I know O LORD that thy judgements are right, and that thou in faithfulness hast afflicted me. Let, I pray thee thy merciful Kindness be for my comfort, according to thy word unto thy servant. Let the tender mercies come unto me, that I may live: for thy law is my delight. Ps. 119:75-77
What a blessing all of you have been to our family! The overwhelming support of prayer, the beautiful cards and flowers, the encouraging and tender words of comfort,the delicious meals, the keepsake of gifts, the generosity of your resources and the presence of so many friends and family have flooded our hearts and lives! It is with deepest heart felt thanks to each of you. As you have said to us, mere words cannot seem to express our heart, but please feel the depth of these words, we love you and thank you!!
I have delayed sitting down to do this because all I seem to want to do is cry on peoples shoulders, cry to the Lord and cry to myself. There are moments of strength in my heart and there are moments of great heaviness that I feel so utterly in despair of missing Joel. That mommy instinct in me says a part of my heart is missing. How will life go on without him? It seems the mornings are most difficult as I seek to spend time with the Lord. Trying to pour out my heart before him, yearning and craving to hear him speak to my heart through his word. I humble myself before you and say I am struggling. I have many questions. Aches and pains so deep. My heart feels like I have left Joel somewhere and I cannot go get him. In my finite thinking I think of his 3 year age, how dependent he was on his parents for comfort, for strength in his weak body, for mommy and daddy to come to him in the night when he was in pain from the cancer, from fears. So all these thoughts hurt so incredibly, to wonder whose helping him? In my finite thinking I wonder if he is looking for his mommy and daddy and his brothers and sisters. And yet as these thoughts flood my mind, the gentle Holy Spirit wings his flight to my soul and utters peace and comfort. It takes such discipline of mind to get back upon Jehovah and know all is well with Joel, he desires nothing upon this earth, and he is beholding Jesus face to face. It is the ones that are toiling on this earth that are experiencing sorrow. I know there is hope for the future, it is just dealing with the pain of today, and as the song says "Because He Lives I can face tomorrow". There are sunshine moments, like being able to hold another 3 yr. old Josiah, to touch his little 3 yr. old hand, to dress him and be with him.
One of the hardest memories is Wednsday the 3rd of January. We went back to the hospital for his second round of chemo. Recounting each moment and trying to hug and grasp the last day of communication with Joel. Terry took some luggage up to the clinic floor and then Joel and I went up to the hospital through the clinic to the nurses station to check into his room. We got settled in our room, and shortly Audra our nurse , til shift change came in to check Joels vitals. I was holding him in a chair and as she came over and bent down in front of him he took his little hands and willingly opened his little sweat jacket. He was getting used to all the procedures the nurses had to do. Terry made it back up to the room and the nurse made preperations to access his port to begin his chemo. He layed down on the bed, he cried just a little bit and the nurse said 1,2,3, and then stuck the needle in. It was over so quickly that he did'nt cry long. They got the chemo flowing and he and I played playdo, worked in his sticker book, read some books, he watched some animals on the Moody Science videos, and I drew him a barn picture with animals with some of his crayons. Soon his nurse popped in again and she talked to Joel about the animals and he was telling her the animal sounds. He also had this special bunny that some friends had given along with a stethascope and blood pressure instruments that he and the nurse were interacting with. Audra visited in the room for quite some time talking to Terry about Africa as she wants to go and do missionary work.
