bittersweet

I’ve been hoping to talk to another particular cancer mom for awhile now. She is somebody who also writes and I have been told since the beginning I should reach out to.. but it took me time to be ready for that. Then we decided we were open to another baby. I knew it was time.

We got the chance to speak today. Briefly and un-smoothly.. because as much as I desperately needed this conversation. To talk to somebody that understands the one word that truly describes this pregnancy.. my kids had other needs. I never figured out what they were but they were all 3 yelling and fighting .. My apologies to Maya.. but I hope we can speak again.

I don’t know whats going on but Jonathan’s struggle is intense right now. Its taken leaps forward. I had a solo counseling session with our grief/marriage counselor this week and nearly the whole thing revolved around Jonathan. He has struggled before Jennifer got sick and died. This just threw a whole new wrench in it.

I cannot fail him too.

But I am scared I am. He is so very sensitive and so very volatile. A difficult combination for me to handle .. I cannot even imagine how hard it is in his little head. He tries to tell me. Tries to explain how he wants to be different but doesn’t know how.

Charlotte was fussy so he took her outside while I prepared dinner and rode her around on his tricycle. Truly one of the most loving humans I have ever met .
a few night ago..Charlotte was fussy so he took her outside while I prepared dinner and rode her around on his tricycle. Truly one of the most loving humans I have ever met .

I feel helpless.

I have felt this before. And then..then I was truly helpless.. there is no cure. No real help for kids with DIPG. So I know how dark and ugly helpless can be. I will not allow that to happen to my family again.

I know its not like that for him. We just both lack the tools he needs. So I will find them. Come hell or high water I will help my boy. We are looking for a more specialized therapist for him.. well for us. Because I know its him and me in this together. We have to both be taught how to do this. Thankfully we both want to learn.

I just ache though. And I get tired. I get worn down. And then I question myself. My parenting. My ability to do this all over again.. And I am scared.

That word. .. that word I hoped Maya would know. .. bittersweet.

She did. I said it.. a little nervously at first and she emphatically and genuinely agreed. I felt immediate relief.

She just understood how different this pregnancy is. In so many ways. The connection with our lost children. The fear of other peoples comments. The fears of.. well the truths you learn through child loss. That their little lives are not promised to us. And how much it is to balance it all. . surviving kids.. one in heaven and a baby on the way or in your arms and a non profit you are totally dedicated to.

I just needed somebody that got that. Because I love this baby. I want this baby. But it is oh so bittersweet.

Not much in life jams me up. But when I get like this… when my fear of failure gets so big.. gets so loud. .. I start to freeze up. But I can’t. Too much depends on me. So I will fight and I will share .. because this action…the simple act of writing and getting it out helps keep the cogs in me spinning. ..

Right now it just all feels on the verge. Of everything just falling apart. Every cramp and twinge with our dandelion wish scares me. Seeing Jonathan’s hurt and rage so big scares me. . I wonder if that will be my life now. Walking on a very sharp edge always afraid of leaning too far one way and toppling over.

i miss you sissy miss

and I am so scared right now

i wish you were here

i just really really

wish you were here.

bittersweet3..until there is a cure..

15 Responses to “bittersweet”

  1. your children are so beautiful. it can’t help but be bittersweet. Jonathan will move thru this stage with your help because you give them all … all of you….

  2. If you get a chance look in your local community for the various groups in the area that are for families who have lost or is losing a family member to cancer or other causes-they usually have special activity for siblings where they can do projects or have talks with other kids and counselors to help them understand what happened and how to handle their grief so that they don’t get in trouble at home and school and know it was not their fault and that can maybe pair them up with someone maybe another child who has been in the same situation and is a little further along in his recovery and also do the same for the parents and grandparents and others in the family who need it. It is particularly cruel when it is a child’s death and may require a longer time in this therapy. I had a family of friends when I was still in high school who had 13 kids-it seemed they were cursed-before I had graduated they lost 1 at 7 from drowning, 1 killed by a school locker crushing his head,a 3rd was a navy test pilot and 1 girl in childbirth. That family seemed to always have a terrible situation-The wife died of cancer and the the father and stepmom were killed in a car accident-the entire towns and schools closed at each death because the entire family was involved in so many activities and schools and churches that it was almost automatically a followup. This is just another example and hopefully you have the same great quality neighbors and friends. So sorry about your loss-I attended services of many of other peoples kids but did not suffer that agony until losing an adored grandfather, then in 1993 My dad, 2007 my so loved Mother , then of my 10 siblings in 2011 1 really special sister died in agony from stage 4 ovarian cancer that after major surgery, chemo and all-could not eat for her last 45 days,lived on water and ice for her last 1o days and she died at just 55 -a few mos later a brother died at 58 from head trauma after a fall and not being found for several days and the worst part was not being able to visit or call him or attend the services because of the expenses involved in our sister’s death. Please let me know if there is so way to help you-you have the most beautiful kids and you are a great parent. The kids will help each other and you and in time they will be able to accept the loss-maybe you can give each of them a special item that belonged to your daughter that they can hold onto and ‘talk to” and hold onto and let them talk about her whenever they need to and maybe they can talk to a person that they are comfortable with so they don’t worry about upsetting you. Please write if I can help. There are also more sites where you can share your grief with other parents who may have lost a child to some other disease or accident and also go the the American Cancer Society who can give you other sources to help all of you.

