The last few weeks Caleb has been sleeping more and more. He would sleep 12-14 hours at night and then take a 4-5 hour nap. I would usually have to wake him up from his nap to make sure he would go down at night, so who knows how long he actually would have slept. I told Jason just a few weeks ago I felt like he was slipping away.
Last week when he would wake up his lips were sometimes very pale and he looked "checked out" for a while after he woke up. Caleb didn't talk but he was SO communicative with his eyes. He could say a million things with the way he looked at you. (can I just say I hate talking about him in passed tense?) Anyway, there were little things that were changing with him and as much as I didn't want to see what was coming, I now know. However, as I begin to process all this I am confident that God kept me from really seeing or believing what was going on. I had too many things to do during the day taking care of all the kids and all of Caleb's needs to be a basket case. All of my family knew at different times that he didn't have much longer and I think it was God's mercy that He let us know when He knew we could handle it.
He also started throwing up again last Tuesday. He threw up once a day until Friday when it was multiple times. We changed his diet to a much calmer blend and I think that helped but we knew something was going on. (again, I didn't really think about what it meant, I just hated to see him throwing up)
Sunday at noon he stopped breathing and turned blue. He got very limp (more than usual) and his eyes checked out, but after about 30 seconds he started to breathe again. I think it happened again just a few minutes later but my mind is kinda foggy. Jason and I decided to take him to the hospital, so we ran around and got a few things together. I came down the stairs and Jason had him in his hands and said, call 911, he is doing it again. It lasted about 30 seconds again.
The ambulance arrived and we met them at the street. When they hooked him up his oxygen levels were at 70. They are normally at 100. They came back up, but they took him to Lewisville Medical Center. Long story short- they intubated him and transferred him to Children's Hospital in Dallas. He stabilized and Sunday evening and night were pretty uneventful. They had to keep him sedated because the tube is so crazy. On Monday they decided to do an MRI since he was already intubated, so not much happened most of that day. Tuesday morning he had his MRI and came back just fine. He had been breathing on his own since Monday morning so they decided to extubate. I hadn't expected ANY problems since he was breathing on his own and he had never had any problems before. Well that's not what happend. He was wheezing and trying so hard with every breath after they took out the tube. They tried 3 or 4 different things and none of them seemed to help. The Dr. came in and was telling us that they needed to know what we wanted to do. If they intubated him again it would probably have to stay in, which would mean a trach, so he would need surgery. I asked if there was any other options and they said they could put something a little stronger than just oxygen in his nose (canula) and give him a mild sedative to see if that would calm him down where he could breathe better.
It seemed to help and he eventually he even slept some! We thought we were in the clear. I figured everything was just swollen and needed some time to go back to normal. The next morning the Dr. showed us the MRI results. We knew that the dead spots had grown, he had lost all gross motor ability so that was no surprise. But I asked, what about the part of the brain that controls the breathing? She said that had not been effected, but a big part RIGHT above it had a big spot of dead cells. We knew this was really bad. But, I thought maybe we had a few weeks or a month before we would lose him.
I left to go to breakfast and Jason texted me and told me to get back to the room. He stopped breathing again and this time his heartbeat went WAY down too. By the time I got back, he had started breathing again but the nurse told us at that point that we had some hard decisions to make. If it happened again they would have to intubate. If it was too swollen to get the tube down they would have to do an emergency trach. If his heart stopped they would have to shock him and she said it is VERY painful. About this time Caleb's heart started having arrhythmias. I knew at that moment that we would not be taking Caleb home with us. I knew that even if we tried all of the invasive medical procedures, Caleb's body was going to give up very soon. He was telling us that he was ready to go.
