2 Cor 12v9

Saturday, 26 May 2012

Never Alone

The most unnerving thing for Richard and I since Monday has been that we are together without Scooby. So much of the last several months has been spent apart, but when we weren’t with Scooby, we knew that the other one was.




The boy has never been alone – never without another family member by his side. As a twin, he came into this world with instant companionship, and he and Ace, and usually Turtle (who called Scooby his best friend) too, went through every life experience together – nursery, preschool, school, trampolining club, etc – until he first went into hospital aged six years and four months. Then the dynamic changed – as Ace learned to manage without his birth buddy by his side, Scooby got used to always having a parent with him as an inpatient and an outpatient in hospital. When his seizures started, around his seventh birthday, Scooby was no longer able to join Ace for ‘normal’ activities like school trips or swimming lessons. I had to accompany him, with a baby and toddler in tow, for any extra-curricular activities and watch him like a hawk, and eventually as his abilities depleted, his world shrank to consisting of home and hospital. Since his eighth birthday, he was unable to do anything for himself at all, and was extremely unstable, so Richard or I were constantly by his side. We got used to doing nothing together and settled for just handing over batons to each other. If we weren’t with Scooby, that meant that the other one was. We were either on high alert with him, or looking after the other four at home. Setting the table for five instead of seven was fine, because that meant the other parent was with him.

So the first time we set the table for six this week was incredibly hard. Looking at each other at home and knowing that meant neither of us was with him felt so wrong. Allowing him to make the biggest journey of his life, from here to eternity, has gone against every instinct that has been in us since his birth.

Although it wasn’t an easy transition, we have turned our world upside down in order to take care of our extremely disabled child. We have sacrificed normality for the hope of keeping him alive and saving him from this terrible disease. We chose to close many doors and make our world smaller, so that we would have the privilege of being his carers, for as long as he needed us to be. I never thought that pushing a eight year old child around in a wheelchair, cleaning his skin daily, changing his nappies, feeding him, willing him to speak and respond, and throwing our arms around his shaky body many times a day until his seizures passed, would feel like a privilege, but it really and honestly was. Until the last week, when he couldn’t communicate at all, he never stopped being the Scooby that we knew and loved. And so no chore, from cleaning and bandaging his blistered skin, to enduring many many interrupted nights, was not worth being with him. Not because we are saints, nor because he was one (some mornings he had a lot of apologising to do after being ratty in the night), but because we got the chance to experience a love that goes way beyond squeamishness or inconvenience, and we knew it was more than worth it.

In one morning, we have our marriage and our future back, and our very tiny world has been thrown wide open again. This is about as unnerving as an agoraphobic stepping out of a caravan and onto a gigantic festival field. I would go back in a second if it was an option. I have no idea how to make decisions about the future ever again. There are too many options, too much space, too high a price to pay for our freedom. Without knowing God is the author of all things and that this is all part of a higher plan, I don’t know how we would move forward.

But Scooby will never ever be alone. Scooby has gone on, to the Parent who loves him more completely and faithfully than Richard or I ever could. God’s arms are stronger, His abilities greater, and His comfort far more amazing that what we have had the chance to offer our boy. His life now is completely fulfilled. I cannot imagine Scooby without his two brothers eitherside of him while he runs and laughs and becomes all he was destined to be. But I know the truth of the Word, and that is what I will stand on.

In time, Richard and I will stop feeling guilty that we are sitting next to each other in the car, and sleeping next to each other in the bed. We will stop watching the other children like hawks and being paranoid about their nightly breathing patterns, fluid intake and infection risks. Our adrenaline levels will settle again, and we will stop living life on high alert all the time. We will stop viewing life from one hospital trip to another.

Because we are not alone either. Although we cannot yet see Him face to face, we can still know the God of all comfort, and the Prince of peace. We can trust in His plans when we have none. There is purpose and a future in all of this. We are, and will be forever, never alone.

13 comments:

  1. I want to write so much...I want to keep talking over and over again until I make you yawn with boredom. When my beautiful twin boy, Gareth, died I knew that he had done what he had to do on this Earth..then my third son came along....Matthew John was the name we had chosen for him. He soon became Matty. We had no idea what path was chosen for him but we loved him so much that it didnt matter. Just before his 8th birthday he was allowed to play on the quiet street we lived on, he had a cowboy belt around his waist and rode his bike with pride...that day he was killed by a reversing lorry.I struggle to find the words that describe our desolation. Many years passed and each and every day described YOUR Daniel...I wish you all so much peace, I wish you joy...and I want you all to know how much my family love your family..love Shabbs xx

    ReplyDelete
  2. My heart hurts so much. Thank you for never ever being selfish with your children, even during the hardest times when you could so easily have closed the door and not allowed anyone else to drink in one ounce of them but saved them all for yourself. No matter how much you think you know it, you will never be able to fathom how much I love them.

    ReplyDelete
  3. By God's grace I have never lost a child, but I do know from past experience that trying to build a whole new life can be totally overwhelming and at times feel like you are drowning. Leaving you with PS 121 and Habb 3:19. Praying for Hind's feet in these rocky places and Daddy's loving Arms around you all always. in my heart, my thoughts and my prayers xx xx

    ReplyDelete
  4. Thanks for being so honest Esther - it is so helpful to so many people.

    ReplyDelete
  5. Thank you for letting us into your "tiny world" and God Bless and Keep you as you enter the wide open world again at the right time for you as a family!

    ReplyDelete
  6. My prayers are with you, as your world opens so does Scooby's, the good news is none are alone...

    ReplyDelete
  7. I dont know you guys but read your blog through our good friend but I just felt compelled to write to you. My husband and I were brought to tears reading your words and I cannot comprehend the pain and loss you must be feeling. Sorry is not a big enough word. It was a truely humbling read and your faith and strength, truely inspirational. We will be praying for you all at this time.

    ReplyDelete
  8. When our children are born there is nothing we wouldn't do for them. Take any pain and suffering and walk any road with them. This is one road that Daniel is taking without you but instead is walking hand in hand with his heavenly father and the beauty is that this heavenly father is also walking hand in hand with you and Richard on the journey ahead.

    Much love to you, Rachel W x

    ReplyDelete
  9. My God hold you and your family in His loving arms and grace and peace be upon you.

    ReplyDelete
  10. Absolutely beautiful, tears are in my eyes as I read of God's love which is so clearly keeping you going at this time. I lost my dad at a the age of 15 so I know grief but my goodness, you as a family are truly inspiring. I pray that I never have to experience the strength of that grief or difficulty again but if I do, I pray I can do it half as well as you have. You don't know me, I doubt we will ever meet but please just know how loved you are by so many people similar to me and we will continue to pray for you and think of you often as you transition into life with your beatiful boy no longer in pain. So much love x

    ReplyDelete
  11. I found your blog through mumsnet some time ago and have been following since then. Your eloquence, faith and courage in unimaginable adversity are incredible. You are strong and you will come through this. I am thinking of you today, although I have never met you. Sorry is not a big enough word. I wish you all peace and love in that unknown and unimaginable future.

    ReplyDelete
  12. Finally found the link to your blog. Got one link I replied to but not the proper link.You Richard and the whole family are an inspiration to all of us. Daniel would have loved the service but in no doubt would have had questions about everything and would have butted in on the story and probably changed the ending too! As I said to you - be in no doubt that this is just a job. Daniel and your family touched me too. The day we give up caring is the day we give up the job. Keep your faith. It was a privilege knowing you all. Rachel

    ReplyDelete