This post is not for the faint of heart. (Which, unfortunately, includes ME at this very moment!)
I started writing on CaringBridge back in early 2008, when Gavin was just months old and very sick in the hospital. I created the CaringBridge page for the purpose of keeping family and friends in the loop about his health and progress. I found, quite by accident, that writing was helping me cope with being cooped up in a hospital room with my first born son... pumping day and night with people in and out of the room... missing my husband who would come every night after work and then go home so he could sleep before work again... sharing a room with other patients and their families that would be admitted and discharged, admitted and discharged... and sleeping/eating/sitting/pumping/writing/crying on a metal cot next to his metal crib. It was not easy - and writing about it helped me get through it.
Then we came home.
Gavin came home needing therapy - practically every day. He was on a feeding tube. Oxygen. He had severe reflux and would cry day and night - night and day. I continued writing on CaringBridge even though a few people told me I should stop. That CaringBridge was only for "patients" while they're in the hospital. (not true) My internal argument was that now I was the patient. My writing would continue, dammit, no matter what anyone said. Once again, it was helping me cope.
Then I was pregnant... Brian was born... life was hectic... I was juggling Gavin's many, many needs and an infant... and then a toddler... and then Brian's speech delay... and along the way, infertility and miscarriages and IVF and Darcy's death and therapy and more therapy and trying to keep things "normal" for everyone. I would write and write and write and, once again, it helped me cope. I wasn't writing for feedback (although I did receive some excellent tips from other special needs Moms along the way), but I got it anyway. And sometimes... it was not so nice. For example, I wrote about my idea of "Love Bombing" - not knowing that it was actually a real "thing." I had been noticing that Brian, at the time, had been acting up - something that was not normal for him. He was little and had no way of communicating what was really going on inside of his little mind and heart - so he used his behavior to try to tell us. I decided he needed a day devoted to him - a Love Bomb Day. That focusing just on him would show him that he was valued... important... and that we could have fun just the two of us. Once I instituted random "Love Bomb Days" - his behavior changed. And I enjoyed those days with Gavin, too. I got some heat for that on this blog... and in my email. Comments like, "Gee - I wish someone would take me out for the day and spoil me every time I whine and act up!" and "The way you spoil your children is insane." or "You're rewarding negative behavior!" What is Love Bombing? It's just time that you are 100% devoted to your child and have fun together. Where you say "yes" to everything (within reason, obviously). Ice cream before dinner? Sure! Want to play this game for the fortieth time? I'd love to! Want me to watch you bounce in a bounce house for an hour? Sign me up! I'm pretty sure they had entirely missed the point of "Love Bombing." Whatever. I moved on and I'm sure they did, too, to another blog.
So, today was one of those Love Bomb days. For no reason - it wasn't spurred on by anything. That's how it usually works around here. Every so often, for no good reason and spurred on by nothing, the boys would be surprised with a Love Bomb day with Mommy or Daddy. It is something we all love. Brian chose to go to his favorite place, "Arnold's Family Fun Center." This was one of Gavin's favorite places, too!
...we played a TON of video games and carnival like games...
...we did Duckpin Bowling and, when he kicked my butt, we celebrated his big win with a Hershey Kiss.
When he saw the big animal figures near the carousel, a memory was triggered for him. He said, "Mama - take my picture in the lion's mouth like you did for Gavin!"
So I gladly did.
Then... "Take my picture with the bear for Granny!"
So I did. Gladly.
We went to Target afterward because they sell these orange "push pops" (filled with orange sherbet) that Brian loves. And I let him pick out a toy. We had an awesome afternoon together.
So, when I came home to an email that brought me down from my "Brian high" - it was the one final push that brought down the entire house of cards. It was the last straw. My breaking point.
This is what it said...
< Kate, I'm very concerned about Brian's emotional well being. All day long you're posting on Facebook and all it is is Gavin. We hardly would know that you had another son. Don't you think he'll look back on this time and feel forgotten? Your readers want to get to know Brian and not just hear about Gavin. I'm sorry for your loss, but please think of your other son. >
Oh, did this make my blood boil. Typically I can write things off that don't apply to me or our family... I can chalk things up to people just not knowing the entire story. But today it pissed me off. I can't help it - I'm human. This particular person is not the first to make this kind of comment. There have been others... little comments under photos of Gavin and emails that were a little more subtle. And I'm sure, even after this journal entry, they will still arrive. Yet I will still continue to write tonight - hoping that I can get a message across to all of you.
