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Blog and Podcasts about Autism


Funeral candleMay 9th, 2017 will forever be etched in my memory. I was devastated, fearful and heartbroken. The moment I opened my morning emails and saw the words “I am sorry to tell you…”, from my mother, that my maternal grandmother had passed away the previous afternoon, whilst I was asleep thousands of miles away brought me to breaking point in an instant. It was as though someone had just ripped my heart out and stomped on it without a thought for the repercussions. I could hear this loud, horrible and unexpected sound, only to realise it was my own wailing and crying. My children came running into the room thinking I was laughing loudly about something, when Adam told them I was crying as their great grandmother had passed away and I was upset. The boys left me alone and Adam stood by next to me, comforting and rubbing my shoulders as he watched me pouring out my pain and despair.

I had known for a few months, thanks to my amazing, very dear and close cousin Bert, that my grandmother had been very unwell again. Since January of 2017, she had had double pneumonia, sepsis, fighting MSRA, and had a stroke all in the middle of this final fight. As I am in England, over 5000 miles away, I kept in contact with my Uncle D, who for many, many years was her carer. In the same way as she cared for him his whole life, he retired in order to look after her. They were extremely close and had never lived apart. For all intents and purposes, they were a couple who did everything together. Never a closer mother and son bond could there have ever been and the love between them was precious and endless. To this day I could never be more grateful to him for the love, care and attention he gave to her, selflessly and without hesitation, over many the years. It was through him and my cousin Bert that I was able to find out what was going on and try to prepare myself for the worst and hope for I could survive it all. She was 85 and such a fighter and I couldn’t have been more proud of the woman she was, the love she gave, the safety I felt in her presence and the strength she had until the very end.

When I first found out she was ill, I began to make preparations for my return should the worst come to fruition. I hadn’t been back home to Texas for over 8 years and my US passport had expired in the meantime. In addition to this, my UK passport had also expired and I knew I needed to work fast. In March of 2017 I made arrangements to renew UK passport, just in case I needed to go to the US fast, along with The Enforcer’s (my eldest son) passport, as he also had two expired passports and was registered with the US embassy as American. As official US citizens we can only enter on valid current US Passports, which has a long and awkward renewal processes. It had always been my idea to take him with me should I have to go. This way I could focus on him and his presence would force me to hold my emotions together for his sake and give me the strength to deal with the emotional and dysfunctional family mess I would be walking into.

Once we had our UK passports towards the end of March and pictures for our US passports, I knew I was in a stronger position but still hoping I would have time to plan and arrange things slowly. I realised that the US passport renewal process would take 4 weeks, for mine, by post but The Enforcer’s would require physical presence at the US Embassy in London as he was a minor, along with pictures of him from every year since his last passport and a notarized declaration from his father, who is not an American citizen, agreeing to his renewal. Wow, what I mess I thought. But was prepared to do it should the need arise. However, I felt I was stuck in limbo. I couldn’t send off for my passport in case I needed to travel immediately and my documents were in transit and I also couldn’t make an appointment in London to renew my passport as it wasn’t technically an emergency and I was not travelling within 2 weeks. It was difficult to plan so I just had to sit and wait, hoping against all hope my grandmother would start showing some signs of improvement.

As time wore on I heard more and more about my grandmother’s lack of real recovery. She was being made comfortable but she was only waking for 30-45 seconds at a time and then going back to sleep. Her inability to remain conscience really shook me, but I still had a sliver of hope that perhaps she was repairing inside and she would eventually come to and regain some form of quality of life.

In April of 2017, I was informed by a different uncle, M, who I had only spoken to twice in about 9 years, that my carer uncle was signing a DNR (DNR= Do Not Resuscitate) for my grandmother. I knew then, that anything could happen and at any time. She was only tiny, had diabetes, one kidney, bleeding internally on a small scale and dealing with the aftermath of her previous traumas. I still believed that maybe, just maybe, she could make it through. However, as you already read, this was not the case.

