Life is much like climbing a mountain - the summits are always further than you think, with all the happiness and growth occurring while you climb. Lilly’s mountain had a mix of shame, uncertainty, depression, anxiety, panic attacks, mental illness and addicition. Her mountain just became more difficult and challenging to climb. Reaching the peak didn’t matter. What mattered was Lilly‘s survival through the journey. The five of us had to prepare ourselves and be by Lilly’s side, no matter what!
What I wish we knew at the start of the journey:
Getting a diagnosis is not EASY. As parents, we knew something was just not right. This was not a child with Oppositional Defiant Disorder - a disorder in a child marked by defiant and disobedient behavior to authority figures. We were dealing with something that was far greater. Something was destroying Lilly. It took us three years of pain and struggle to finally get a diagnosis.
Finding a therapist is not EASY. We went through a lot of therapists till we found the right fit.
Medication - it takes time to find the right medication. There is no one magic pill.
Have your loved one have someone to talk to. This can make all the difference to your loved one’s outlook and motivation. In addition to rehab, and sessions with her therapists, Lilly attended various group meetings.
Educate yourself and your family. The more you know, the better equipped you are to help your loved one and keep things in perspective.
It’s OKAY to not have all the answers. The process is a journey.
Encourage your loved one to follow their treatment plan. They have to learn to own their diagnosis and be committed to treatment. Things were stable as long as Lilly was following her treatment plan.
Don’t expect a quick recovery or permanent cure. This is a life long commitment. Be non-judgemental and offer support every time your loved one diverts from their treatment plan.
Encourage your loved one to Reach out. Sometimes the shame closes them up to talk to their family and/or peers. Encourage them to call a hotline. Just talk to someone because the minute they start talking, it gets easier. Had Lilly called her sponsor or a friend that night, things may have turned out differently.
It’s important to choose your words carefully, because what you communicate can either support your loved one or make them feel even worse about themselves and their diagnosis. We as a family had to continuously work on our language. Lilly was not going to open up if she didn’t feel ‘safe‘ and supported.
Just Listen.
You’re not in Control. I had a plan for Lilly, I had a vision. I had to learn that my plan, my vision was not Lilly’s plan. Lilly was in Control of her own life and her own choices. There was only so much I could do.
Don’t let your own FEAR of your loved ones diagnosis get the best of you. A lot of times I would be in my head, panicking over imaginary scenarios. I had to learn to own my fears to have a better relationship with Lilly.
It is NOT their fault. There’s a whole science to this.
As a primary caregiver - remember you are not ALONE. My brother and my uncle were my ‘safe’ go-to people. Anytime I was in a crisis or needed to talk they were a text/phone call away.
As a caregiver Seek therapy for yourself. Therapy gave me tools and an outlet to deal with my feelings and emotions. The way I felt was NOT Lilly’s problem. I had to work on myself.
No matter how hard you try, the sad reality is that you may lose your loved one to Mental Illness and Addiction.
Caregiver Trauma - I’ve been hearing this term a lot since Lilly’s passing. Looking after Lilly was spiritually, physically, mentally, and emotionally exhausting. I was always on guard, always on alert. I would pace the hallway till she came home, my ringer would be on in case of an emergency, I had anxiety, and was always in ‘flight/fight’ mode. I never looked at this as trauma. It was my duty, my responsibility to be there for Lilly - no matter what.
When the kids were babies, it was our duty to care for their every need. To make sure they were safe, fed, engaged, and happy. We’ve all had sleepless nights and anxiety looking after our little ones. Why was it different now that Lilly was older? Why was it different now that she had a disease? I still don’t think that I’ve suffered Trauma caring for Lilly. The trauma started when I lost Lilly.
I don’t know why I waited till Lilly’s passing to start blogging. Maybe it was because I was scared of the backlash, rejection, and judgement. We’ve always been a private family and after the initial backlash we became even more introverted. It took a lot of courage to open up my life and blog honestly. Lilly on the other hand was an open book. She shared her journey with anyone and everyone who would listen. She shared her experiences in the hopes of helping others.
I wonder if Lilly would have been alive today, if I had started sharing her journey earlier. Would she have found peace in seeing all your views, comments, and emails? Would she have felt unconditional love and support? Would it have made a difference?
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