A note to me… For you
It’s funny when I think back to who I used to be before diagnosis … I used to think I was so different but now it’s hard for me to remember the differences compared to who I am today.
I always thought I was a good person; caring and compassionate. I was not blind to my shortcomings and tried to work on them as often as I could.
There are things I never realized about myself “before” and it’s sad sometimes to think that I never believed in myself like I should have. It’s sad that back then, I needed approval from so many for even the smallest of decisions that I would make… Wondering what so many thought and if I would be hurting feelings along the way. So many things about my life were never really about me but that was my own lesson to learn. You see, I believe we are all here to learn lessons … Some more than others, but if we believe this we can focus on ourselves as individuals.
So before MLD I was insecure, needy of approval, afraid to be assertive and overall just too concerned what everyone thought. I remember an incident during Eli’s MRI that was so poignant to me…When they were taking so long getting back to us and the fear was growing, then eventually they came back and said they needed to do contrast, I knew they found something. I knew I had to call the Dr. Immediately and tell her that we needed to know today what they found and not have to wait. As I was calling her (upstairs in the hospital) I remember thinking that I hope I wasn’t annoying her… That I hoped she understood why I was telling her we needed to know now. I was actually worried about what she thought of me and if she would be upset. Little did I know that she was the one who was waiting to see us as soon as Eli was out.
If I could go back to the young mom (even before Eli was born), the mom who was afraid of anything ever being wrong with one of her kids, the mom who thought she could never handle anything and the mom who thought she would crumble at the slightest inkling of anything seriously being wrong with one of her babies… Actually more importantly if I could get to a mom or dad who thinks these same things today and who doesn’t know it but will face the unimaginable some day, this is what I would tell them:
Don’t believe your negative self talk …you think you know, but rest assured it is true that you are given strength you never knew you had when you need it. No matter how many times you drum up a scary scenario in your mind about your child being sick and no matter how scary that is, you can handle it! It is always worse in your head… Everything is! Don’t worry so much about pleasing people… If you do, you might miss out on something important. (If we listened to some neurologists and were afraid to piss people off Eli would have never gotten that MRI)
Trust your gut… ALWAYS… You can’t get back missed opportunities. Don’t be afraid of life, or death or sickness… It’s ok if something bad happens …good things can and will come of it. Don’t try so hard to hold on to relationships that are not meant to be… Illness or a sick child scares some people and changes some people too. It’s ok because I can tell you that many people who come into your life after a diagnose like this will be some of the best people you could ever imagine meeting. After diagnosis I would tell you to not listen to anyone! Listen to you! Fight the good fight… Just because someone is a doctor does not mean they know what is right for your child! Do your research! Sometimes quality is more important than quantity in terms of time. Accept help…. It’s ok and it does not signal weakness. People will love you harder and longer …. Let them. Don’t be afraid of change… It is inevitable … Friendships will change, you will change, everything will change… It’s ok. Windows will be opened when doors are closed so keep your eyes open and be ready. One of the last and most important things I have learned is don’t compare your child, your disease or the way you are dealing with it to anyone else. There is always going to be someone who is worse off than you or someone who’s situation is not as bad… Don’t compare and don’t feel that you have to be just as happy as them. Be patient with yourself, be patient with others and most importantly LOVE yourself. You will get through anything and everything better once you stop judging yourself and putting unrealistic expectations on yourself. One day at a time and you will be ok.
I am learning to let go of expectations with everything in life and just live… It is truly the only way.
You don’t need a “D” day to realize it’s ok to change and to be who you truly want and need to be. You don’t need something life changing to change your life! Change NOW! Be who you are NOW! Believe in you NOW! Stand up for what you believe in NOW! Life is short so make it count!
Fear Not 
I totally agree with how you think. We are here for the advancement of our souls by learning lessons. I have had to learn quite a few in many areas of my life. The majority of people do not know these facts about life but there is a shift happening in our world and more and more folks are learning this. We don’t always get what we want but we always get what we need. I have been following your journey from your first post and have laughed and cried but above all I, too, have learned from what you are all going through. Everyone is on their own path and I am sending you much healing light along your oath.
Thank you!! Yes i truly believe everyone has their own issues they need to grow amd go through… We need to see that in each other and try not to judge the journey we are all on! Thank you for following ours! Xoxo
Beautifully said. I’m in awe of you. I will try my best to use your words to shine a little brighter, love a little deeper and push the negative aside. Thank you!! I hope you had a wonderful Thanksgiving!!
“don’t feel that you have to be just as happy as them. Be patient with yourself, be patient with others and most importantly LOVE yourself. You will get through anything and everything better once you stop judging yourself and putting unrealistic expectations on yourself. One day at a time and you will be ok.”
Thank you, I am a mum who has her little unimaginable to deal with, very little compared with yours, but still unimaginable and often overwhelming for me. And today I did need to read what you have written. So all I can say is thank you.
Alice
Thank you so much!! I am a work in progress every day!!! Thank you for your input!!!