We didn't want our little boy's last moments to be filled with Dr.'s, and emergency procedures, pain, scary things, and not being with him, and family not being able to say goodbye. He was telling us that his body was giving up on him and we had the choice to let him go peacefully, or to try and keep him here because we wanted him here. But Jason and I decided that we would rather hurt, and to say goodbye to our little man rather than have him hurt just to stay around a little while longer. Caleb wasn't happy at the hospital. They were taking blood and waking him up for deep suctioning and all sorts of stupid things. He wasn't sleeping, he wasn't smiling, he wasn't himself.
Caleb had a wonderful life. It wasn't spent in hospitals and having tests done. (mind you we had plenty of Dr. appointments over this last year!) But he was so happy and touched everyone he came in contact with. That's how I wanted him to remember his life and that's how I wanted to remember him.
We alerted family and everyone came. Each person got to say goodbye in their own special way. We had a few hours with him before he passed and it was so absolutely amazing. We hugged him and kissed him, talked to him, and stroked his hair. We cried, and cried. Allison got to be there, and the Child Life Specialist helped talk to her and take her out of the room when she wanted. She was only in there a few times, for just a few minutes at a time, but I'm so glad she got to say goodbye to her brother. We didn't have to unplug anything, but he soon started to slip away.
I couldn't believe it was happening but had/have no regrets about the decisions we made. We wanted the most loving thing for our sweet boy and we felt that was what we were supposed to do. God gave us so much grace and mercy. He helped us do what we needed to for our precious son.
The outpouring of love and support has been absolutely astounding to us. All the people praying for us the whole time in the hospital, all the texts, and calls, and facebook posts. We are in awe. I can't tell you how much we need all those and are so blessed by each and every person that has contacted us. We love you all and even though we haven't responded to every thing please know we cherish it all.
I don't know how to do life without my Caleb. I don't really want to do life with out him. But, I will. I'm not looking forward to saying goodbye again on Monday. But, I will. It will be the last time on this earth that I will see him.
We prayed for his healing from the moment we got his diagnosis. And while we really wanted to see it happen, Caleb still got his healing, just not in this life. But now he is completely whole. He can go be a boy! All the things he couldn't do here, he can now do. We are so happy for him, but will always be left with a huge hole in our hearts.
Visitation for Caleb will be at Dalton & Son Funeral Home on Sunday evening from 5-8pm. The address is 1550 N Stemons Frwy, Lewisville Tx
The Service will be at Gateway Church on Monday morning at 10am. The address is 700 Blessed Way Southlake, TX 76092
We are asking everyone to wear something green to the service to honor Caleb's journey with Mitochondrial Disease
Love,
Jessica
29 comments:
You are the most brave courageous momma I have ever known. EVER. You have so many people lifting your family up in prayer. Your story will touch millions ... and I'm one of the million.
Love you,
Amy Ford
I don't know you but saw your story through a post on facebook. I was in tears as I read. What a wonderful decision you made for your son. Thank you for sharing your story. I am praying for your family.
OH Jessic, I am so incredibly sorry for your family's loss. I am praying for strength and peace. May God wrap his arms around you and love on you...
I am sorry that this happened to your family and I know there is no words to help comfort you at this time. I do not know you, but when I read your story I was balling as if I knew him. He is watching over you and your family and forever an angel in your hearts! God Bless you all.
10 surritol
Though I can't be there on Monday I'll be wearing green and praying for your family. You are an amazing mama, Jessica. I am so sorry for your loss.
I am a friend of Amanda Calfee. she had asked me to start praying for you guys on Sunday. Since then, I have been keeping up with FB and thinking about your family. I can not express how sad my heart is for you but how sure I am that Caleb is now so joyful in his new life. Seek comfort in the Lord. I will be praying for you on Monday as well. <3
I am so sorry. I also am deeply touched by your deep love for your son that you would not want him to suffer. You are in my thoughts.
My heart is broken for your family and what you are having to endure right now. We serve an awesome God and I pray He brings you peace during this time and in the future. Your family is in my prayers. Your strength speaks volumes...I can't imagine writing the post you wrote so soon after losing your precious son, but you are such an example. I don't even know your family personally and I was so touched by your story. May God's love surround you.
