The other day, I received an email from another mother whose baby was recently diagnosed with I-cell disease and is still in the very early stages of grieving. She asked me in her email how we managed to stay so positive and this was my reply to her. I thought I would share it on our blog, and I would love for other mommies in our community to comment or share ways that they have managed to navigate this journey.
* Apologies for poor grammar and spelling mistakes, I wrote this early in the morning while nursing my 4 month old and making breakfast for my 5 year old.
I saw your email about an hour ago and I can't stop thinking about it.
Sigh... It has been such a journey and when I look back on it all, I can see all the ups and downs and some of the stages of grief. I feel like at this point in my life I am at the acceptance stage of it. However, in saying that a part of me feels like I will never be able to accept Gabrielle's diagnosis but I've also learned that life goes on and I'm tired. It's been 2 years of intense, intense emotions and it sure does drain you.
Things that have helped me...
1. Exercise has been a huge huge help to me. Those endorphins allow you to see things positively and it also helps by cleaning me out. Sweating all the toxins out of my body and making me feel a little fresh. Many times, I even cry as I run. Crying is now a very normal part of our day. We often take turns crying and I have become very good at crying while talking (which I could never do before, I had that 'ugly' cry face).
2. Blogging has helped too. It helps to write things down and to get some of your emotions on paper. There are many blog posts that are just too intense and would be way too much to share publicly, so we have kept them to ourselves. I think our blog has tricked many people into thinking that we're always positive, but that's not the case. I try to be as positive as I can, but our situation is just plain sad.
3. Crying. I mentioned this above but having a good cry really helps me to feel better. And for whatever reason, I cry all the time when I drive. Sometimes, I have cried so hard that I can barely see the road. I don't know how my kids don't notice it but most often in my car, I have tears streaming down my cheeks and spilling onto my clothes. Maybe it's a time when i can finally 'sit' and think for a minute.
4. Counseling. Having a child who is terminally ill is the hardest thing I have done. Counseling has helped us immensly and I highly highly recommend it. I remember my father in law recommending it and I wanted to stomp my feet and scream out loud: "how the hell is counseling going to help?". My daughter is going to die and couseling will not change anything. The fact of the matter is, my world has been destroyed and I have been stripped naked of all my beliefs and perceptions about what life is, and was going to be, and I have been forced to start all over. Couselling has helped me to understand all my feelings and has also helped me to figure out how to be a mother to my 3 healthy kids and to my sick daughter all at the same time. My job is big as it affects all of us. Many of my family members have suggested anti-depressants but I haven't used them yet as I am not depressed. I am sad, I am grieving but I don't feel like I'm depressed and unable to live daily life. In many ways, I feel like I'm using anti-depressants as a last resort for when she passes. When that day comes, I really don't know how I'm going to do it.
Please don't be hard on yourself. Let yourself cry, let yourself stomp your feet and scream at the unfairness of this all. It sucks. I think it's important to surrender yourself to the process and let your mind and body go through all the stages. Don't fight it, don't wonder about it, embrace the pain, the tears and the joy and have faith in yourself. It's something we cannot change or do anything about. Your daughter chose you because of what you could offer her and also what she will teach you about living and life. It's painful and it's beautiful and she wants you and needs you just as much as you need and want her.
Most importantly, Gabrielle provides me with so much strength. I don't have i-cell disease, and I am blessed to be given a healthy body and mind. My body and mind are such so that I can provide her with the best quality life I can. She is and will always be my source of strength and comfort and as long as she is alive, I want to give her the best life I can. Out of guilt? Maybe. Out of pure, intense, selfless love. Yes, absolutely. I love her with every iddy bitty ounce of me. I love her so much it hurts and it's even caused us to collapse on the floor in pain. Love is powerful.
I have this little quote pinned on my door by my computer and I want to share it with you:
"It takes patience, courage and resilience to embrace the unknown, to have faith in yourself, to nourish hope for the future, and to be open to the possibilities for new life as they unfold around you..."
One day at a time is my new motto that Gabrielle has taught me. This journey is full of heart wrenching joy, beauty and pain.
Amy
xo