Soon he ate his supper and he was offering Terry his pepperoni off his pizza. He was so happy and cheerful. Before we went back to the hospital, I had been concerned about how he would do, but he adjusted quickly to the afternoon. I don't know if I can remember exact times but around 6:00 to 6:30 he thew up his supper. I had suprised thoughts of I wonder why he is throwing up he hardly had any side effects the last chemo, but then I thought ,well this is a different dose of chemo. The other children came up about 7:00 p.m. and left about 8:30. Anna stayed at the hospital for the night. I think he threw up once or twice while they were there. After they left he watched some more animal videos and we were getting settled for the night. Around 10:00 p.m. his vomiting increased to every 20 minutes or so. I told the nurse that he was also having leg spasms. He was moving and kicking his legs, the nurse thought he might be having an allergic reaction to the nausea medicine. We had given this to him at home and he did'nt react, so once again I thought this was unusual, but we thought it was all related to his chemo treatment. His vomiting increased to about every 10 minutes. He would vomit and then fling himself back on his pillow, for a brief interval. He got to the point of dry heaves. He also seemed to have a behavorial change, he said a few thing that made us think he did'nt know where he was. Anna was on the pull out bed on the side of Joel, and I was on the hospital bed, Terry on another bed behind us. I finally sat on the edge of the bed and was holding him in my arms. I thought he was dropping off to sleep. The nurse came in and was doing somthing to his IV machine and he said, "what's that beeping?" The nurse left and he took 4 fast breaths and then his body was stretching out and pulling. I loudly said "something is not right"! Terry quickly came to the bed side and I handed Joel to him and dashed out into the hallway asking for help. Several nurses came in. Terry had layed him on the bed. He was limp and not responsive. The nurse checked his eyes and suspected he had had a seizure, Anna and I were sitting on the bed beside him with great concern. The gave him a antiseizure medication, and then within moments had another one, his hand drew up again. More antiseizure medicine was given. Checking his eyes again they thought he had another seizure and the 3rd medication was given. This time the wrong prescription and too much. It actually causes you to go comotose. His vitals dropped so they gave him oxygen. The were contacting the Dr. on call and just monitering him. They ordered a cat scan to see if they could determine why he had the seizure. At 2:00 a.m. he went down for that. Back to the room they decided to transfer him to the PICU. The time frame is blurry but we possibly got to ICU around 3:30 a.m. They soon intabated him with the ventilater. We were then able to go into his room, to see our precious Joel limp and unresponsive was most unbearable. Between 6:00 and 7:00 a.m. the Dr. on the floor gave us the report of the cat scan. He saw that a tumor around the brain had bled which caused his brain to possibly swell. As I reflected the hours before in Joel's room, the vomiting was not related to chemo but to possibly the bleeding and swelling that his brain was experiencing as well as the behavorial change. Our hearts were in such torment and grief. Thursday was a day of evaluating Joel with the tests of brain death. Friday they repeated the test because of the overdose of the wrong medication. They also did a blood flow test which results showed no blood flow to the brain. Words cannot even begin to describe the feelings we were having. Doctors and others began discussing what we wanted to do, as they had determined Joel brain dead which is legally dead based on medical criteria. Terry and I both felt as long as his blood was flowing and his heart beating, that Joel was alive. God started and formed his heart and HE is the one that determines death. At that time the tide changed with the doctors. And as you all know that all removed their care for Joel. We had some very sweet nurses that took care of him but he was only receiving status quo care. All the court happenings came forth. We were stuck in a place we did'nt want to be without any care for Joel to meet his body's needs. Once again we had to keep coming back to our Sovreign God who reigns!
The days came and went with Terry and I mostly taking care of Joel's basic needs. Soon another doctor stepped in but to only be an advocate to try to get us out and possibly home. His philosophy was no different, Joel was dead to him too. Joel fought hard and long. Our longing prayer was for God to raise him up according to his will. Through all the dark days and hours, yes we can say that God does all things well. I have not meant to make such a drama out of this Wednesday that Joel experienced but I wanted to share it with you because it helps my hurt! I'm seeking to trust and hope in the Lord, may He have mercy upon our family!
Our days at home have been challenging. The routine brings memories of course. Every turn I make brings pictures of Joel to my mind. I have been working on Joel's creative memories book that I had begun at birth and was about 7 months behind. I've caught it up til November and will begin a new book starting with December and his diagnosis. It has been special to behold his sweet face. I'm so thankful for my daughter Anna who is a picture taking Queen. We have wonderful pictures of Joel. I could not have taken what she has!
Terry has gone back to work. Last Monday was very hard for all of us, but God got us through. We still have yet to get back to our full routines but hopefully the days ahead will get smoother. The Lord has directed my heart to several scriptures that have brought peace and comfort, and Terry has brought encouragement to my heart too. Thank you for listening, I've never had this sorrow before and in the grieving process it helps to express my emotions and thoughts. I want to have a heart that continues to express to the Lord praise, rejoicing and confidence that He does all things well! With heartfelt thanks to each of you!
~Cindy
What a blessing all of you have been to our family! The overwhelming support of prayer, the beautiful cards and flowers, the encouraging and tender words of comfort,the delicious meals, the keepsake of gifts, the generosity of your resources and the presence of so many friends and family have flooded our hearts and lives! It is with deepest heart felt thanks to each of you. As you have said to us, mere words cannot seem to express our heart, but please feel the depth of these words, we love you and thank you!!
