning and had so many words and thoughts in my head I had to type, type, type...I typed everything in a Word document. I will share this on our blog when I am ready.
Although many wish to send their condolences...we appreciate this and hope that you understand if we do not respond right away.
We are now preparing her memorial service to celebrate her life...this is most likely to be held on Monday or Tuesday evening...so please save the date! We are excited to share this event with you all!
Wednesday, December 16, 2009
Through The Line of Fire
This is an email from my friend in Sydney and I wanted to include this testimony in Kaitlyn's blog...as Ps. Sonya says, "do it again Lord".
Hi clara, I was reading the Colour brochure that came out recently for 2010 and it gathered different women's journeys...and how they overcame challenges in His name. There was one story which i wanted share... I am sisterhood My name is natalie And this is Bella Grace's story Location: London, England Family: husband Mark, son Joshua and baby girl "Bella Grace" Reality: the moment our precious Bella was born, i knew something wasn't right. The specialists soon confirmed that Bella had been born with down syndrome. Shattered dreams: like all parents we had hopes and dreams for our little girl, dreams of what she would grow to be and experience. Suddenly we had to view her future differently. Resolve: to take hold of "God's plans" for his little girl. Those first weeks were difficult, tests and more tests, but church friends and family began surrounding us. This community of friends offered help and support, prayed that God would have His way in her life, that we would know His peace in the tormoil. Something began to happen: we took Bella home and further tests and check ups continued over the following weeks. After a while Mark commented that he thought Bella's face was changing. The miracle: one day one of the specialist phoned. They were extremely puzzled and confessed that they hadn't made this kind of mistake before, but according to their tests Bella did not have, or no longer had the condition. She was a perfectly healthy baby! Every sign of down syndrome had gone! Today: Bella is growing and responding. We are so grateful to our amazing friends and church who stood with us in faith and more so to an amazing God, who really is able to accomplish the impossible when we trust and believe. Clara, hope this story encourages u...it looks so much better in the actual brochure. Take care... And i LIKE ur long and detailed blogs! ^^ Love jul
"Life is not measured by the number of breaths we take but the number of moments that take our breath away". This is a quote that Virginia shared with me...the reason I am including all this in Kaitlyn's blog is because people have been commenting on our strength...but it's through you all that God is also strengthening us. This quote sums up how we feel about Kaitlyn.
Today we had a 2 hour intense meeting with the ICU Intensivist, Dr. Pittfield (these names may not mean anything to you but we want to remember these people's names as they have impacted us significantly during this difficult time) our nurse Linda Dart (we love her), Lori (the Ethicist), Linda (Hospital Chaplain) and the fellow...sorry she is lovely but I forgot her name. I think the way Dr Pittfield framed the purpose of this meeting was significant because it is the way that he related the medical information to us testified to his summary...to paraphrase what he said, "the purpose of the medical team and our recommendations (as difficult as it is to hear their recommendations) is to help you go through the process you need to go through to face the decisions that you are facing."
One of the biggest lessons I am learning as Kaitlyn's parents is how to advocate for her...I think this is another lesson on how to walk in the authority God has given us. It has been intimidating relating with the doctors but I'm learning that we have to use our voice to advocate for Kaitlyn who has no voice. That we have to bold and ask the hard questions...I feel that the more questions we ask, the more light we shed over this dark issue of life and death.
I would like to go back into the ICU to be with Kaitlyn...I will continue this blog later. (Clara)
Hi clara, I was reading the Colour brochure that came out recently for 2010 and it gathered different women's journeys...and how they overcame challenges in His name. There was one story which i wanted share... I am sisterhood My name is natalie And this is Bella Grace's story Location: London, England Family: husband Mark, son Joshua and baby girl "Bella Grace" Reality: the moment our precious Bella was born, i knew something wasn't right. The specialists soon confirmed that Bella had been born with down syndrome. Shattered dreams: like all parents we had hopes and dreams for our little girl, dreams of what she would grow to be and experience. Suddenly we had to view her future differently. Resolve: to take hold of "God's plans" for his little girl. Those first weeks were difficult, tests and more tests, but church friends and family began surrounding us. This community of friends offered help and support, prayed that God would have His way in her life, that we would know His peace in the tormoil. Something began to happen: we took Bella home and further tests and check ups continued over the following weeks. After a while Mark commented that he thought Bella's face was changing. The miracle: one day one of the specialist phoned. They were extremely puzzled and confessed that they hadn't made this kind of mistake before, but according to their tests Bella did not have, or no longer had the condition. She was a perfectly healthy baby! Every sign of down syndrome had gone! Today: Bella is growing and responding. We are so grateful to our amazing friends and church who stood with us in faith and more so to an amazing God, who really is able to accomplish the impossible when we trust and believe. Clara, hope this story encourages u...it looks so much better in the actual brochure. Take care... And i LIKE ur long and detailed blogs! ^^ Love jul
"Life is not measured by the number of breaths we take but the number of moments that take our breath away". This is a quote that Virginia shared with me...the reason I am including all this in Kaitlyn's blog is because people have been commenting on our strength...but it's through you all that God is also strengthening us. This quote sums up how we feel about Kaitlyn.
