He's just the best brother. He knows her favorite things. He predicts her every move. He can find her tickle spots. He brings out the best laughs. He is tender and protective and so, so in love with her.
Every time I catch him doing something sweet for his little sister...helping her or playing with her or making her smile...
...I remind him,
"Brian, you know the way you're treating Hope right now? That reminds me of how Gavin used to treat you."
He loves to hear this. Every single time. He loves to be compared to Gavin - to think that he's living up to the high standards that Gavin set as his big brother.
I'm so grateful to see Brian and Hope's relationship grow and deepen.
They chase each other around the house - he plays "peek a boo" with her until she collapses in a fit of giggles - they sit in the tee pee together and play pretend games - and he loves to hug and kiss her before bedtime. Now that he's home for the summer, he likes to come in to her room when I'm nursing her before her nap. Each morning he'll make up a new lullaby to sing to her. Take a listen to this morning's song...
But there are days when I watch them together and my heart hurts. I can't help but wonder what Gavin and Brian's relationship would be like now.
I would love to see them chasing each other around the house or playing in the yard. I long to see Gavin's face light up, as it always did, the second Brian would walk into the room. I wish I knew what I should be mourning, exactly.
Exactly one month from today - on September 29th - we will mark Gavin's sixth birthday. The first birthday without him. Ed and I are not looking forward to it.
Gavin was always very easy to please. Put him in a room with something that plays music or lights up and he was happy. Put him in a room with Brian, his beloved little brother? He was even happier. He loved Brian so much.
I want so badly to do something special - something permanent - to honor Gavin's birthday. I had so many ideas swirling around in my head and I kept coming back to Brian. I am hoping that Gavin is watching me from Heaven and feeling so pleased that his brother was the inspiration for this birthday project.
None of us knew that the last time we would see Gavin smile... watch him play with toys in the playroom with Brian... hear him laugh... would be on the morning of April 10th, 2013. It is a miracle that I decided to take Gavin to the emergency room that afternoon - not even thinking that we were dealing with anything close to a real emergency. And it was a HUGE blessing that Miss Sara was with me so she could bring Brian into the waiting room. We couldn't have known that this would be one of the most traumatic days of Brian's life.
Since that day, Brian has consistently reminded me of one very important fact:
"Mama, remember that little room in the hospital when Gavin got sick? It didn't have enough toys."
Lucky for Brian, he had Miss Sara to occupy him. But she was very stressed, too. Brian has showed us the importance of toys to help children (and the adults that are with them) through very stressful times. And that is when it came to me...
We will re-do the children's waiting room at Paoli Hospital for Gavin's birthday.
I've been working on this behind the scenes for a little while now. I went to the hospital to meet with the nurse manager in the E.R. to look at the room (and Brian was definitely right about the lack of toys!) - and I have been working with the hospital to be sure that the items I chose met with their safety and infectious disease protocols. I am so excited to make this a reality.
I chose several of these items with Gavin and Brian in mind. Like the Sea Life Table and Pathfinder Panels - we all know how much Gavin loved the ocean. And the Springtime mirrors. I chose them to honor the Spring day that we lost Gavin... and were introduced to Hope. Brian loves mirrors - and I figured they would be great for infants and toddlers in the waiting room, too.
This is the hospital where Gavin was born and spent the first month of his life... the hospital where Brian was born and where he will meet his sister, Hope, this December. If I can make this a true reality, there will be a permanent plaque on the wall saying that this children's waiting room was made possible by our family and the Chasing Rainbows community in memory of Gavin and in honor of his little brother, Brian. Our hope is that as Brian gets older and understands more, he will realize that we heard him that day... that we cared about him that day... and we did something about it. We hope that as he grows up, he will be proud that there is a lasting legacy that he helped inspire... and, because of that, other children will find a little joy in that Emergency Room because of him.
Ed and I have contributed $600 to the project. $1,000 more will get us everything on my list. I would love to invite you to this "birthday party" by contributing $1.00 - $5.00 - $10.00 - or more. I chose to use "GoFundMe" in order to keep my PayPal account strictly dedicated to Gavin's Trust Project. If you click the link below, you can see the fundraising page and watch the donations as they come in (hopefully!). Or, you can click the badge with Gavin's photo at the top right side of this blog.
UPDATE!!! I never expected this, but through the middle of the night I not only met - but surpassed! - my $1,000 goal!! I thought asking for $1,000 was asking for a lot. I have decided to let the donations keep coming and use the money for MORE toys and the personalized plaque for the wall. I couldn't do all of this without you! Thank you to those who have donated already - who will donate - and even those who merely support us with your kind words and encouragement. Each gift is SO generous!! Thank you!!!
