Re-Gifting from Robbie’s Closet

Robbie’s keyboard went to his sister Ruth. She has it set up and ready to play. Robbie liked to compose music and wrote several songs.

Most of his clothes went to a friend that has a son the same size. His books went to friends and some were donated to the library.

I still have cameras, his Pokemon collection from when he was younger, and several misc items yet to find a home. I also need to find a spot for all his medical equipment and sell his good bike.

Everything has memories as I give them away, but are no longer being used and would be crazy to try to keep.

Visiting the Butterfly Center and Marfan Syndrome

I met one of Robbie’s sweet friends at the Butterfly Center yesterday. She is in Houston for the Marfan Syndrome conference. Robbie was really looking forward to attending the conference and seeing his friends this summer. It is amazing how many lives that Robbie has touched. He may have been frequently isolated the past 4 years due to cancer, but he kept in contact with his friends and supported them online. It was good to talk with someone that knew Robbie so well and wasn’t bothered by my tears as we talked about him, since she was also in tears. Another one of Robbie’s sloths has found a home.

If you are interested in finding out more about Marfan syndrome, go to their website. https://www.marfan.org. If you are near Houston, their conference starts this evening and you can still sign up. It is the greatest group of people that you will ever meet. We actually thought about still attending to see everyone, but decided it would be too difficult without Robbie. If you missed my earlier posts, Robbie had Marfan Syndrome.

Robbie used to be on their website. ❤

I just checked and there is still a small picture of Robbie on their website on this page half way down. https://www.marfan.org/about

July is Bereaved Parents Awareness Month

It is bereaved Parents Awareness Month. There are so many things that I wasn’t aware of before we lost Robbie. I only knew the grief of losing my parents and grandparents. Losing Robbie is a grief is that is impossible to put into words. July is our 5th month without Robbie. I miss him so much. ❤

Below is a blog post from another blogger that lost her son. She does a good job at explaining the grief of losing a child.

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  (Link to her full post https://abedformyheart.com/7-things-since-loss-of-child/)

7 Things I’ve Learned Since the Loss of My Child

October 31,2015

Blog Post by Angela Miller

“…Child loss is a loss like no other. One often misunderstood by many. If you love a bereaved parent or know someone who does, remember that even his or her “good” days are harder than you could ever imagine…

1). Love never dies.

There will never come a day, hour, minute or second I stop loving or thinking about my son. Just as parents of living children unconditionally love their children always and forever, so do bereaved parents. I want to say and hear his name just the same as non-bereaved parents do…

I love my child just as much as you love yours– the only difference is mine lives in heaven…  

2). Bereaved parents share an unspeakable bond.

In my seven years navigating the world as a bereaved parent, I am continually struck by the power of the bond between bereaved parents…

3). I will grieve for a lifetime.

Period. The end. There is no “moving on,” or “getting over it.” There is no bow, no fix, no solution to my heartache. There is no end to the ways I will grieve and for how long I will grieve. There is no glue for my broken heart, no exilir for my pain, no going back in time. For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time where I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family.

I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime. Every missed birthday, holiday, milestone– should-be back-to-school school years and graduations; weddings that will never be; grandchildren that should have been but will never be born– an entire generation of people are irrevocably altered forever.

This is why grief lasts forever. The ripple effect lasts forever….

4). It’s a club I can never leave, but is filled with the most shining souls I’ve ever known...

5). The empty chair/room/space never becomes less empty.

Empty chair, empty room, empty space in every family picture. Empty, vacant, forever gone for this lifetime. Empty spaces that should be full, everywhere we go. There is and will always be a missing space in our lives, our families, a forever-hole-in-our-hearts. Time does not make the space less empty….

6). No matter how long it’s been, holidays never become easier without my son.

Never, ever. Have you ever wondered why every holiday season is like torture for a bereaved parent? Even if it’s been 5, 10, or 25 years later? It’s because they really, truly are. Imagine if you had to live every holiday without one or more of your precious children. Imagine how that might feel for you. It would be easier to lose an arm, a leg or two– anything— than to live without your flesh and blood, without the beat of your heart. Almost anything would be easier than living without one of more of your precious children. That is why holidays are always and forever hard for bereaved parents…..

7). Because I know deep sorrow, I also know unspeakable joy.

Though I will grieve the death of my son forever… I live from a deeper place. I love deeper still. Because I grieve I also know a joy like no other…”

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~When a parent dies, you lose your past; when a child dies, you lose your future. – Anonymous~

Grief Steps

I was given a couple suggestions from my grief counselor. One is to start working out and the other is to join a grief support group. We joined a gym today. I also sent a message to a church that runs a grief support group called GriefShare to see if we can join their group. I would rather just hide out in my house, so we will see if I can take the next step and show up! I miss Robbie so much. ❤

Setting Goals

Backing up Picture Files

I have started setting goals each day of what I should try to accomplish. I continue to struggle with focus, since loosing Robbie. An entire day can go by without completing anything.

My ears haven’t stopped lightly ringing. I also keep thinking I am still in February. It is so strange. Just today when I was backing up my picture files, I saw February 2019 and thought…great I’m caught up. A few minutes later, it dawned on me that it is July. It doesn’t make any sense, but it has happened repeatedly since February. The last few months have been a blur.

Back in Houston

We arrived back in Houston Saturday evening. It is difficult to walk into our house and not have Robbie here too. We are thankful for our trip to WI and everyone that continues to support us as we navigate moving forward with Robbie in our hearts.

Milwaukee Zoo

Sloth Exhibit Sign

Sloth hiding in his box

Donor Sign

Robbie’s Name

While we were in Wisconsin, we stopped at the Milwaukee Zoo. His OT at MD Anderson is from Wisconsin and her family donated to the sloth at the zoo. Robbie’s name is listed among the other animal sponsors in the welcome building. Robbie was only 6 on our last trip to the Milwaukee Zoo.

Robbie, Cousin Chris, Ruth, & Lynn

My former college roommate met us there. It was great to see each other again.