I haven’t blogged for awhile, my head hasn’t been in a space to define my thoughts with clarity. I thought about putting pen to paper a few times – but what’s to say? I don’t want to be negative –but I also couldn’t be positive. The last few months have been a whirlwind of events and tough times.
When Raphael was first diagnosed and over the first few months, I was quite proud of the way we coped with the diagnosis and the medical issues ahead of us. I felt at the time that I accepted fairly quickly our life, and mostly imagined good things; fun family times, silliness, joy. I knew this life was for us, chosen for us – and we for it. You’ve read my other posts about our journey with Raphael, and whilst the early months were hard, exhausting, stressful and gut wrenching, I knew we just had to hang in there and ride it out and then the sun would shine on us again! I knew it would.
Just 5 months after Rooney boy was born and the week we were discharged from hospital following his heart surgery – surprise! We found we were pregnant again. Believe it or not, despite how crazy it was going to be, I was actually excited. I was thrilled to have another gorgeous addition to our family.
I also realised there was more to my excitement – how much unknowingly I was yearning for that normal experience most families have when they bring life into the world. Where they live in a little bubble of love where the whole world seems to stop to you whilst you soak up the smell of your newborn and their soft little skin. Of having a baby lie on my chest and not be whisked away to be resuscitated. Of having my toddler climb into bed with me early morning whilst I feed the baby rather than dropping her off to care whilst I raced in to make Doctors rounds and process medical terms and test results. Just normal baby goodness that I felt had been stripped from us. Oh I was excited! I felt like all our issues would go away if something normal came along to replace the very inconvenient way Raph entered this world and the months that followed. This was it! Once this new little bundle would arrive, life would return to normal in the Burfitt family.
Shortly afterwards we found we were having not one baby Burfitt- but twins! Shocked yes, but oh my goodness my exhilaration – I always wanted twins and I never thought we had a chance. So much to love! I was also pretty proud of us – by the end of the year we would have 4 kids; a 2.5 year old, a 1 year old and two newborns! I thought who could stop us now? People are going to think we are a super family! I was proud… and I knew probably too proud but I couldn’t help it.
After 2 months, God took those little twins up into his arms. At first I was a little numb and very practical. Twins often struggle a little bit more than other babies to reach term. It made sense. I was sad, but our medical life with Raphael had made my approach initially very practical so I was still in that mindset on the first day. We were considering our options of what to do next (medically) with the twins – when the Doctor, watching a sickly Raph out of the corner of his eye sent us straight from his rooms to the Emergency Department. There was no time to grieve. Raph needed us at the moment. Tomorrow – we will grieve tomorrow.
Well tomorrow came upon us like an unstoppable train. The reality of the loss of those two little rays of hope in our lives really hit home and I could not drag myself out of bed. The gravity of losing two children really struck me. I have never felt so lost, desolate and hopeless as I felt that morning. Until the phone rang.
I can’t even write this next part without a lump in my throat and tears streaming down my face. Charlies closest friend and cousin Andy was very sick – he probably wasn’t going to make it through the day – come to the hospital. Charlie went to him and along with Andy’s family and wife, spent with him his last hours here on earth. It’s still too raw to share here and I don’t think I could do justice if I spoke further on this matter, so I won’t. I’m sure you can imagine however, that the months that followed have been the hardest for everyone involved so far.
It finally it all hit – the anger, the grief, the stress. My husband was in a dark place, my son was tubed in ICU and I was heavily bleeding in a hospital room. Where is God now? Why is he doing this? Haven’t we given enough!? Just give us a break please, let us rest, let us grieve. But he didn’t. Raph continued to get harder with every day at a time we needed the most space. We couldn’t even support each other – separate both in physical location and in carrying our own grievances. Even after returning from hospital Raph seemed to be excruciatingly hard to look after. I did, at times, feel God reaching down with a gentle touch on my shoulder: ‘I’m here’. I shrugged him off – go away. There is no room for you here in my grief. And like that, I pushed Him out.
The reality that Raph is going to need a little more attention than another kid, every day for the rest of his life, really started to take hold. I see other little babies in the hospital with issues, you get to know the families, worry with them. Then they have their surgery and suddenly, within a month or two, they’re out. Done and dusted, back to normal life. Its gut wrenching every time that happens – I am so jealous. I am happy for them, but I really wish it was us. The reality of all we had just experienced started to dawn on us, and we both entered a delayed PTSD. Everything associated with Raph equalled stress and thats how we began to see him.
The last 3 months since we lost the twins and we lost Andy, all I continued to think was “We picked up our cross, and then He deserted us”.
But did I pick up my cross? Or did I pick it up and then put it back down and say: ‘Hey! I’ve done my fair share!’ He was there and I built a wall.
I’ve been stuck in a cycle of buckling down and waiting for the storm to end – instead of learning to build a solid ship of trust and entering the battle head held high. A cross is not a small hiccup in your life. Truly, a cross is hard, its life long and you can’t do it alone. He was there but I wouldn’t let down the wall.
What is it that’s so hard? I look at my beautiful angel faced baby and he really is so cute – so what is the big deal? I should be must happier about this, I have the most wonderful husband I could have wished for and two precious babies – why is this so hard? But it just is. I think as humans we always want the best for our family life. The easiest route. The lovely family photo where everyone is laughing and life is great and it all comes with ease and naturalness. I understand now that having a son with a disability is something you continually have to accept, not just once off at the start. It’s like a rabbit warren of issues and struggles with hole after hole to climb out of.
I haven’t mastered it yet but I’m working on it. I still find it hard to swallow that I wasn’t as accepting or as ‘good at this’ as I thought I’d be. I thought it was all about me and how strong I am. The stronger I am, the tougher, the more organised, the less dramatic, the more well-informed – the better I’ll cope. But the fact is no matter what I do to improve myself, I cannot do it alone.
It’s dangerous to get stuck thinking if we can just strive towards perfection then we will get it. We will always have waves to ride, lessons to learn, flaws to patch. We will always have to learn to grow to be the people we were designed to be. The only way to get there is to ask for (and accept) His help. He is there, if you let Him in.
To read our introduction and background story of our son and life with Down Syndrome, click here
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