It started when Brian was a baby. He was six months old when we decided to start trying for another child. We still didn't know exactly what we were dealing with with Gavin (we never did find that out!), but we wanted to be sure that Brian had another sibling. My mind kept racing towards the future - the day that Ed and I were no longer here. I figured that Gavin would likely need care his entire life... and I didn't want Brian to feel alone in that. And I also worried that Brian would feel lonely - if Gavin never talked or walked. Boy, did we try for that other baby. The old fashioned way... pills... injections... we even made an attempt with donor eggs. Along the way we lost Darcy and many other babies who never made it to this Earth.
Giving up and moving on was a gut wrenching decision. But when I knew it was time to stop - I knew. And I felt pretty comfortable with that. I was proud to finally be strong enough to walk away and wrote about it in one of my personal favorite posts called "Reclaiming Me."
But I still had those pangs - mainly when I looked at Brian. As he progressed and Gavin trailed behind... as they started playing with completely different types of toys... I would worry. About Brian.
But now Gavin is dead.
And I was so, so wrong.
As I lay in bed each night with Brian and we go over Gavin's "death day" in detail before I turn out the lights.
As I sit on the swings with him and, on his request, push the invisible "angel Gavin" in his bucket swing.
As he says to me, "I miss Gavin's laugh the most." (So do I, buddy. So do I. Watch this little video and you will, too.)
As I watch him sleep in Gavin's bed.
As I well up with tears when he says, "Mama, remember when me and Gavin..." and recounts so many memories he has having fun with his big brother.
As I look in the rear view mirror when he says, "Mama - I miss Gavin sitting next to me. It's lonely back here."
As I hear him talk to Hope in my belly, which he has started to do, and he says "You have two big brothers - me and Gavin. Gavin died, but that's okay. I'll be your big brother and I'll tell you all about Gavin later."
As I watch... and listen... I realize.
I completely and totally... 100%... underestimated their relationship. I thought I got it. I knew they loved each other. I still thought another sibling would make things so much better.
It's a beautiful gift to watch Brian grieve in his own way for Gavin. I say it's a gift because Brian is so open to talking about his brother... his death... and his feelings. And I'm grateful that I'm here with him all the time to listen... to watch... and, quite frankly, to learn.
I could learn a lot about grieving from Brian.
On the way home from school today:
"Mama, I told my friend Aidan that I missed Gavin. And guess what he said? He said he missed Gavin, too. Wasn't that nice?"
"Yeah, Brian... that was really nice of him. I think a lot of people miss Gavin. But I bet he misses YOU the most."
"Yeah. I know he does."
Outside playing before lunch:
"Mama! Take a picture of me on the bike so you can show Daddy. He'll be so proud of me!"
Brian has had ZERO interest in riding a bike - any bike. We've had this tricycle in the basement - which he totally outgrew after never riding it - but he wanted me to bring it up. He's VERY proud of himself for trying it out.
"Can you mail that picture to Heaven's House? I want Gavin to see it, too. He'll be proud of me, too."
"Yes he will, Brian!! I bet he's watching you right now and jumping up and down with joy!!"
After lunch:
"Mama, I'm ready to take a rest now."
"Ummm..... okay, Bri. That's a surprise!" I've not put him down for a nap for weeks.
"I want to go play with Gavin in his bed."
Gulp.
While zipping him into Gavin's bed at his request:
"Mama? Why is everyone sad that Gavin died?"
"Well, it's sad when people die. And it's especially sad when you love that person so, so much like we love Gavin. Sometimes Mommy cries a lot because I miss Gavin so much. And sometimes Daddy cries a lot because he misses him, too. Do you cry?"
"No. I don't cry. But I miss Gavin. Does Daddy cry because he can't tickle Gavin anymore?"
"I think that's part of it, buddy. Daddy and Gavin used to love playing the tickle game, didn't they?"
"Mama?"
"Yes, Brian?"
"It's okay. God is tickling Gavin in Heaven's House. I can hear Gavin laughing from here."
"You can? You are SO LUCKY!! I wish I could hear Gavin laughing in Heaven!!!!!!!!!"
"You can, silly! You just have to LISTEN!!"
"You're right, Brian. That is good advice."
"What's advice?"