I have delayed sitting down to do this because all I seem to want to do is cry on peoples shoulders, cry to the Lord and cry to myself. There are moments of strength in my heart and there are moments of great heaviness that I feel so utterly in despair of missing Joel. That mommy instinct in me says a part of my heart is missing. How will life go on without him? It seems the mornings are most difficult as I seek to spend time with the Lord. Trying to pour out my heart before him, yearning and craving to hear him speak to my heart through his word. I humble myself before you and say I am struggling. I have many questions. Aches and pains so deep. My heart feels like I have left Joel somewhere and I cannot go get him. In my finite thinking I think of his 3 year age, how dependent he was on his parents for comfort, for strength in his weak body, for mommy and daddy to come to him in the night when he was in pain from the cancer, from fears. So all these thoughts hurt so incredibly, to wonder whose helping him? In my finite thinking I wonder if he is looking for his mommy and daddy and his brothers and sisters. And yet as these thoughts flood my mind, the gentle Holy Spirit wings his flight to my soul and utters peace and comfort. It takes such discipline of mind to get back upon Jehovah and know all is well with Joel, he desires nothing upon this earth, and he is beholding Jesus face to face. It is the ones that are toiling on this earth that are experiencing sorrow. I know there is hope for the future, it is just dealing with the pain of today, and as the song says "Because He Lives I can face tomorrow". There are sunshine moments, like being able to hold another 3 yr. old Josiah, to touch his little 3 yr. old hand, to dress him and be with him.
One of the hardest memories is Wednsday the 3rd of January. We went back to the hospital for his second round of chemo. Recounting each moment and trying to hug and grasp the last day of communication with Joel. Terry took some luggage up to the clinic floor and then Joel and I went up to the hospital through the clinic to the nurses station to check into his room. We got settled in our room, and shortly Audra our nurse , til shift change came in to check Joels vitals. I was holding him in a chair and as she came over and bent down in front of him he took his little hands and willingly opened his little sweat jacket. He was getting used to all the procedures the nurses had to do. Terry made it back up to the room and the nurse made preperations to access his port to begin his chemo. He layed down on the bed, he cried just a little bit and the nurse said 1,2,3, and then stuck the needle in. It was over so quickly that he did'nt cry long. They got the chemo flowing and he and I played playdo, worked in his sticker book, read some books, he watched some animals on the Moody Science videos, and I drew him a barn picture with animals with some of his crayons. Soon his nurse popped in again and she talked to Joel about the animals and he was telling her the animal sounds. He also had this special bunny that some friends had given along with a stethascope and blood pressure instruments that he and the nurse were interacting with. Audra visited in the room for quite some time talking to Terry about Africa as she wants to go and do missionary work.
Soon he ate his supper and he was offering Terry his pepperoni off his pizza. He was so happy and cheerful. Before we went back to the hospital, I had been concerned about how he would do, but he adjusted quickly to the afternoon. I don't know if I can remember exact times but around 6:00 to 6:30 he thew up his supper. I had suprised thoughts of I wonder why he is throwing up he hardly had any side effects the last chemo, but then I thought ,well this is a different dose of chemo. The other children came up about 7:00 p.m. and left about 8:30. Anna stayed at the hospital for the night. I think he threw up once or twice while they were there. After they left he watched some more animal videos and we were getting settled for the night. Around 10:00 p.m. his vomiting increased to every 20 minutes or so. I told the nurse that he was also having leg spasms. He was moving and kicking his legs, the nurse thought he might be having an allergic reaction to the nausea medicine. We had given this to him at home and he did'nt react, so once again I thought this was unusual, but we thought it was all related to his chemo treatment. His vomiting increased to about every 10 minutes. He would vomit and then fling himself back on his pillow, for a brief interval. He got to the point of dry heaves. He also seemed to have a behavorial change, he said a few thing that made us think he did'nt know where he was. Anna was on the pull out bed on the side of Joel, and I was on the hospital bed, Terry on another bed behind us. I finally sat on the edge of the bed and was holding him in my arms. I thought he was dropping off to sleep. The nurse came in and was doing somthing to his IV machine and he said, "what's that beeping?" The nurse left and he took 4 fast breaths and then his body was stretching out and pulling. I loudly said "something is not right"! Terry quickly came to the bed side and I handed Joel to him