The Cool Heaven Trick...

I'm back.

After a short break from writing... I am back.  I needed the time.  Actually, I needed some time with my husband... just us... and that's just what we did.  

Miss Katja came over Saturday morning, thrilling Brian and relieving us.  Ed and I took off for a nice overnight in a hotel.  I even got my hair done for the occasion - which was totally pampering.  And then I enjoyed a nice dinner with my handsome husband.

Ed even had a surprise up his sleeve.  He shocked me with an anniversary band.  "To honor everything you've been through as a Mom... and to honor Hope," he told me.  And, not so coincidentally, the ring had FIVE small diamonds across the top.  We don't do these kinds of things - these extravagant things.  It was such a surprise and made me feel so 'lifted'.

The truth is, we needed the time away.  Away from the house filled with Gavin.  Away from caring for anyone but us, even for just a night.  Away from the day after day routine that is both comforting and suffocating.

But guess what.  Just like many parents that are enjoying coveted "alone time," we talked mostly about our children.  And we shed many tears over the turn of events in our family.  But it was still time and we were grateful to spend it together.

I've been thinking about our summer plans over the last few days.  We're hoping to go to the beach as a family a few times - Gavin's favorite place, for sure.  Hopefully the urn we are having custom made will be complete soon and we can collect Gavin's ashes to bring home... and to the ocean.

I'm also hoping to sign Brian up for swim lessons at the YMCA and maybe soccer on the weekend at a local kids gym.  I want to find ways to keep him busy.  I've had lots of suggestions to schedule lots of playdates - which is obviously a brilliant idea.  But here's the brutal and honest truth... with playdates, especially with kids I don't know well, comes socializing.  Obviously I would have to put on a face and be social with the Mom.  I would never be comfortable just dropping him off with a family I don't know, so that's not an option.  I'm usually not "rude-sounding" like this... but right now I know my limits.  I just don't feel like having to make conversation right now.  With anyone.  It's just the truth.

The other truth?  I've been having serious anxiety.  Like the kind where I have to remind myself to breathe during the day.  It's so frustrating!  The week ahead has me filled with anxiety.  Today I met with the videography team that taped Gavin's funeral.  They wanted to talk to me about the direction of the one video they are making - an inspirational video about Gavin's life which will live on my blog once it's completed.  They will also be giving me a video of Gavin's funeral in the next several days.  I'll also place that on my blog for those who'd like to see it.  The prep leading up to the meeting - gathering videos of Gavin over the last five years - was a very difficult and emotional task.  I had thought the meeting was going to be difficult, too, but was pleasantly surprised.  They are investing so much of their own emotional energy into making this right and honoring Gavin's legacy.  I am so grateful.   That was today.  Tomorrow is my next glimpse of Project Hope with an ultrasound.  Wednesday we are going to DuPont Hospital.  I'm talking to a pretty large group of doctors, nurses and more - almost all the people that have cared for Gavin over the last five years.  Especially the people from the PICU that were there for his final days.  I am overwhelmed that so many of them said yes!  I know how busy all of them are so I am beyond grateful to have this opportunity to say thank you to everyone at once in such a special way.  I am also terrified... but keep reminding myself that I gave a freaking eulogy at my five year old son's funeral.  That's just about the hardest (and the worst) thing you can do - and if I can do that, I can do anything.  Then Friday the three of us are headed down to The Gift of Life Family House to meet with them and choose the room that they are dedicating to Gavin.  It's an overwhelmingly emotional week.  Topped with the anxiety of waiting for the phone to ring with Project Hope's genetic testing results and gender reveal.  Whew.  Breathe, Kate.

The truth is, we all really miss Gavin.  A lot.  It definitely doesn't get easier, that's for sure!  I think God slows everything down initially so you can survive - literally survive - the first few weeks.  Then it all slowly creeps back in... not too much too soon... just slow enough that you can have a gradual sinking into sorrow.  I have to say, God has been very considerate of our emotional, mental and physical needs.  Definitely a pretty cool trick on His part.  Ed and I find ourselves crying a lot more - which isn't a bad thing, unless you're in the middle of a restaurant.  But what do we care.  Brian has become a tad more clingy - which made me slightly afraid of leaving him overnight, but luckily he was great and had SO much fun with Katja.