~~~~~~~~~~~~~~~~~~
This morning, after dropping Brian off at preschool, I nervously drove to the doctor. I am so lucky that the Fertility Clinic that we went to for years is allowing me to come in for early monitoring - even though I haven't been a patient there in over a year. It's such a relief to know everything is okay. And today, everything was okay. I had another glimpse of Project Hope. Here is a video where you can see the strong heartbeat.
It was a huge relief.
And if you're looking at the video and wondering if there are two babies in there... there aren't. The other "thing" is the yolk sac. Just one baby.
~~~~~~~~~~~~~~~~~~~
I (with great anxiety) feel like I need to (reluctantly) address something that has been (true story) happening at least ten (usually more) times a day.
I am asked (a lot) if I will share people's Facebook pages, causes, fundraisers, blogs, businesses and more. I'm asked to place things on my blog. I'm asked to solicit support on my FaceBook page. I'm asked to "Like" others pages. It is overwhelming me... and I want to (nervously, but so, so sincerely) explain why.
I am a people pleaser and I really, really hate to say no to people. I do. I also love to help people - but am realizing, sadly, that I can't help everyone. If I say yes to one person... I have to say yes to every person. Soon, readers who come to see what's going on with Brian... or read about Gavin... will be inundated with my promotions for other people's families, causes, businesses, fundraisers... do you see what I'm trying to say? I decided to create a "policy" of sorts to respectfully say no to everyone. Because I can't say yes to everyone, which is my nature.
I also can't give you money. Or ship you Gavin's things. Or his clothes. Or give you my phone number. (Yes, all of these things have been asked of me.)
Please don't look me up and call my home... or stop by. It's just not appropriate.
I don't like doing this - I hate it, actually. I realize that my page has suddenly exploded... and I get that being on my page right now might bring more attention to yours. But if I'm being really honest, during this time (or any time, really) when I'm dealing with the death of my son - it makes me feel very used. I don't like that feeling. I do, however, like you. And I'm not looking to hurt anyone's feelings. So, if you'll stop asking... then I won't suffer from anxiety trying to come up with a response to you that won't hurt your feelings. Because I really, really don't want to hurt anyone's feelings. So... can we agree on that?
I really loved when my Chasing Rainbows Facebook Page wall was filled with the wonderful things people were doing in Gavin's memory - random acts of kindness, volunteering, etc. It would make me so happy to see more of that and less requests of me. I am tired... and I can't afford to expend extra energy on fielding multiple (and I mean big time multiple) emails a day asking for more more more.
Brian announced today that he wanted to sleep in his brother's bed tonight. My heart skipped a beat. Actually, my heart has been skipping many beats and pounding hard and fast and feeling like it's going to explode out of my chest twenty four hours a day... but that's my constant anxiety.
I digress...
So, tonight after his bath, Brian and I started the difficult task of transporting all of his Angry Birds... and his "guys"... and his special blue blanket that matched Gavin's hospital blanket... and his Penguin that illuminates stars on the ceiling and he lovingly placed them in his brother's bed. He even asked for the special pillow case that he got to pick out in Gavin's hospital room to cover his pillow.
Ed and I sat on either side of him, as we've done since we came home from the hospital, and I read him a very special book. Brian's teacher (that I could explain with about 100 adjectives like amazing and kind...) adapted the book "Remembering Crystal" by Sebastian Loth into "Remembering Gavin."
We have read it, on Brian's request, every night. Somehow I am able to get through it each time... even while hearing Ed sniffling on the other side.
What Laura did for us - and for Brian - is indescribable. I believe this book is helping Brian process that Gavin is really gone. File her gift idea in the back of your mind. If someone in your life loses a child and leaves behind a young sibling, THIS is what you should send them. This gift means so much to us. I was so determined to share it with all of you that it took me FOUR takes before I could do it without crying...
After the book was over and we were about to cover him with his special "Gavin blankie," he suddenly remembered that he forgot one important thing in his room. The heart that hangs from the "invisible string" on his closet door. He ran to his room... brought it back... hung it on Gavin's closet door... and our hearts skipped a beat again as we heard him say, "Good night Gavin," as he gently tugged the string.
Please keep us in your thoughts and prayers. Managing Brian's grief is our biggest priority - but navigating our grief at the same time can be very challenging.
Gavin and I have been home together all week, but today I took him to school for an evaluation. He has been slowly getting evaluated by everyone from Speech therapists to Psychologists to Occupational Therapists... and today was his Physical Therapy evaluation. They are all evaluating him to prepare for the upcoming IEP that will follow him into... gulp... Kindergarten.