Here is the deal. Gavin died. We were left in shock. And I was shocked to be pregnant. And we have Brian, who misses his brother terribly. But he's also four and grieves WAY differently than an adult. He's active and busy and talkative. My days are exhausting. I have been determined not to complain - at all - about my pregnancy. Mostly because I truly have nothing to complain about. But if you're wondering... I have suffered terribly with allergies this entire time. Constant congestion, feeling like I'm in a fog every day, blowing my nose, clearing my throat and having sinus headaches. I also have pretty bad (okay, really bad) sciatica which I always get. And at night? I have restless leg - another common pregnancy deal for me. I'm tired - but I can't be. I'm mothering Brian all day. I'm dropping him off and picking him up from Pre-School - overjoyed to see him. I'm playing with him and reading to him and turning on the TV at times for him so I can just... sit. I lay with him every single night at bedtime after a book (I never laid with him at bedtime until Gavin died) and we talk. He always wants to talk about Gavin and his feelings. I treasure this time. Brian is handling things so well and - quite frankly - we are handling him quite well. If you are new to the page or to my blog and are one of the ones wondering, "What about Brian?!?" - then I would urge you to read more. Go back to older posts. Get to know how we operate as a family. You'll see how much we dote on Brian - in the past and now.
For a while, Brian and I were going through the photos on the computer to choose to share on Facebook. He loved it. Know why? Because these were HIS memories, too! Many of the photos and videos I posted had him IN them. And many of the ones I posted were CHOSEN by him. He has been loving this walk down memory lane and laughing at his baby pictures and videos. Especially the ones of him and Gavin together. So, I was not ignoring Brian to sit on Facebook. And then I figured out how to schedule posts ahead of time - which is what I do now. The photos and videos are chosen the night before and I schedule them to automatically post every two hours from 8am to 8pm.
The Facebook Page has become a bit of a memorial page at the moment as I post these memories of Gavin until the end of his life. It just kind of happened that way. I still write about Brian on that page - when there's something I want to share that I don't write in my journal entries. Going through Gavin's life - just because - is important to me. And knowing that others are learning new tips and tricks that I picked up along the way - things that can help the "Gavins" in their lives - means so much to me. And I appreciate... SO much... the kind comments and the wonderful support.
Grieving publicly is a choice I have made - but it isn't up for dissection. If you read my blog posts... or if you knew our family... you would never think that Brian's needs - emotionally or otherwise - were neglected. And if you think that the amount of photos on my page reflect anything - the amount of attention he gets, favoritism, neglect - than we have other issues to discuss. As much as you shouldn't look at a photo and assume I'm a good housewife or a fashionista or even an "amazing" anything... don't assume you know the whole story if you DON'T see a photo.
Listen - Gavin is dead. Once I finish going through these pictures... I won't EVER have any other new ones to share. You can't begin to imagine how much that wrecks me. I took photos of the boys nearly every single day. I really need you to realize the gravity of this for me - when I get to April of 2013 in my photos... it's over. I will be at the end of Gavin's life. Just as I've always needed my writing to cope... I need to share his life in this way to cope. After I reach April 14th, 2013 - the day Gavin died, the day I turned 43 and the day we discovered Hope was in my womb - it will be over. And then, you will grow tired of seeing way too many photos of Brian and Hope. And I'll sit back and anticipate the emails that will say... "What about Gavin?"
Brian is great.
Hope is growing and kicking like crazy.
Ed and I are putting one foot in front of the other.
We are trying our best to honor Gavin in every way while balancing that with parenting Brian and making sure he feels loved and heard and important.
I am grieving out loud - which is not normal, I know. But this outlet ensures that I can leave it all here and then be "there" for Brian and Ed and Hope.
I hope that helps clear things up. Thank you for your compassionate understanding and seeing the pain through this long rant.