This afternoon Brian and I were sitting on his bed (in his old room) and reading a stack of books.  Suddenly he jumped up and pointed out the window.  

"Look at that!" he said.

"Look at what, buddy?"  I asked.

"Look at the tree!  It grew!!  Soon it will grow and grow and grow SO tall that Gavin will be able to climb down from Heaven when he's not sick anymore!" he excitedly explained.

*Sigh.*

We had a chat about how Gavin won't be coming home from Heaven... but how he's not sick at all there... and how being dead is forever and permanent... and we went through Gavin's death again, like we do nearly every day... and I told him a cool Heaven trick.  Do you know the cool Heaven trick?  I told Brian that if he just THINKS about Gavin... or talks to Gavin in his mind... or tells Gavin he loves him without even using his voice to do it... that Gavin can hear and see everything.  That, kind of like the video monitor we have where we can see and hear into a room, there's the BIGGEST video monitor in Heaven.  And Gavin can look at it all the time and hear and see and be all around you.

While it might seem torturous from the outside looking in - that I have to constantly talk about Gavin's death to our four year old son who is desperately trying to grasp the concept of what it means to be dead... it's not.  To me, it is a beautiful and unexpected gift.  Brian is very wise and I feel grateful that he is trusting enough to ask these difficult questions and share his thoughts the way he does.  And each time I am re-telling the story of Gavin dying... I feel a part of my heart healing.  Each time I tell Brian that Gavin is right there with him... that Heaven is everywhere... that Gavin can hear him... I believe my own words more and more.

I guess that's another cool Heaven trick.  

I hope they keep coming...

Connections...

My absence over the last few days has been really refreshing.  Ed and I decided (pretty last minute!) to skip out of town for two days.  It's always when we do this that I am extra grateful for the amazing women in our lives that are happy to spend time with Gavin and Brian while we're gone.  Miss Sara and Miss Katja split the time and it sounds like they had a lot of fun with the boys!

Stealing away together here and there is quite nice if you can swing it.  We didn't do much of anything fancy... but we did reconnect.  An important thing to do when you're raising small kids.  At least to us.  We came home refreshed and recharged... and, unfortunately, to a sick little boy.

The girls reported that Brian took naps both days that we were gone.  That's pretty unusual - especially two days in a row - and there were no other "symptoms" - so I chalked it up to a growth spurt and assumed I'd be buying bigger clothes this week.  Then, twenty minutes from home in the car I got a call from Katja telling me that Brian felt warm.  I pushed my foot down on the accelerator and got home as fast as I could.  Sure enough... a fever of 103.2!

He was up a few times during the night.  Today, he's been pretty lethargic with no appetite, but no other symptoms except high fevers.  Looks like he'll be missing school for a few days.  Poor kid.

Maybe it was the fever - but Brian was overwhelmingly sweet to his big brother all day.  He kept seeking Gavin out to play and interact!

And, even more of a surprise - Gavin wasn't overwhelmed by Brian!  He loved every second of his attention and hung on his every word.

Looks like someone may be following in his Mommy's footsteps with the camera!

He even asked Gavin to say "EEEEEE."

After naps, Brian insisted we hang out in his room so he could read a book to Gavin and me.

It was such a sweet time.  Brian chose a book about a bunny - which, ironically, is MAJOR foreshadowing for an upcoming blog this week.  Stay tuned!

All in all - despite Brian's illness - it was a lovely weekend filled with heartfelt connections in our little family. 

 I hope you enjoyed your weekend, too.

The Simple Things...

Our lives can often be dramatic with very high highs...and very low lows.  So it's often days like today that I treasure.  Just an ordinary "according to schedule" day.  

One of my favorite times of the day is picking Brian up from preschool.  Brian loves school...and his teachers and friends love him.  He's happy to say goodbye in the morning...and he's happy to see me two and a half hours later when he walks out.

Typically when he spots me he comes running and, I swear, it's such an ego trip.  He runs up with his arms spread wide saying "MOMMYYYYYYY!!!!!!!!" and jumps into my arms.  Really - can it get any better?  I always have a nice cold milk waiting for him in the cup holder and we drive home talking about his morning.  I treasure that time in the car with him.

Today was Gavin's double therapy day.  His teacher, Miss Janna, came first and they worked on color matching, worked with play dough and used the iPad.

Miss Maggie followed with speech therapy and continued to work with the iPad.

