**As I was typing the last word in this entry this song started playing.. Open it in another window as you read this.. Because I think she wants me to share her message to me, with you..**
ok buggers. ok baby.. ok.. i love you. i love you. i love you
I was talking with a friend today.. a new friend from my new life. My AD life.. This friends job is to fundraise for researchers.. well kinda. Her goal is really to raise money to save kids. To stop them from suffering.. from dying. .
Its a big deal. It matters and it can be all consuming. The pressure can be overwhelming at times.
I get it. So much. .. except I don’t. ..
She asked how I dealt with it. Since we are so similar. How do I cope with that anxiety and pressure. The need to do so well. .. I think we were both a little shocked when I said I don’t. . because losing my Jennifer changed me in some surprising ways.
I know to my core. To the very essence of my being. I cannot control anything.
Nothing is really in my power. All I can do is my very best and what’s going to happen.. whats meant to happen will happen.
I’ve never wanted or tried for anything in this life as hard as I did to save you.
i failed.
i couldn’t do it.
if i can’t do that.. if i have no control over that.. i really can’t control anything
So I know with everything I do… all I can do is play the part I am meant to play. I can only do my best and what’s meant to happen will happen.
Its the most freeing thing I have every experienced. And it knocks my inflated ego right back down to reality. Its terrifying and exhilarating. That daily acknowledgment that I have control over nothing.
If I can’t stop my child from dying..
or suffering.. i couldn’t stop your suffering..
Day after day. No food or water. She suffered. Day after day. She suffered.
Well than I really can’t control anything. So if I try for a partnership.. Or a donation and it doesn’t happen it wasn’t meant to. If a collaboration (Im looking at you CrossFit) if it isn’t coming together the way I hope it will.. well then it’s simply not meant to happen right now. .. So I will wait and keep trying until the time is right. Until its meant to happen. Because it IS meant to happen.. just not on my time table.. (still looking at you CrossFit).
you were meant to live
to be mine
and you were meant to die.
I am not ok with that. I will NEVER EVER forgive God for laying out this wretched path for Jennifer. .. or for me.. for all of us. I will forever be violently angry with Him.
It scares me to admit. To really embrace it.. but there isn’t a damned thing I could have done to change it. .. To save her…save me ..to save all of us..
And this is my faith. Its why I have said before I think we are taught to pray the complete opposite way that we should. Because he cannot change us from ending up where we are meant to be. He can only help us change the way we cope with it.
When I say now to families they are in my prayers its not that their child live. Its not that they beat cancer. I pray that they have no regrets with their choices. I pray that they find joy in the moments that they can. I pray that they are able to ask all the questions they have. I pray that they are able to find the strength to face each and every day.
Because in the end, what’s meant to happen will happen. And all we can do is try with everything we have to get us to where we hope that end is.. I believe we will be where we are meant to be.
The way we deal with the journey is what is up to us. Its what is in our control and I believe its the part He can help with. Its where the power of pray truly lives.
The only graduation we got to see.. Im so glad my parents and Tony came even though it was “just” her preschool graduation. We had no idea its all we would get
Maybe it also hit me today because of preschool completion day for Nicholas (he still has one more year).
Jennifer went to one particular program. She loved it. We loved it. But we didn’t send Jonathan there. I debated it back and forth and obsessed on it. On what we were meant to do. .. Because I didn’t have a strong reason to not send him there.. But it kept bugging at me to put him in a different program.. around and around it bugged me. So we eventually chose a different preschool.
Then a month in.. Jennifer was diagnosed with terminal cancer. We gave her the choice to go to her kinder class 2 days a week or return to her preschool. She immediately chose preschool. And it was so the right choice. I think she only got to go 4-6 times. ..
… but still I struggle. I look through pictures and I see her smile. A little droopy .. I thought it was cute at the time.. But now I wonder was it the start of her tumor? And the what ifs still haunt me..
But. But if we hadn’t moved Jonathan she wouldn’t have had that choice. It just wouldn’t have worked. And for him. To be a school with a religious component. He needed that. As he experienced his family dissolving . .. He needed that.
