The first thing Tim and I did this morning was sit down on Joshua’s bed and fill him in on what would happen today, we did our best to assure him that we loved him, that this was all going to make him feel better in the end and that he would hear some scary things today but that at the end of the day we would bring him home with us. He seemed okay, though it’s hard to know what the little man is thinking when he can’t talk to share his feelings or worries. Tim drove us to the hospital and dropped us off, then he went home with Kaleb and waited for the babysitter before coming back to join us. During this time Josh was booked for a few tests. The first was a blood test, and as soon as they took his blood he began to cry, not so much in pain but in knowledge. He closed his eyes as tight as he could and sobbed, he continued to sob all the way to the chest X-ray area where he put his head in my lap, holding tight to my hand and his monkey. They called us in for the X-ray and he sat where he was supposed to sit, did everything he was supposed to do without being asked and as we left he once again began to sob. It wasn’t until we got to the clinic and found some toys that I managed to distract him long enough to stop the sad crying.
We were taken to a room where the nurse came in and asked all the requisite questions, and then the resident surgeon came in to explain the surgery. He began to try everything he could think of to distract me from what the doctor was saying, until finally Daddy arrived and I was able to play with Josh while Daddy listened to the doctor. The resident was the same one who sat in on his last surgery in December, and he was able to go over in detail every aspect of his previous surgery, and then explain the new surgery, the risks and the fears as well as the hopes. As it turns out, no one, not even the best surgeon in the world can figure out why his pulmonary valve is no longer functioning, they all just said they are very surprised and hope it doesn’t happen again. He then explained that there may be a need for a shunt from the brain to the lungs, again something they don’t want to do but may need to do. All the information, all the statistics are laid out before you and then they hand you a pen and ask you to sign on the dotted line.
Did you know that the death statistics are 1/20? (I won’t bore you with details on how I feel about that little number, I am sure you can guess). We signed, what else are we supposed to do?
He had a duplex scan and watched Dora, then back upstairs for a chat with Dr. Van Arsdell who again went over the statistics with us and shared his ideas on either repair, complex surgery or a full replacement. His thoughts on this are that we will likely need the replacement but that he will do everything he can do prevent that from happening. A complex surgery is not as likely since his heart sack is where they would need to take the tissue from and since this is third surgery there is not likely going to be any ‘good’ tissue to use. (A complex surgery means that they in essence create a valve from his own heart tissues). It all sounds terrifying. Through out all the tests, talks and explanations Josh held my hand tightly, but his tears at least had stopped.
We took the train home and Josh sat beside me with his head resting on my shoulder, his big eyes sad, his beautiful smile gone. Before bed I asked him if he wanted to talk about today he didn’t respond so I explained that in order to make him feel better they needed to do an operation, that it would hurt and it would scary but that Mummy and Daddy but more importantly God would be with him the entire time and we would take very good care of him and that when it was over we would bring him home with us, he listened but his eyes were closed. Then I asked if he wanted to talk anymore or if Mummy should stop and he simply said ‘stop’. We watched an episode of George to cheer him and then I tucked him into bed, said our prayers and had good night kisses.
My mothers heart is breaking tonight. This just sucks on so many levels. (Not an overly eloquent way of putting it but I can’t think of another way to tell you how I feel.)
7 thoughts on “He knows”
I don't know what to say except that my mommy heart is hurting for your mommy heart and that indeed this sucks! I am writing through tears for you and your precious son. I prayed for you and your family today and will continue to pray that God will be for you all that you need.Hope Strong
Laurie, my heart is broken for you all. Tears fill my eyes. My heart is heavy just thinking about your day and the days ahead. I wish kind words could make this better. I wish saying that I am praying would provide some comfort. Today at evening prayer in my new community, I almost choked up as I told God he is too young to have to go through all this again. I can only begin to imagine how you are feeling. How Josh is feeling. This does suck. on so many levels. and words that i write here cannot fix them… if they could i would write essays upon essays to make josh better and comfort you and tim.I just finished a book that challenged me. Talked a bit about our role in God's plan and purpose and story for our world. I suppose all we can do is trust that somehow this painful and shitty surgery and all that is surrounding it, that somehow it fits into God's story and he will use it. that brought a twinge of comfort in my situation today and I hope and pray that it brings some comfort, and some peace, and some hope to you.loveElizabeth
My soul is weary with sorrow; strengthen me according to Your word. Psalm 119:28 Father, through Your Holy Spirit, grant wisdom,insight, knowledge, discernment and understanding to the physicians; guide their hands with skill and unerring precision and direction.Lay Your hand of healing upon Joshua and speed Him back to full recovery and complete health.Remove every worry, fear, and anxiety from the hearts and minds of Joshua, Kaleb, Laurie and Tim and empower and enable them to put their total trust in you. May it please You to grant them Your peace that passes all understanding. May Your Holy Name be uplifted and glorified. In Jesus, Holy Name, Amen We write this with deeply sincere prayers and aching hearts, With much love to you all,Irene and Chamberlain
Have just read your blog Laurie…my heart is breaking too. I will look at his picture and pray strength and vitality for your little boy and a reassuring knowledge of God's presence as he goes through these choppy waters…
I am a mother too and I can't begin to imagine the stress and pain you have had to endure over this journey. But God is faithful. As I read your story I am reminded of a beautiful song:I have a MakerHe formed my heartBefore even time beganMy life was in His handsI have a FatherHe calls me His ownHe'll never leave meNo matter where I go.He knows my nameHe knows my every thoughtHe sees each tear that fallsAnd hears me when I call. I hope that brings you a measure of comfort in these trying days. Please know that you and your family are being upheld in prayer. May God bless you all.
Laurie, Josh will be on my mind and in my prayers all the day long on Thursday and even still as he recovers. May His presence be a comfort to all of you as you endure this difficult experience.
There are no words for such a horrific event! Just plain fear and sadness and it is fully expected that you would all feel that way! We will pray for you all, that in all and through all, God will show himself to you in such a comforting and loving way! There is sadness in my heart as well Laurie, such a young child to go through so much – he is brave, very brave though! Be proud of him Laurie – he is very brave!