To have and to hold, and to never grow old

I don’t know why it’s taken me such a long time to decide to sit down and slowly tell my losing Jessica story more consciously focussed on doing so than I have done before, when the truth is that it is such a big part of the wider losing Kath story that I have been continuously telling these past few years.I have deliberated and hesitated and repeatedly put on hold, the idea of deciding in how to go about in its telling, and have now come around to the idea, that just as I have with the whole losing Kath journey, there is no need for a specific beginning and journey’s end, and so I will start as I like to do, somewhere in life’s muddled middle, and tell what I will in small bite sized pieces, that will still be too big for many, but compact enough that I will be able to contain any re-telling that otherwise might overwhelm my attempts to keep emotions concise, or the order of things as precise. I thank all of you who decide to join me on this journey.

‘To have and to hold, and to never grow old’

The start of married life for any couple is an exciting thing, and Kath and I were not any different and though we had been together for countless years before we eventually married, our wedding day vows meant at last we would start our lives finally living together under one roof in a home of our own, and the real significance of ‘to have and to hold’ really started. Our first home was a one bedroom flat that we decorated as best as we could with our joint finances and being tiny it wasn’t too long a task and somewhere in the middle of doing so, our first baby girl Hannah was born, and it wasn’t long before we realised that home wasn’t going to be big enough for very long, and that babies don’t stay tiny forever, and though we loved our one bedroom flat, we started looking for a new home to now grow our family.

You could say it was like a bit of a whirlwind our first few married years, and then they ground down to an agonising slow crawl that lasted.. well as long as it lasted!

We looked at houses and flats for sale just about everywhere without wanting to change our locality too much, but none of the properties called out to us until eventually our 25th viewing hit upon the house that Kath and I both set our hearts on. It was a run down three bedroom house desperately in need of modernisation from top to bottom and was at the limit of our joint finances capabilities, but we decided we just had to have it, and all the work could be done gradually as our income allowed, just as long as we could call it our home we would be happy, that our to have and to hold now had a place to grow old, and room to grow and raise a family.

It took another year with solicitors and probate and other unseen things, but eventually we were given the keys to have and to hold and to open the door on another new chapter. One that saw the DIY never end and the decorating spread into every part of the house, as each new lifted floorboard or skirting board presented a new challenge, but we were busy and too excited to notice at first, just how exhausting the process would turn out to be, and somewhere in the middle of that, Kath fell pregnant again, and the work had to slow down for a while as her load grew in other departments.

As all newlyweds do, all we wanted was to be happily married, to have a place to call home, and to raise a family in our joint image, and it doesn’t sound like too much, but it’s enough to make most couples very happy.

Hannah was just one years old when Kath was expecting again, and two by the time she was born, but unlike the healthy 9lbs 8ounces that she weighed when she was born, her sister only weighed 3lbs 3ounces.

You know, you are never prepared for what life is going to throw at you, and all you want is the best for your family, and to have what everyone hopes of a normal life, whatever that is, but one that you can look forward to and understand, not one full of hurdles you are not sure how you will ever over come, but when you are married you no longer think or live as one, you’re committed to being there for the other, and in that way, to have and to hold never grows old, it’s a commitment that’s always living.

When from around 11am throughout the day that Jessica was born and in particular the hours that followed her delivery into this world, our to have and to hold took on a new meaning, and it applied not only to us as a married couple, but to us in the raising of children too, though in Jessica’s case, our first hold was limited to just a few seconds, while they rushed her to ready her for a stay in an incubator in the PICU (Paedriatric Intensive Care Unit). It was obvious from the start that something was wrong but all I could think of was Katherine and how maybe all of my future hopes for our smooth lifetime together, had maybe hit a few unforeseen stumbling blocks, and that our blissful anticipated start to married life, might become derailed so soon because of the challenges that were sure to follow ahead.

As a husband I was devastated, and as a father too, and as a relative of a much larger family I was even more broken too, by the thought of having every one pity us, when up until now I had thought that we had it all. Such is the nature of life’s lessons and living complacently. Jessica was life limited I guess by a series of complicated conditions that we struggled hard to comprehend, and more still to explain to anyone else, especially our own little Hannah, who was bewildered by why we spent so many long months bedside in Jessica’s hospital room, instead of spending more time in the home we were supposed to be making.

No one wants their child to be hindered by anything, or for health to threaten their normal quality of life, but for us as for so many people in this world, our imperfect circumstances paled in significance for what life meant day by day for our new baby daughter, who was just too fragile and tiny. I will write about her ailments in another piece somewhere, but along with her tiny size, she was born with a full head of hair, and something obviously wrong with one maybe both of her feet, and each and every new day that came after, they told us something new, another devastating revelation that impacted more and and more on our future hopes for what we had to live as a normal family.

