I have no idea how to put it into better words, but on Monday morning Scooby began the process of dying. He changed very quickly overnight and we are working very hard on keeping him stable and comfortable. I don’t want to go into details of what it’s like to watch – I’m sure you could imagine and probably don’t want to. The blessing is that the shaking that has plagued him for so long is gone – his muscles are completely rested.
He’s had a few moments each day where he’s communicated with us a little bit, and a few moments each day when we thought it was all over and then he’s restabilised again. He is living up to his nickname of Tenacious D but we have reminded him that he doesn’t have to. He can go whenever he feels he is ready.
Waiting is the worst agony we’ve ever known. One minute there is peace, the next there is fear, then there is hope. There is a lot of weariness mixed in with a huge amount of adrenaline – everytime his sats dip or I think about what the end will look like, this surge goes through my body – plus a million thoughts about the past, present and future, which all means it is impossible to sleep.
Richard and I are both here, thanks to the amazing support of family in Preston who are looking after the others. It’s hard being away from them and not knowing how long this will take, but they are being very well looked after. On Monday we sat with the two older boys and explained to them what was going to happen. We’d told them a couple of weeks ago that the doctors thought their brother was not going to get better, but we realised later that what they had heard from that was that he was going to stay the same. Explaining to them this time, over hot chocolate in the hospital canteen, what it actually meant was heartbreaking.
We still have the hope that the One who is Lord of Life and Defeater of Death will step in. I have given Him approximately one gazillion reasons why it would be a really great idea, but I’m still standing on faith for Him to make the right decision. This involves a lot of ignoring how I feel and a lot of looking upwards. It hurts, but you already know that.
I have walked the path you are walking and it is indescribable. I know that this is a silly thing to say (because I know you must do this a million times a day) just keep telling him how much you love him. Just 'drink him in' if that makes any sense at all. I am struggling and stumbling over my words....trying, as always, to find the right ones, and failing miserably. Me and my family are here for all of you whenever you need us. Much love to all of you and please kiss Daniel from me xxxxxx Love Shabbs xxxReplyDelete
I don't dream normally, but last night I dreamed and you were there. I am praying for you.ReplyDelete
"Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled:
“Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?”
Just want to say how much we love you and how much Daniel's life has taught us. He has made us literally being closer to our Redeemer, in prayer and supplication. We continue praying and trusting in God. Receive new strength in Him. Carlos and Deinis
I'm praying for you all.ReplyDelete
Esther we continue to pray for you all, you are in our hearts and on our minds, but just now right this minute we pray for you xReplyDelete
This blog just sums up what an inspiration person you are, Esther.ReplyDelete
Praying for you all.
Praying, may God be with you.ReplyDelete
Praying for you all xxxReplyDelete
I opened my 'Streams in the desert' book today and the first words on the page were 'Do not be afraid Daniel'. The Lord will give you peace that surpasses all understanding. Much love and prayers. Lisa.xxReplyDelete
Continuous prayers... Psalm 86 every hour on the hour. Sending HUGS and PRAYERS. ~Dominique ScaliciReplyDelete
I continue to ask God for His inestimable favour on Daniel's life xxxReplyDelete
praying for you and your precious family xReplyDelete
May you will know comfort in Gods grace and peace in the knowledge of the eternal certainties a life with him holds.ReplyDelete
Hi, just wanted to say I was really moved by this. Praying for you all at this time that you may know God's close presence and peace. God bless you xxReplyDelete
May God bless your whole family and keep you all strong in this dark time. I don't know you personally but can see you're very close to God and that is the best thing you all can do. Whatever happens, God has blessed you with many years with your beautiful son and He will never stop blessing you. I will keep on praying. From a friend of a friend of yours xReplyDelete
Praying for peace and strength for you all!ReplyDelete
you know me well but I am no longer in your life... I have held D. in my arms and stroked his gorgeous face and feet to sleep many moons ago. I have followed his story and yours as well and sit here with tears down my face, you know my heart and you know it breaks with your and all your families. I love you all always. xxxReplyDelete
praying for you all Sarah x x xReplyDelete
Love to Daniel and all his beautiful family, be pain free little warrior xxReplyDelete
Praying for you all xxReplyDelete
Lifting you up to Jesus for him to wrap His loving arms around you all and give you and Daniel His peace xxReplyDelete
A reply to an online prayer request:ReplyDelete
''Lord we pray for Daniel your beloved child, may he be flled with your peace, and everlasting love. Amen''
dont let what you are experiencing test your faith hun god's plan is god's plan......he blessed you with an amazing gift he's one of the lucky ones chosen to walk with god very soon........he's going to leave a harsh world to be in paradise with jesus :) i pray that god makes this time easier for youReplyDelete
I will pray for your family & Gods will. I pray for a blessed peace to help you through this trying time. Continue to rely on our Lord & Savior & He will hear your & our prayers. God bless you & yours.ReplyDelete
You are all in my prayers. Keep strong.ReplyDelete
You have been constantly in my thoughts and prayers this week. Praying for the tangible presence of God with you. In Christ,ReplyDelete
Esther Picazo Heneise
You're not alone you're in the fathers hands. Praying for all of you God bless Keith and family.ReplyDelete
Praying for you all, may you know his peace and his comfort now and alwaysReplyDelete
Please sing God's praises by Daniels bedside ( I will pray that He will give you the strength ) " The Lord inhabits the praises of His people :) " With His presence comes power, miracle-working power,resurrection power !! " Come with your healing power to Daniel today , LOrd. We trust in Your love for him "ReplyDelete
Praying for you all, may you know your heavenly Fathers arms around you. xReplyDelete
I too have walked this road- our youngest child went to be with the Lord last October. Be strong. I hope and pray God heals your son but if that does not happen that you will know the comfort only He can give. Hold on to God.ReplyDelete
Praying for you all! You are all on more peoples minds than you can Imagine Possible Hold On To God He Is Your strengthand refuge!ReplyDelete
Thank you for sharing! I have read the whole story about Scooby and the rest of the family. It touched my heart and I am praying for you. We have a daughter with severe seizures and I recognise some of the things you are describing. With love from a Swedish sister.ReplyDelete
your story with your son has moved me to tears on many occasions. as a mother i feel heart broken for you but at the same time i am amazed at your strength. you are not alone in your journey. you have your family and close friends but there are also so many of us that are with with in our thoughts and pray. and above and around all of us is our heavenly father. he is the one that is carrying you through this. he loves you so much and is with your son, Daniel. i pray for peace for you all and may GOD bless you you in your unfaltering faith xxxReplyDelete
We are all praying for you at Stanley Road and admire your strength and your faith. GenaReplyDelete
Words are so inadequate at a time like this, but like Hur and Aaron with Moses, I am just one of many arms holding you all up in prayer. xx xxReplyDelete
I love you. But you already know that.ReplyDelete
So honoured to be able to pray for you.ReplyDelete