Once I finally regained some form of control over my breathing, as I was almost at hyperventilation point to slow my crying, I just tried to figure out what I was going to do and what I needed to arrange fast. I knew I needed to let my older brother know the situation, but being 6000 miles away from him and 8 hours ahead, it would not be an easy task. Once he was informed, he planned to drive 14 hours to get there with his wife, who up to this point I had never met in their 25 years of marriage, and would be staying with our mother. Me…well, staying with my mother was not really something I particularly wanted to do. She and I have a somewhat distant relationship. Not through my choice, but through her own actions and lack of interest. As I also have a very strained relationship, if you could call it that and dislike of her husband, I really didn’t want to be under their roof. I had always planned to stay in another nearby city with my dear cousin Bert for support and emotional comfort, when the time came, but because of my brother my plans changed. I called my mother to express my condolences and my personal sadness. I told her I was going to stay with my cousin Bert. This was by choice in order to void any family drama or issues. She sounded so disappointed and hurt, but said it was my choice. She mentioned my brother would be staying there and so I thought perhaps, I should think about her and having my brother there for support may be more helpful. In the end, I agreed I would stay with her, but didn’t want any drama or issues. Following this conversation I was on the phone again with my brother to state I would also be at our mother’s and he assured me, there would be no drama as he would quash any issues and deal with them if need be. This gave me the confidence to do what was necessary in spite of my huge reservations about the whole situation. My brother is aware of my AS and my mother, but was not sure if my mother had actually told my stepfather. I had originally requested she keep my medical information to herself. I didn’t not want to give Steve more excuses to use to try to justify devaluing my existence, as he had spent many years in the past doing so on a daily basis. Only time would tell if she kept her word.

At this point, although I knew where I would stay, I didn’t know what, when or how I was going to get to the US and how fast I needed to move. I had never been to a funeral for someone I cared so deeply about before. I didn’t know the process, when or how things would occur and also how I was going to deal with it all. It truly was a lot to take in and a very steep learning curve. I had to wait for uncle M to see the funeral home and find out the arrangements before I could even start on any real preparations. It was only 1pm on the 9th of May and things were in the air. My head felt like it was stuck in a fog, but I needed to try to focus on what I needed and could prepare until I knew the finer details.

It wasn’t until 8pm that evening that I found out the viewing was to take place on Thursday the 11th of May and the funeral on the 12th of May. It was all so fast and my time was running out. I knew I would have major travel ahead and the thoughts of “what if I don’t make it in time” buzzing around my head. It was decided that it would cost too much and be too stressful to take The Enforcer with me and we didn’t have the time to get a notarised letter as at 8pm and all of the solicitor’s offices were, of course, shut. I was going to have to just do this on my own. The thought gave me fear, anxiety and panic. I was fearful of travelling alone, fearful of the anticipation of the airports, the planes, the noises, the people, the processes, the unknown, the social expectations, the anticipation of family strained communications, emotional stress and most of all how was I going to actually say my goodbyes to such a big influence in my life.

As a planner, arranging for all my needs gave me a big focus and distracted me from the very reason I was travelling to begin with. I was, luckily, able to book the very last appointment at the US Embassy the very next morning. 7:45am is a very difficult time to be expected to arrive in London, which is over 3 hours away from my home, out in the sticks of Neverland. I had to move fast and managed to book a plane ticket for the very next afternoon, also leaving from London at 3pm. This arrangement gave me enough time to make sure we were up and out of the house by 4am to be at the embassy and also have enough time for them to process my passport, hopefully without issue and still arrive with time at Heathrow for the 3 hour pre-flight deadline. I just had to hope things were straightforward, there were not issues with granting my emergency 1 year passport and there were no major delays at the airport. Time was critical and there was no time for sleep.

I stayed up all the night, too upset to eat a bite that day and hadn’t eaten the day before because as a consequence of my ADHD meds they can and quite often do, reduce my appetite and therefore I don’t eat. However, now my emotions and other unrecognisable feelings also factored in to my inability to eat. I needed to get my head in order and even my medication doesn’t take away all my ADHD symptoms, they just reduce them a little. I needed to ensure and plan, to the last detail, my impending trip skipping nothing out because it could be the difference of being able to say goodbye or not. The children even went to bed late on the 9th as I was too busy trying to pack, print off paperwork, destroying my house in the process, planning for their needs while I would be away, confirming in my own mind how things were going to work and preparing for my emotional struggles as best I could. I had fear and anticipation coursing through my veins in between my crying and remembering why I was traveling in the first place. By 2am I was still working hard on sorting things as all my boys were peacefully resting their heads. I sat in the silence once I felt I had everything sorted and breathed in slowly, trying to remember I needed to be strong. But I didn’t feel strong, I felt weak. I felt broken, I felt scared, I felt feelings I couldn’t even identify and looking back now, I still don’t really know what they were, only that I didn’t like them. For me, it is important to have plans, to be in control, not the control of others, but control of myself, my environment, my actions and my feelings. This whole experience was new for me. Although I had had my grandfather pass way in 2005, I was not able to travel as I was 36 weeks pregnant with The Enforcer and neither Adam nor the airlines were prepared to let me travel. As it happened, my grandfather’s funeral was a very difficult and major family drama session. It had left quite a dirty mark on many family relationships and for me created a fear of what may lie ahead once I arrived in the US.

Part 2