Joseph

 

The 8th January 1997 was the happiest day of my life. My wife, Sam, had just given birth to my son Joseph. I was ecstatic and it was the moment I had wished for, for as long as I could remember. The feeling of holding your child for the first time is not one you can replicate. 

Sam and Joseph stayed in the hospital overnight and after phoning round friends and family I went home to an empty house and the late evening football highlights.

I awoke the following day as a proud father and couldn't wait to get back to the hospital to hold my son once more. 

There was a stream of visitors to Sam's bedside during the day, mainly from relatives, who were delighted to meet Joseph. My daughter Grace, Sam's child by a different relationship, got to meet her brother for the first time. Our family felt complete. 

Checks were carried out on Joseph and we were discharged from the hospital just as snow started to fall outside. The Who were playing The Kids Are Alright on the radio and life felt good. 

Over the next few weeks we fell into routine of life with a newborn baby in the house. Although it was very hard work it was all worthwhile because of the joy he gave to us and both of our families. 

When Joseph was nearly seven weeks old Sam took him for his six week check at the doctors. I was unable to attend as I had to go to work and left for work that morning assuming everything would be fine. That was until I received a call later in the day from Sam saying that the doctor had asked, "if he had always been this floppy?" and that she was going to refer Joseph for further tests.

From this moment I think we both thought that there was something seriously wrong but whatever it was we were determined that Joseph would be fine. 

A few days later we received our referral and headed off to the hospital. The hospital were not expecting us and after much hanging around we finally saw a consultant. Heart checks were carried out on Joseph but as no beds were available we were sent home to await another referral. This time to attend a different hospital. 

Here we saw a paediatrician who asked us a whole ream of questions and arranged for tests to be carried out on Joseph over the following couple of days. One of the questions she asked was if myself and Sam were related. I remember us laughing when we said we were married. Little did we know that her reason for this line of questioning was relating to genetics and what she believed was wrong with our little Joe. 

We were well cared for and when all tests were completed we waited to be discharged. We were told that either our doctor or the hospital would be in touch but they could not tell us what, or if, there was something wrong with our son. As we left we were handed a letter and we were asked if we could drop it off at the doctors surgery. 

As soon as we were in the car Sam tore open the envelope and her eyes scrolled down the page until she saw the diagnosis - "Werdnig Hoffmann Disease." Not something either of us had ever heard of and we headed straight to the library (no internet in those days) to find out more. 

Sam found a medical dictionary and starting leafing through for the W's until we found what we were looking for while Joseph sat innocently in his car seat. What stood out was the text that said infants were unlikely to live past the age of two. I think my cry of pain must have been heard all around our town but if anyone shushed me in the library I didn't hear them as I made my way for the exit where I collapsed onto the pavement telling Joseph that this was not going to happen to him. Incredibly Sam waited patiently to photocopy the page from the journal so we had the information we needed. 

We headed for home with me in complete denial. Sam couldn't even walk into the house and crawled on her hands and knees in absolute hysterics. Once inside we held each other tight and sobbed and sobbed with Joseph looking up at us. We then had to tell our parents and Grace what we had found out which was also hard seeing our mums and dads and daughter in such pain. 

Our doctor called and we arranged to go and see her the following day. She told us about Werdnig Hoffmann disease, also known as Spinal Muscular Atrophy, and that the diagnosis was correct but it was hard to say if Joseph would live for months or years.  

We tried to live life as normally as possible for ourselves and Grace. That's if normal includes regular visits to the doctors/hospital, using a suction machine to clear the mucus from the back of Joseph's throat and planning his funeral with the undertakers. 

It was so unfair. Here was our beautiful baby boy with a gorgeous smile who was going to be taken from us so soon. One of his biggest smiles was when he first tasted chocolate - a fondness he inherited from both his parents. 

Over the following weeks his condition worsened and he was finally admitted to hospital where we stayed for a week. Watching your child fighting for his life as his oxygen levels drop is the hardest thing I've ever had to witness but I will be forever proud of the way he fought right to the bitter end. The nurses cared for him and made him as comfortable as possible but now it was only a matter of time. 

After six days of being by his bedside Joseph seemed to settle a little - probably tired after his exertions of the previous few days - and the nurses encouraged us to spend some time out of the hospital. We went and had a drink with Sam's dad but before we could even finish our first glass we were both desperate to get back to Joseph's bedside. 

The following morning we received the fateful news as the doctors told us that there was nothing more that could be done for our son. Tubes and monitors were detached and Joseph was given to us to hold for the last time. Our friends came in momentarily and the words, "safe journey fella" were uttered - it makes me cry every time I think of it. Joseph sat in Sam's lap with me holding and stroking his hand while he slowly slipped away. He was incredibly brave throughout his whole life.

I then held Joseph for a long time. I didn't want to let him go. The nurses who had been so kind offered to do prints of his hands and feet which now acts as another treasured memory of him.

Eventually we had to leave the hospital which was so incredibly hard to leave our son behind. We both saw a butterfly float past and to this day I think of Joseph every time I see one. We then went to my in laws to see Grace and many more tears were shed as other friends and family were told the sad news. In between bouts of crying and needing to be with Sam I watched Brentford lose the play off final at Wembley on TV. The 25th May 1997 really was a terrible day. 

Later that afternoon we headed home and I dismantled Joseph's cot. I think we were still in a state of shock and much crying was done over the days leading up to the funeral. 

On the day the church was packed with friends and family plus the usual morning congregation. At the very front sat an old lady. My family thought she was part of Sam's family and Sam's family thought the opposite. It turned out she was just a lady that liked to sit at the front of the church - something insignificant but it seemed to lift the mood a little. If there is one thing I regret in life it is that I didn't carry Joseph's coffin into the church. I was given the opportunity but I just didn't think I could manage it. I wish I had shown the same courage as my son in his short life and done this last act for him. 

I miss my son very much and think about him every day. My heart broke the day I found out he was going to die but with the help of Sam, my children Grace, Maya and Dan and my two grandchildren they have helped mend it.

I love you Joe. Forever in my heart.