  3. Libby, Jennifer is with you in spirit something you two will always have together that speciaI Bond.. I know it easy for us to tell you things and you can absorb it or Just let it roll by, but in the long run you have more of jennifer in you then you know, the way I see it is jennifers work has helped you again with your precious bundle of joy your carrying, and she will be with you every step of the way. Im so happy for you and your family ..big hugs

  4. There are those warm eyes again! <3

    I imagine the feeling would be bittersweet. I think it would be easy for an outsider to sit back and wonder if a parent is trying to fill a void their child left by having another. But having followed Ronan and Maya (and now your family) it’s clear to see that only a parent who has suffered such a great loss would truly understand the inability to even think that way. I don’t know if that makes sense; but having read Maya's blog and yours it’s just clear that you both are totally incapable of thinking that way because only a mother who has lost a child really knows how completely impossible it is to replace one child with another. It’s easy to say so when all your children are living that, 'oh I know my children aren’t replaceable' but you don’t fully understand the weight of those words until you've lost a child. At least that’s my measly opinion on it.

    I know this baby won’t replace Jennifer or make the pain all just disappear. But I also know it will bring a new level of joy to your family, and for that I am thankful for this extra gift Jennifer has given you. I 100% believe that she has played a part in you wanting another baby, getting pregnant, and helping you grow and shape this child. Love to you, Libby and sending all my extra strength to poor Jonathan.

  5. Your family is held in all of our hearts everyday. This weekend while watching the live stream of THON (Penn State), I heard a couple introduce themselves as “angel parents” when referring to the child they lost to childhood cancer. You may have heard it before, but I hadn’t. It struck me.

    I don’t feel at all competent to give any suggestions (now the big “but”) our son did struggle at that age without any of the reasons Jonathan has. We did enroll him in a mixed martial arts program that centered on ways to calm yourself and feel in control of your feelings when they felt out of control. It also helped me since I watched the class to use some of those tools to help him at home. He still struggles with anxiety but has used the multiple tools he’s learned over the years to keep it under his control. You have many more qualified people to help you on this path so just take this for what’s it’s worth. Hugs to all of you!

  6. You will not fail any of your babies, Libby. You stay too close to the truth. Your will is too strong. And they will know how much you love them.

  7. I’m so glad you connected with Maya. I love her and see so much of you in her and her in you. You both are amazingly strong women. Lots of love to you Libby

  8. Have faith in yourself. There is no perfect way to parent. Just do your best. Forgive others as forgive yourself too were not made to be perfect. Love. And let God handle the rest. Trust the Lord your God with all your heart and lean not in your own understanding. I don’t understand his ways but know I have felt his comfort in my grief. I pray God may offer you sight and understanding through his eyes to comfort you. I know Jennifer walks with you from your stories. I don’t know how it is possible but know there is no coincidence that we indeed walk with angels your angel is Jennifer. Follow your heart. Let her lead you …

  9. Maya is who first introduced me to this awful world of kids with cancer…and she’s an amazing lady. I have learned so much from her and continue to do so. I’m glad you are able to talk to people who get it though I wish from the bottom of my heart neither of you did.

  10. Sending ardent energy towards finding a good person for Jonathan to talk to. His special vulnerable soul will find a way to triumph. He’s a special young man.
    I love how the photos echo with a sister reaching out an arm from behind.
    Most heartfelt congratulations on your bittersweet news–you will now be a lovely family of seven. You’ll be like a Kranz Week. 🙂 <3

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