I dressed him in his Sunday best for what was a full circle moment for the two of us...
Gavin's evaluation was done by his very first therapist EVER. Miss Patty (on the right) came to our house shortly after Gavin came home from the NICU and she was with us for three years! And soon, she will be Gavin's physical therapist when he starts Kindergarten in the Fall. Miss Wendy and Miss Patty both work at the Kindergarten Center - which means that if Patty has any questions, Wendy is right there!! How lucky for Gavin!!
It didn't take long for Gavin and Miss Patty to fall in love again.
Some things just never change.
When I started thinking about Gavin's transition to Kindergarten, I really saw him travelling to school in his wheelchair - just as he does now. But Patty and I both agreed that the wheelchair can be left at home. I want him to walk as much as possible this year - and that includes up the driveway to the bus and off the bus into school. So I'll be asking the bus company for a carseat. How awesome is that??? And how quickly things change these days for our little superhero. He is making progress faster than I can type!
In other news, I'm trying to get back into the piano. I've been a piano player since the second grade... but I really haven't played since Gavin was born. I used to teach piano to kids in the house before he was born, but it just went by the wayside. Yesterday I pulled a book out of the piano stool and started playing... and suddenly I was the pied piper. Gavin and Brian both came in to listen quietly - and soon Brian was asking if he could "have a turn."
I often wondered if Brian would let me teach him piano. Sometimes parents don't make the best teachers. But Brian is showing so much interest and patience, it may just happen for the two of us!! I'm cautiously optimistic.
More and more I realize that Brian is developing a huge and tender heart. Lately, when I pick him up from school, he has been coming out holding the hand of a classmate. In the past, he'd come running to me when he saw me. Now, he makes me wait until he safely deposits his friends at their Mom's car or their bus. And THEN he comes running to me. I love this!!
He's also gotten a lot closer to Gavin. He looks for ways to play with him, include him, help him and read or sing to him. Today he wanted to play "Firemen" with his big brother...
...and even turned into a therapist at one point. Here he was instructing Gavin to "touch hat." "This is a firehat, Gavin! Can you touch hat? Touch hat, Gavin. You can do it!"
The funniest moment was when he called me into the room to take their picture. "Here Mama - we'll pose for you!!"
You can't "force" a relationship to happen. My greatest wish and my most fervent prayer is that Gavin and Brian will always have an unbreakable bond. That Gavin won't get "lost in the shuffle" as Brian grows and gets busier and makes friends. So, to me, seeing these moments is so emotional. It just makes me so happy to watch my boys interact. And it makes me happy to see that Gavin has had such an influence on how Brian views the world.
I feel so lucky to be Brian's Mommy.
I likely won't be on the blog until after the weekend! My wonderful nephew, Dan, is getting married on Saturday. I'm already starting to cry so it should be a long few days... trust me. I am THAT Aunt. I can already see him rolling his eyes at me. *wink*
This morning, while Brian was at school, Gavin and I got down to business in day two of "Mommy Boot Camp!" We worked on the communication cards again... spent some time coloring (reluctantly) at the art table... and I ditched the crawling down the stairs idea and started teaching him to WALK down. Yes, walk. And do you know what? He actually handled that better. Once Sara gets back, I'll get it on video. It's definitely something you can't step back and videotape on your own!!
I took a few videos of Gavin walking, too, so you can see his progress. He's doing such a great job. Believe it or not, he's an even better walker in bare feet or socks with treads. But take a look at these two videos...
When it turned 11:15 and I announced, "It's time to go pick up Brian from school!" I heard a big squeal. Gavin was so excited that his little brother would soon be home!
Then, in a moment I can only call "inspired by Martha Stewart on Pinterest," I created a piece of art I called a "sealed circle fluffernutter sandwich" for Brian. Would you like my recipe?
Get peanut butter. As long as your child isn't allergic. If so, find something else. Like fake peanut butter.
Get Fluff. Or use what I use: Gluten Free Ricemellow.
Apply both liberally...because that's how you're supposed to do it. You can't have too much peanut butter OR fake fluff.
Take a small circle container - press down hard - cut around the container - and you have a sandwich that won't "ooze" and drive your particular kid nuts (so to speak)that doesn't appreciate sticky fake fluff fingers!
Be honest - you're impressed, aren't you? Could I make it on Pinterest?? Should I send this to Martha Stewart??
*wink*
Brian definitely approves!