Right from the start, I think I was quite reserved about talking about Jessica generally, unless it was to anyone visiting us at the hospital or during any of her short stays at home, because it was easier to relay everything that was happening day by day, to those who were present and the information still fresh in our heads, but by the end of each day, the amount of new information happening, the amount of new medical notes we had been given blurred into one long narrative that was impossible to share later with anyone asking. Quite simply there was no nutshell version to all that was happening, and so I didn’t really care to share, except to say that our daughter was seriously life threatened by her condition.

On a day by day basis, in the midst of all the changing medical opinions, one thing that did not change too much, was Jessica’s temperature, and my second ‘to have and to hold’ daughter was always so very warm, it was kind of intoxicating. She never really spent a day under 38 degrees centigrade and we got used to consider that as a good day, as often she way exceeded that too, and was simply hot to the touch, like a hot water bottle you never wanted to let go of. It was difficult seeing her so often in just a nappy and nothing else in her hospital bed, despite how cold it might have been outside, her temperature was always raging and we had to resist the temptation to cover her up, when we ourselves were so wrapped up as the weather dictated.

Kissing her on the forehead or on the cheeks or just continuously on her little hands, was the warmest experience ever, and I never tired of it. The have and the holding just never grew old.

There were a few high moments in that first year, on each occasion when little Jessica finally came home, and by that time we had adjusted to all of the equipment that came with her. All of the barriers to living the norm became our norm and it no longer mattered, because our family and living was only complete, when we were all really home and together, and I got used to the idea that life was not always going to be as sweet as I had anticipated, but it didn’t even matter, because a ‘to have and to hold’ means to embrace whatever the other is given, and Hannah and Jessica both made Kath and I who we were to the other, and all there was now was to grow old, with what ever the future wanted to throw at us.

You know as a man, or a husband and probably a father too, all I wanted was to be able to protect my family from everything, and to take any problems from them and shoulder them myself however I can, but that isn’t always very possible, and it’s kind of humbling too, that when it comes down to some things, how little we can do when life makes you powerless to protect your loved ones from what together we must come through, and each new burden or decision is just as heavy as the last one. Things don’t become any easier, you just have to somehow muddle through, and hope you can come out of it united and whole on the other side, whenever it is that you finally emerge having had and held tightly together through the process.

Jessica was always so warm to hold. Her last ten days she spent in the ITC Intensive care unit at St George’s, just as her life had started nearly a year earlier just as warm, and we watched her intently not knowing if she was going to make it through, if we would get another chance to have and to hold her again, or if we would see again at our home and see her grow old.

The doctors knew that it had been a rollercoaster journey of discovery and of soul breaking news every day, and perhaps they wondered if we had pieced together all of the many bits of information to help us realise that everyone of her separate ailments were not individual battles that needed overcoming, but that she was life limited and that was the main battle we had to come to understand, despite all the hopes we had for our daughter to come home and have a normal life as we would hope.

On November 28th they convinced us to let them give Jessica an MRI scan, which we consented to despite all the tubes and the life support machine that she was connected up to, and then we waited. She had been failing gradually every day and she needed more and more to keep her going, but she was on the downwards spiral. I remember the doctors asked us if we wanted anyone with us when they were going to consult with us on the results of the MRI scan and we called everyone of our siblings and our parents too, and a little while later we were all gathered into a room, for a doctors- family meeting the likes of no other, except perhaps the ones you see in the movies but rarely believe, and they showed us the scan results, and in particular a part of Jessica’s brain where it is said that regulates the body’s temperature, was not properly formed, and that even in the unlikely scenario that she could somehow make it back off life support, that she was only going to deteriorate and continuously suffer.

As we left the room, other doctors rushed us back to her bedside as she was starting to fail ever more quickly, and then they asked us the question you never want to hear. ‘Do you want us to take her off life support and free her from all of the tubes so that she can die with dignity?’

I remember Katherine looking at me, and me in an instant having to decipher what her expression might really mean, and then having to make the decision for the two of us, knowing what between us we had silently understood, and with my heart nearly bursting out of my chest I gave them the nod, to free our baby Jessica from all of the things holding her from us, to once again have and to hold her, and to watch her die peacefully in our loving arms, and we held her and kissed her with tears rolling freely, listening out for her tiny heartbeat until her raging warm body started at last to grow cold, and that was the last chance we had to hold her and our hopes to watch her grow old, grew cold.

I wonder about her in heaven, and if she is seventeen now and continuously growing, or if she now will never grow old, and if she’s still in the arms of her mother, or bigger now and stood at her side holding hands, and if they are as warm as I remember, but it doesn’t help one way or another. I can’t imagine what it would be like to have a conversation with her if she is now seventeen and continuously growing, neither can I believe she is a still a baby soul all these year but maybe I was wrong and some babies do stay tiny forever, all I can remember for sure is what my hopes for us all where and what it felt like to hold her, and it’s a memory that never feels old or ever grows cold.