and dashed out into the hallway asking for help. Several nurses came in. Terry had layed him on the bed. He was limp and not responsive. The nurse checked his eyes and suspected he had had a seizure, Anna and I were sitting on the bed beside him with great concern. The gave him a antiseizure medication, and then within moments had another one, his hand drew up again. More antiseizure medicine was given. Checking his eyes again they thought he had another seizure and the 3rd medication was given. This time the wrong prescription and too much. It actually causes you to go comotose. His vitals dropped so they gave him oxygen. The were contacting the Dr. on call and just monitering him. They ordered a cat scan to see if they could determine why he had the seizure. At 2:00 a.m. he went down for that. Back to the room they decided to transfer him to the PICU. The time frame is blurry but we possibly got to ICU around 3:30 a.m. They soon intabated him with the ventilater. We were then able to go into his room, to see our precious Joel limp and unresponsive was most unbearable. Between 6:00 and 7:00 a.m. the Dr. on the floor gave us the report of the cat scan. He saw that a tumor around the brain had bled which caused his brain to possibly swell. As I reflected the hours before in Joel's room, the vomiting was not related to chemo but to possibly the bleeding and swelling that his brain was experiencing as well as the behavorial change. Our hearts were in such torment and grief. Thursday was a day of evaluating Joel with the tests of brain death. Friday they repeated the test because of the overdose of the wrong medication. They also did a blood flow test which results showed no blood flow to the brain. Words cannot even begin to describe the feelings we were having. Doctors and others began discussing what we wanted to do, as they had determined Joel brain dead which is legally dead based on medical criteria. Terry and I both felt as long as his blood was flowing and his heart beating, that Joel was alive. God started and formed his heart and HE is the one that determines death. At that time the tide changed with the doctors. And as you all know that all removed their care for Joel. We had some very sweet nurses that took care of him but he was only receiving status quo care. All the court happenings came forth. We were stuck in a place we did'nt want to be without any care for Joel to meet his body's needs. Once again we had to keep coming back to our Sovreign God who reigns!
The days came and went with Terry and I mostly taking care of Joel's basic needs. Soon another doctor stepped in but to only be an advocate to try to get us out and possibly home. His philosophy was no different, Joel was dead to him too. Joel fought hard and long. Our longing prayer was for God to raise him up according to his will. Through all the dark days and hours, yes we can say that God does all things well. I have not meant to make such a drama out of this Wednesday that Joel experienced but I wanted to share it with you because it helps my hurt! I'm seeking to trust and hope in the Lord, may He have mercy upon our family!
Our days at home have been challenging. The routine brings memories of course. Every turn I make brings pictures of Joel to my mind. I have been working on Joel's creative memories book that I had begun at birth and was about 7 months behind. I've caught it up til November and will begin a new book starting with December and his diagnosis. It has been special to behold his sweet face. I'm so thankful for my daughter Anna who is a picture taking Queen. We have wonderful pictures of Joel. I could not have taken what she has!
Terry has gone back to work. Last Monday was very hard for all of us, but God got us through. We still have yet to get back to our full routines but hopefully the days ahead will get smoother. The Lord has directed my heart to several scriptures that have brought peace and comfort, and Terry has brought encouragement to my heart too. Thank you for listening, I've never had this sorrow before and in the grieving process it helps to express my emotions and thoughts. I want to have a heart that continues to express to the Lord praise, rejoicing and confidence that He does all things well! With heartfelt thanks to each of you!
~Cindy
10 comments:
Thank you for sharing so openly, I too am a mommy of a three year old boy, and can completely understand your heart for him and can imagine what pain you must be going through. I keep thinking too of your little Josiah and how it must be so hard for him, I'm sure he's just really missing his buddy.
We will continue to pray for each of you as you seek the Lord's comforting arms, and for your littlest ones as they grieve and learn to lean on the strong arms of our Lord and Saviour, bless you.
Words are inadequate but please know that we grieve with you, even though we have never met you. I could not get through your post, I cried so much. I promise to keep praying for you. Isaiah 40:11 "He will feed His flock like a shepherd: He will gather the lambs in His arm, He will carry them in His bosom and will gently lead those that have their young." May the Lord's gentleness lead you today and in the coming weeks and months.