I wasted so much time worrying about making the wrong choice. Trying to figure it all out. Control it. But you simply can not fit a square peg in a round hole..So you just have to take that square peg and learn how to live with it .. Even if it seems impossibly daunting. The thing is, we always seem to end up right where we are meant to be.
…whether we like it or not..
I do not like this. I do not like this. I do not forgive you for taking her.
I miss this face. Everyday I miss this face. Everyday i am mad..
When it came time for us to choose a preschool for Nicholas he wanted to be where sissy went. And watching him today I am wholly confident he was right where he was meant to be.
So for me? Pray that I can forgive myself. Pray that I can learn to accept this new life of mine. Pray that I can find the words to reach peoples hearts. Pray that I am proud of myself. Pray that I can move beyond the un-answerable “what ifs”..
.. pray i can find her in my dreams. 2.5 years its been. i pray every night i can find her in my dream..
Because those are the prayers I believe can be answered.
i know you are where you are supposed to be
i know
but i don’t like it.
i know i am where i am supposed to be.
but
i just wish we were supposed to be together.
…until there is a cure..
Thank you for continuing to share! I will always be praying! Xo, e
I wish I had the right words to encourage and comfort. So many people spend their whole lives trying to control. What you have gone through has taught you a lesson that many will never understand. We pray for you and your family. We pray for peace, for comfort, for your trust in God to grow. Jennifer is not forgotten. She continues to impact how we live.
I pray for you and your family, but I will chang my prayer to those. I also pray that a cure, or, at least, a better, safe treatment for DIPG comes from all of Unravel’s hard work, and Jennifer’s cells. ???????
My prayers are with you and your family, I know it must be hard, so sorry for your loss
Yep. You got it right I think. Prayers for all of you !
EVERYTIME time I see a dragonfly, EVERYTIME I hear A Thousand Years, EVERYTIME I turn a no into a yes for my girls,…I speak her name…I see her face…LOVE4JLK
Everything you said makes perfect sense. I think you might just be correct. I feel awful every time I get in touch with a family who has a child with DIPG…and after progression, I find my prayers are not for earthly healing (because we all know that that right now just isn’t going to happen), but rather I pray for comfort for the child who is dying…and strength and peace for the parents and siblings of that child.
I want so badly to pray for and receive a miracle for families in that situation, but after watching countless kids go down this path, I know it just won’t happen. It’s not “time” yet, because we still don’t have the cure.
All we can do is work and fight towards that goal…a cure. It may not be meant for now, but I know in my heart it will happen someday, as long as people continue to fight for it.
I’m glad you realize, deep down, that you are not at fault for losing Jennifer. You did protect her…care for her, and love her endlessly. That is all we can do for our kids. The rest is “fate”…what’s “meant” to happen.
It hurts…I understand the anger, though. I hate to admit that I will always be angry at God for taking my mother so suddenly from me, and ripping away the “heart” of our family. I pray He forgives my anger, because I can’t help it one bit.
So my prayer for you is for strength to carry on with your family in your “new normal”, the ability to still love life, although your heart and home are broken and scarred, and the ability to forgive yourself for the things your can not change.
This reminds me of one of the twelve steps….admitting that you are powerless. It can be hard to comprehend how realizing that we are powerless is actually healing, but it is.
Libby: As I reach retirement age it seems like everyone I know has been touched by some type of cancer. I know watching my sister die, that it is a horrible death for anyone to go through. I pray for strength and understanding every day. It’s so hard to admit and remember that God is in control. All I can say is we will reach that understanding some day. I believe they are with God and have left us behind to grieve our loss. I can imagine my sister is painting the heavenly skies bird shell blue, which was her favorite color. Hugs.
<3
Praying for you Libby, praying for a cure and praying for Jennifer to come to you in your dreams❤
I pray for all those things for you. And thank you for the reminder that these things are what I should pray for myself. This entry cut to the very core. Thank you. Thank you for your words and your wisdom and your strength. I pray you feel the support that surrounds you and that it continues to help you answer your own prayers.
Sending love.