I have gotten to know Caleb through your Dad. He is an amazing little guy. I was at CFNI when your dad was the worship leader. We have been praying for Caleb and your family. I am so sorry for your loss. You both are such loving and couragous parents, you gave him so much love, I will continue to pray for you all. May the Peace of God be with you and comfort you during this time and each day. One day at a time with Jesus by yourside, holding your hand and heart. Wipeing your tears. Giving you hope.
May God's blessings be upon you.
Hugs and prayers always,
Carolyn Fenton <3
I am so glad you had such peace in what must truly be an agonizing time. I know I would be a wreck if I lost my 3yo DD. I wanted to let you know I am still praying for you and your family as you walk through this grief. I know that the Comforter will be with you as you go through this. Matt 5:4
Jessica, this is an inspiring testimony of faith! May God bless you with all the comfort and healing you need. I don't know your family personally, but I will be praying for you all. I am so sorry for your loss - what a blessing that it was a peaceful passing. You are being upheld by many, many prayers!
All of us at T2 are praying for your family. Your story is inspiring. May God give you peace and wonderful visions of your sweet boy embracing his boyhood, whole.
Amy
I'm a friend of Hannah Tallo and I responded to a prayer request you had for your son.
I've danced at the door of death with my own son. My Evan was born with another rare syndrome called Heterotaxy. His heart has numerous defects and he's already undergone 2 heart surgeries...and will undergo another one. We face many cleft lip and palate surgeries in the future as well.
There was a point when the doctor's came in and said...'your son is very sick." I knew when those words were spoken...something was wrong. But, Evan battled through...and he is thriving now despite the statistics.
I can't say I understand what you are going through since we didn't meet death like I thought we would. But, I understand what it feels like to be the parent of a miracle child with such a special, unique disease...one that has no answers...one that must be prayed over and put solely in the hands of God.
I pray for peace to transcend above all understanding as you lay your Caleb to rest. He is now healed and whole...just like you said.
Praying for your sweet family! I was blessed to have met Caleb through Gateway's Childcare Ministry. He touched my heart in so many ways, but my absolute favorite was when he said "I love you!" he said it as I was checking him out one day after Pink Groups. I was so shocked and Jessica had to translate for me, but he said it! He is the only child that ever said I love you during my time working with the babies. PTL that he is healed!
Blessings to you all,
Keri Langford
I saw this through a friends post on email. I was in tears and just about sobbing when I told my husband . Your story is heart wrenching but also a reminder ... Reminding me of what's really important. This story will touch millions in many different ways ... God will speak to each person. You. Are. Strong. Caleb is so blessed to have you as his mommy. Thank you for sharing your story and I'm sorry for your loss, but also thankful that he is whole again, fully healed, dancing with God.
In His grace and mercy,
Tamara
Jessica, there hasn't been a day gone by in the last week that I haven't thought or prayed for you all. I am overcome with grief for you and your family, but hopeful in the salvation of our Savior. I have been truly humbled by witnessing you walk this journey with Caleb... From the beginning until now. Your faith is astounding, though I know is being tried. My heart just aches for your loss and I literally tremble at knowing what you have had to go through.... But am confident that the Lord will be so near in this time. Praise Him that our absence in the body is prescence with Lord, fully whole, for those that trust in Him. I will be praying for you all in the coming days... And am so grateful you have our Jesus to cling to in the midst of saying goodbye to your precious baby.
I wish there was something I could say or do to take the pain of his loss away. I never met you or Caleb but your family and dear Caleb have been on my mind constantly since Tina texted us her urgent prayer request. My prayers to God are that he surrounds you in His Infinite Mercy. The lyrics to "Homesick" and "Held" keep coming to mind every time I think of your family. I've said it before and I'll say it again...Caleb's life and his passing touched my heart. I will continue to pray for your family during this sad time. God Bless You!