Love,
Julie-Anne M. in Northern Canada
Cindy,
I am a member of the church where Tami and Jerry Clark belong. I have been following the posts from day one, and praying for you often. My mom died from cancer 3 1/2 years ago when she was only 60, and it was very hard to imagine her as anything but how I knew her in her finite presence. I am a mother also, and at the time of my mother's death, I wondered if my child had passed, would they be looking for me? How could I handle not knowing if he or she needed comfort, etc.? I had those mommy feelings you spoke of, due to my own mother's death. I feel for you. One thing that helped me was a poem my aunt gave us that we used on my mom's funeral program. I'll have to find it and send it to you. It describes "us" in our realm viewing our loved one as a ship setting sail from port toward the horizon, and the heaviness we feel. But on the other side of that horizon are our Christian brothers and sisters who have gone before us. Jesus is standing before them with open arms, watching a ship come in to port and shouting, "Here she comes!" This has helped me tremendously when I miss my mom. I know when Joel saw the Lord, He was shouting with joy, "Here he comes!" Your precious little boy is greatly missed here, and has been greatly welcomed in heaven. I know you realize this, but I just felt a need to relate this to you.
Dearest Cindy, I've been following Joel's Journey from mid December. Thanking you for sharing what happened and for sharing your heart. I can only imagine your aching heart and soul -- that you had to give Joel to the Lord so very early. Please know that Joel and his story (and his family's) has been such a huge blessing and has had such a huge impact on so many lives. What he (and his family) has taught me is constantly invading my thoughts with the Lord prompting me about the changes I need to make in my life. You have my deepest sympathy and sorrow, I think all of the blog readers could not help but fall in love with precious Joel. I know I did! I WILL continue to pray that the Lord touches your heart and eases the pain ... and restores your joy!! Imagine him with the Saviour and what a glorious time he is having! Love and prayers, Michelle Kansas
Thank you so much for sharing your feelings here. I too have lost a son so I can totally relate. We experienced a little boy that was active earlier in the day but by the nightime, he was in the PICU on a ventilator...so I understand how you look back on that day when you last had obvious "contact" with Joel. I'm so sorry that you have to feel this pain for I know at times it is unbearable...but I'm thankful too that you know the Lord and know that He is our Comforter. Keep on writing, keep on thinking about Joel and keep on leaning on the Lord!
Thank you for allowing us to pray for your family during this difficult time.
Cindy, thank you for sharing this with us. Again words seem so inadequate. I am thankful it helps for you to share. We are here to lift you up and to share these moments with you. It is a privelege to witness the faith that you and Terry have had through this whole journey.
I too, have a 3 yr old. I can not imagine... I think of you so often... and lift a prayer for you. My heart hurts with you and for all of you. I too, think of Josiah. Of all of them. We have a son in college and Mandi is 18 and so forth.... each one loves our little Wes.... and I know that all of you are hurting.
I appreciate you taking the time to blog about Joel.
May God comfort you as more and more people read Joel's Journey and lift you up to the Father.
I will continue to pray~
in Him,
Teena mom to 1/2 dozen
Cindy,
May God uphold you in such a way that only He can do! You are so strong and full of grace and such an inspiration to us all. God is with you and you are such a vessel for Him.
Thank you so much for sharing your mother's heart with us. I long for the words to say but they just aren't there. Nothing but God can speak to your heart and bring this forever peace. Let Him carry you.
Stay under God's wing and He will prevail in, with and through you! You are in my prayers.
Hugs from Arkansas,
Leslie
I am so terribly sorry for your loss.......
My children talk about Joel and about heaven... they look at his picture on my blog and wonder what he was like... My 6 year old daughter's friend died this past year in an accident -- my kids talk about how the two little ones are with Jesus.....
Our hearts are broken for you. We will continue to hold your family up in prayer.
In Him, Beckie
We are praying, Cindy, for you and Terry and your whole family.
We are actually in the process of writing our wills and nominating guardians for our Lisa and (hopefully) future children, and one of the drafted documents our lawyer sent was the living will-type thing. We emailed him today about some language that's in there about the doctors making decisions in certain situations. We want the decisions to remain in the hands of our family, who will be in prayer before the Lord as to what would be best at that time.
Your hard, hard situation with Joel's care has really made us scrutinize these documents and not take the standard legalese for granted.
We just ache for you. May the Lord ease your hearts.
Love in Christ,
Ken, Debbie & Lisa May Fields
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