As we sat at the table eating lunch, Brian said, "Mama? Are we going to skip our rest today?" with a cute little tilted head. He asks this question every day. Sometimes, the answer is yes. But today I said, "Not today, buddy. Mommy's not feeling good. I think we'll ALL take a rest." He thought for a few seconds and then slapped his hand on the table, "I know! How about you go take a rest and I'll take care of Gavin. Then when you wake up, I'll have lots of water and tea down here for you to drink. You need to drink a lot to get better."
He may have been angling to get out of his rest, but it sure touched my heart. I love this child.
We did all take that rest, and when we woke up - as promised - Brian promptly filled up a cup of water at the refrigerator and delivered it to me.
The rest of the afternoon, we just played...and read books...and painted. I took a video of Gavin and Brian 'playing' together that I wanted to share. It's a little long (5 minutes!) but it gives you a great idea of how obsessed Gavin is with his little brother. It shows how excited he gets - how much he laughs - and how he seems to understand some of the things he's told. If you can spare a few minutes, I think watching this will make you happy!!
We ended the day in a non-typical way. Usually, the boys and I have a dance party in the kitchen before dinner. Today I decided - with my head pounding and feeling miserable - I felt more like a robot. So robots we were.
Last night I went to bed early with one thing on my mind - my plans for Gavin this week. With Miss Sara away all week, I made the decision to keep Gavin home with me. I am so grateful that I've been able to have a helper since Gavin was a baby, but I also relish the time alone when it's just the three of us. And I am really looking forward to mornings alone with Gavin while Brian is at school. I made up a schedule for each day and declared the week "Mommy Boot Camp!"
My first order of business was to make some new communication cards. I bought this Laminating machine a couple years ago - and it has more than paid for itself. It's so easy to make picture cards for Gavin!
I placed the two books (his favorites!) in the clear bin with the card taped to the top. He looked at it for about ten seconds...
Looked up as if to say, "Let me get this straight..."
...and then proceeded to touch the picture...
...pull off the lid himself...
...and pull out his book! He was quite pleased with himself. We did this several times throughout the morning. He did a great job! I also did it with other toys - had him touch the picture card to "request" it.
The two of us had a great time. Well, except when we got to the physical therapy part of my schedule. Walking for therapy doesn't even seem necessary anymore - at least not at home! He walks all over the house with increasing confidence. I decided to push Gavin to crawl down the stairs. It's something he always resists. He can crawl up...he can walk up...he can get himself out of his bed by going backwards...but he just won't crawl down the stairs. You put him on the stairs to go down...and he just wants to go up. So that wasn't Gavin's favorite part of the morning. But a Mom's gotta do what a Mom's gotta do.
I think his favorite part of the whole day was picking Brian up from school. He love his little brother so much!! On the way home, I told Brian about our morning and briefly shared the communication card experiment. As soon as he got his coat and shoes off, he wanted to "do therapy" with Gavin. Without me having to show him what I did, he instinctively (and sweetly) put the box in front of his brother and said, "Okay, Gavin, touch this picture to tell me you want your books! Go ahead, Gavin. You can do it!"
And then he waited. And waited. Reminding Gavin every ten seconds that he was still waiting for him to touch the picture. I went back and forth between wanting to cry and wanting to laugh! At one point, Brian even took Gavin's hand and tried to force him to touch the darn picture...
And just when he had all about given up hope - Gavin touched the picture. And no one was happier and more encouraging than Brian.
Brian took a nap this afternoon while Gavin and I spent time reading in our "book nook" - or "book fort" I should say! It's a pretty awesome hangout!
But, once again, I was chopped liver once Brian came down from his rest. These two boys love to hang out together lately...and nothing makes me happier. I couldn't capture it on video, but Brian was reading and singing to Gavin while they were in there together. Gavin was so happy!
Unfortunately, I woke up feeling sick this morning and I'm hoping it doesn't lead to anything too bad. This weekend is my nephew's wedding out of state - I can NOT be sick for that!! And, of course, I don't want the boys to catch whatever I have. I hope it doesn't get in the way of my "Mommy Boot Camp!" I have big plans this week for my little superhero and "ain't nobody got time" for being sick!!
p.s.... Don't forget to enter my Mattel giveaways! There's an entry to win a deluxe basket filled with toys in the "Save The Bunny Giveaway" post - and an extra giveaway form on the Chasing Rainbows Facebook Page! You can't win - for your child, your niece or nephew, your grandchild, your godchild - whoever - if you don't enter!!