Today we had a 2 hour intense meeting with the ICU Intensivist, Dr. Pittfield (these names may not mean anything to you but we want to remember these people's names as they have impacted us significantly during this difficult time) our nurse Linda Dart (we love her), Lori (the Ethicist), Linda (Hospital Chaplain) and the fellow...sorry she is lovely but I forgot her name. I think the way Dr Pittfield framed the purpose of this meeting was significant because it is the way that he related the medical information to us testified to his summary...to paraphrase what he said, "the purpose of the medical team and our recommendations (as difficult as it is to hear their recommendations) is to help you go through the process you need to go through to face the decisions that you are facing."
One of the biggest lessons I am learning as Kaitlyn's parents is how to advocate for her...I think this is another lesson on how to walk in the authority God has given us. It has been intimidating relating with the doctors but I'm learning that we have to use our voice to advocate for Kaitlyn who has no voice. That we have to bold and ask the hard questions...I feel that the more questions we ask, the more light we shed over this dark issue of life and death.
I would like to go back into the ICU to be with Kaitlyn...I will continue this blog later. (Clara)
Tuesday, December 15, 2009
The Kingdom vs. The Natural
Kaitlyn had a rough night struggling with her breathing. This morning they called us as we were getting ready to go to Lauryn's preschool Christmas concert. They decided to reinterbate her and told us that she was stable enough for us to go to Lauryn's concert. Once we got to the school the doctor called again to say that Kaitlyn was deteriorating and the ENT surgeon required consent to do whatever it takes to save her.
Kaitlyn came out of surgery at about 1pm today. However, the doctor said that there were major complications. This time they had to use a lazer to cut out some scar tissue in her trachea. The ENT described her trachea as a an hour glass shape. Kaitlyn was born with a narrowing and a floppy trachea. In the narrowed area the trachea was collapsing in and out as she breathed. This caused a web of scar tissue was to form. The ENT had to remove this scar tissue cauterising as he worked...a piece of tissue fell down causing a blocked airway. Kaitlyn flatlined for 9 minutes during which they performed chest compressions, however they could not find a pulse to indicate that her heart was able to pump sufficient oxygen around her body. This means her brain may have suffered some injury. We don't know the extent of that damage. They have done an ultrasound on her brain, no significant damage has been found however some damage may not be evident except through watching her development...we're claiming the word PERFECTION still...
We decided to eat lunch and again got a call from the hospital to say that Kaitlyn was continuing to deteriorate. The doctors called us in for a meeting to discuss Kaitlyn's care in careful consideration of her recent setback and her continuing health complications.
When Kaitlyn went into surgery, once again I placed her in God's loving arms, and I felt God tell me that even when she's in our arms...that she is still in His loving arms. I think God was just stretching my vision.
Once again we find ourselves at a crossroad where our faith is stretched to the max. The doctors have given us the choice to go to the Canuck's Hospice and allow Kaitlyn to pass away in peace. The other option is to have her exterbated on Sunday and see whether she can breath on her own. Although the ENT can not predict the outcome he feels that this is can be a cycle where the scar tissue continues to form...so they are asking us when is enough enough. Both Paul and I are struggling with this decision.
The Chaplain at the hospital has been a part of all our big meetings, both today and that previous Friday when we had the big scare. She reframed things for us a little differently and said that God gives and takes breath. She also said that doctors give artificial breath. So we have to discern whether we are doing more than God...she also said that going to the Hospice can be a gift...I don't know if I agree with the latter perspective...I don't know when death is a gift...but her first perspective definitely gave me something to think about. I guess we need to discern whether this is a losing battle and whether continuing the fight is really taking control over the situation vs. my previous perspective that the decision to take her life is being in control...I'm glad that God is God because these decisions sure are hard.
Pastor Steve came by just to talk to us and support us. Clara and I have decided not to intervene again if something were to happen to Kaitlyn. Our poor little girl has gone through so much already in the past month. However, please continue to contend for full healing and restoration.
Please pray for us, we need wisdom, discernment to hear God's voice during this difficult and critical time.
U Turn
We received a call this morning from the hospital saying that Kaitlyn was having problems with her breathing during the night. They told us that they were going to re-intubate her. Then another phone call came saying that she was going to the OR. The nurse on call told us that Dr. Kozak found a lot of scar tissue in her trachea and used a lazer to clean it up. She'll be returning to the ICU with a tube down her throat. She's still in the OR ... we'll keep you updated.
Please keep Kaitlyn in your prayers
Please keep Kaitlyn in your prayers
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