Hi Jessica. I am a Brazilian friend of Tricia McWhorter and read your story as she was asking us to pray for Caleb, which I did as much as I could this past week. As a mother of a four-year-old boy, I understand the days you are going through are a family´s worst nightmare. But the strength you show - both in your words and actions as Caleb was preparing to rest -, in addition to your faith in God, is the proof that your family will recover and be happy again. Please know that people all over the world admire your approach to life - here and above, and are praying for God to comfort you. Caleb´s story touched the hearts of many. And I am this cheers you up! Priscila
My brother Scott passed away from Mito on Sept 19th 1985, he was 12 and I was just turning 9 the next day. Im sorry you had to go through what my family went through as well. My mom and I just recently biked 4400 kms to raise money and awareness for mito, "Scotts Ride", and i felt compelled to write you, so very sorry for your loss, hugs and prayers.
My heart just goes out to you and your family and all that you have recently gone through. Please know that you are in our prayers. I hope your son, now in heaven, can still touch your heart and take away some of the pain you are going through. We deal with mitochondrial disease too. There are just too many of us. God bless you! <3 Love pouring over you, The Bunce Family!
Sending my condolences and prayers for your family. May you be surrounded by love and support and feel His grace during this painful time. ♥
Jessica I have never met you but have heard so many wonderful things about you and your family through the woman's lifegroup. I was so happy to add you as a friend when I first joined this year. When I added you on FB I never thought I would be writing to tell you how sorry I am and that there are not words that I could give you to take away your pain, but I do know I can pray for peace for you and your family. I know Caleb is now playing and running and doing the many things he has not been able to do for quite some time. I know I don't have to tell you that...I am sure that's how you find comfort. In his short time of life he and your family has made such an impact on so many people. His smile just makes me smile. I wish I could have met him, but through you I feel I already knew him. Thank you for posting your story and I pray that I will meet you in person so I can just give you a big hug!
Melissa Rooks
Mrs. Jacobs, I know you probably don't remember me, but you were my geometry teacher in high school.
From the moment we met, I knew God cherished you and your family and even blessed you with little Caleb, which was exciting news for all your students, and of course, especially you and your family.
I know Caleb's time on Earth was very short, but I'm sure that he felt happy and lucky to have you for a mother and to have everyone love him and that's more than anyone could ever hope for in life. Loving family, friends, and the experience of living every moment in happiness.
If anything, he returned to his Father in Heaven because God missed him so. Caleb left his mark on the world just by being loved and that's something to be joyous about. I can't even begin to imagine the pain you and your family must feel but I'm sure in one thing: the brave little boy everyone loved surely wishes you to cherish the times you had and not to be sad because he's not really gone. He lives forever, just in a different place now.
I'm terribly sorry for your loss and I pray for you and your family and I know God is constantly watching over you guys. Please never forget that.
My deepest condolences,
Your former student, Sylvia Yi.
I pray for God's peace and blessings upon you and your family.
My sincerest condolences,
Cheryl R
Jessica,
We don't know each other, I am a friend of Amy Torres and she has shared your story with me. Your loss has touched my heart in such a profound way. You inspire me. The love, strength, grace and faith you have is to be admired. I will continue to lift you and your family up in prayer and may Caleb's sweet smile shine down upon you today and always.
God bless you,
Mandy
Thinking and praying for your family today. God Bless you.
I loved the time I got to spend with your son in busy bee room. He did say tons with his eyes. My favorite time with him was lunch. He was a great communicator during lunch time. He also let me know when it was time to play! I havent worked in childrens for some months now, but it took my breath away when I found out. Im sorry he isnt with us but I look forward to seein those eyes again and that sweet smile. Love Miss Connie <3
May God bless and keep you a you go thru this time. I cannot tell you how I was touched by your strength and amazing courage for him. Truly awesome parents ..thank you for being that ..
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