inhale and exhale

September marks the start of pediatric cancer awareness month.. I feel like I should be writing all about it. The ways to be involved. To not JUST be sorry but to be active.. but I can’t.. because I am selfish… and I am fucking struggling.

Because the end of August and September seems to mark for me the hints of what’s to come. Soon it will be 3 years since her first symptom appeared.. then 3 years since her diagnosis.. Followed up with holiday after holiday, all now left to fight to survive and find the light again while under the shadow of Jennifer’s death. So many losses ..

That first dr appointment when my worst thought was her getting glasses.
That first dr appointment when my worst thought was her getting glasses.

isn’t is supposed to be getting easier.. but I know. I know and I dread.. 

I dread Christmas now.. my first gift stolen from me..
I dread Christmas now.. my first gift stolen from me..

I am heavy. I am full. I have been feeling like I am on the verge .. almost constantly. Sitting with my living loves, snuggled on the couch I weep. Softly and quietly into their hair. If they notice I just remind them I love them.. If that doesn’t appease them.. I tell them I am having a “sad sissy day” .. I get a hug or a kiss and what I need most. .. understanding. They have them too.. so they allow them. They accept them.. and me.

I just can’t believe this is my life.

So much has changed in the last few weeks. And every change is unnerving .. These changes seems to force my eyes to open to a truth.. a reality I just don’t want to face. It exhausts me.. but also seems to make sleep elusive.

Jonathan started first grade. .. Even though he has a sister born nearly 2 years before him this is a new experience for me. First grade. ..

i miss your voice. i watch videos and want to desperately make them not stop playing. i want to fall into the screen and back to you

Nicholas turned 5. And he is struggling again with Jonathan being at school. Asking everyday if its a short day for his brother. His favorite gift was Jonathan staying home from school on his birthday. Its the one thing he most sincerely wanted..

well.. probably the second huh?.. but I couldn’t give him you. 

such a mix of personalities this picture is..But its Nicholas that steals my attention in it.. His nerves and fear palpable over his brother going back to school.. That school. The one that he still feels stole his sister.
such a mix of personalities this picture is..But its Nicholas that steals my attention in it.. His nerves and fear palpable over his brother going back to school.. That school. The one that he still feels stole his sister.

 

Bridgette turned one. No longer a baby. She is a lot of work, but worth every moment of it. I just wish I could absorb it more. This sacred time.. But my mind is broken.. It just can’t seem to hold onto new memories very well..

i think part of me still refuses to accept that you are gone

Early this morning I was feeding and rocking Bridgette in the dark. I couldn’t see her .. but she reached up and grabbed my hands and rubbed them. .. And her hands reminded me so much of Jennifer’s.. the way her fingers felt in mine.. long, thin and powerful.

I took a deep breath and just embraced the wave of emotion that followed.  I rocked and cried. ..Missing one daughter and so grateful for the this one..

I think that one moment really encompasses it all for me right now. I am overwhelmed lately.  With a deep and palpable sadness .. missing my daughter with my everything..  And simultaneously overwhelmed with a profound and powerful love for my surviving children..

i inhale for them

i always will.

but you.

you are still my exhale.

forever until its my last.

1-35

…until there is a cure..

11 Responses to “inhale and exhale”

  1. Such powerful writing, so many powerful emotions. Am thinking of your family, of Jennifer, as this year turns to Fall and the anniversaries and holidays make your already difficult road, rougher.
    I notice there are fewer comments now, than 2 years ago, I myself haven’t commented in a long time. But I would like say that people are still here, still reading, still thinking of you and still praying for you, Jennifer, and the rest of your family. God bless.

  2. Sending you so much love. I truly wish I could wave a magic wand and take your heartbreak away…bring Jennifer back to you, where she belongs. I haven’t lost a child, but I’m very familiar with grief. I lost my mother 3 years ago yesterday…grief doesn’t get easier, it evolves. Like waves in the ocean…ebbing and flowing, beating you up as you stand helplessly near the shore, struggling not to drown.

    I am so sorry that this is your life now. It absolutely should not be this way…6 year olds are supposed to be tucked in bed at night, not buried in the cemetery. It doesn’t make sense. I’ve followed your blog since January 2014…after all this time I still haven’t come to terms with Jennifer being gone, and I’ve never even met you or her…I don’t think it is possible to “come to terms” with the death of a young child.

    Please do not guilt yourself over not spreading “enough awareness” in September. You have every right to be silent…you spread the glitter every day of your life. It shouldn’t be only on the shoulders of those who have lost their child…everyone should promote awareness. You have the most difficult profession in the world: parenting a child who is in Heaven. Please go easy on yourself. You have already been tortured enough, and for that I am eternally sorry…and I promise to not just be sorry, but also be active.

  3. Such a heartbreaking post💔 I will continue to honor Jennifer and spread awareness especially throughout this month. #fluttertounravelpediatricancer

  4. I’m with Karin. I noticed the decrease in comments, too. I don’t comment as much myself (perhaps because I know my words won’t lessen the pain that you feel) but I want you to know that I’m still reading and following and passing along the stats on pediatric cancer/funding (lack thereof) and ways to give time, money, etc. We are all still here–virtually holding your hand every step of the way. Until there is a cure…..

  5. However many people are still reading your posts doesn’t really matter. They’re still powerful messages of love and loss, and you still have an army of supporters behind you and your family. t’m still here in faraway New Zealand – still reading, still supporting, still remembering Jennifer. Until there is a cure. xx

  6. I just found you. Lost my nephew in March. Your writing brought me to tears… again. Your imagery of your children being your inhale, and Jennifer being your exhale… It’s so beautiful and powerful. Thank you.

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