We had a lovely visit today from our very own Miss Katja!!  The boys and I were so happy to see her.  She stopped by on her way to work at our neighbor's house and we had a nice time chatting.  She stopped by again with one of the little boys she watches during Gavin's therapy.  Miss Sara and Brian decided to join them on a walk!  What a sight to see two of my favorite girls hanging out and (trash talking me) spending time together.  *wink*  In all seriousness, it makes me so happy that we have such good relationships with our helpers.  These girls become like daughters to me.

After Gavin's therapy, the two of us took off for our joint Dr. Trish appointment.  Gavin is always happy to see her and to be in her office.  She worked on both of us for a long time - we needed it!  Between my swollen, bruised and stitched up face...and Gavin's swollen tonsils and adenoids...we were a wreck!  She tried to calm a lot of the swelling in Gavin's throat and told me to let her know if his sleep improves over the next few days.  Fingers crossed!  It's so hard to articulate how much I love Dr. Trish.  She's so special to us.  This photo is a good example of what Gavin's treatments look like.  She barely touches him!

I got word today that our donor will be taking her HCG trigger shot - which will induce ovulation.  Her egg retrieval will likely be this weekend.  My embryo transfer could be either June 5th or June 7th.  If it's June 7th I will be so happy - it's my parent's wedding anniversary.  My Mom and I were talking tonight about how cool it would be if I "conceived" on that special day. 

I'm feeling very lucky right now...and in a very good place.  Ed and I are relaxed from our trip...Brian is doing so well in school and with his speech...Gavin continues to make progress despite health issues here and there...and we are nearing the end of our fertility journey.  I always thought the end of our journey to have a third child would only feel good if we had a baby.  But now I feel differently.  Although I'm sure I'll be disappointed if I don't get pregnant - I know in my heart it's the end.  Pregnant or not, I walk away knowing that we tried.  And I walk away feeling so grateful.  Grateful to have my children.  Grateful to have had time with my daughter.  Grateful to have had a supportive husband through all of our fertility trials and tribulations.  And grateful that all of you have walked beside me on this journey.  It hasn't been easy - and I had to find my own way and do things in my own time.  But I know I couldn't have done it without all of you.

So...here we go.  This is it!  In less than a week I'll be soliciting your positive thoughts for one tiny little embryo for the very last time.

Bittersweet.

The 'W' Word...

We have had a Kid Kart Adaptive Stroller for a long time.  I remember distinctly the day we went to pick it up at the hospital's seating clinic.  We went as a family - Brian was still an infant!  I definitely wanted Ed's support.  I'm not ashamed to admit that it was a little tough for me to accept that my son was getting the "w" word - a wheelchair...

...which is why I was glad that this was called an "adaptive stroller."  It gave his little body, which at the time had such little tone, a lot of support.  We bought it with two different bases - a stroller base with wheels and a push bar and also a hi-lo base for inside.  The base for inside use has a hydraulic lift that can lift the seat up high or make it flat almost to the floor.

We used it for quite a long time - but then Gavin started to get a little stronger.  I wanted him to have more opportunities to control his own body and not get reliant on adaptive devices holding him up or in or on anything.  It seemed like a bold move - but I think it paid off.  Gavin's trunk control has surpassed what anyone ever thought - and he can sit for short periods in a chair with nothing holding him in or on!!  

Like in this photo:

Or, hello?  Who ever saw THIS coming???

All that to say...it felt weird the other day when I suddenly decided to bring the Kid Kart back up from the basement.  I had to figure out how to make adjustments to it myself so he'd fit in it again, but it wasn't too hard.  I brought it back for a few different reasons.  If I'm honest with myself, Gavin will really need seating like this when he goes to school.  He doesn't have to stay in it - but it will keep him from crawling out of Sara's arms or fighting to sit still during things like "Circle Time" or any other class activity!  And with the hi-lo base, he can sit right on the floor with the other kids without (yuck) being on the floor and possibly laying or...licking...said floor.  Or it can be lifted up to work at table height.  My concern with sending him to school in this has changed because he's now able to go with Miss Sara (best news ever).  She can take him in and out of the restrictive chair throughout the day.  I don't have to worry that he's sitting in it the whole class day.

I also thought it would be good for him to have another play option during the day.  It's easier to get him to focus on a book...or the iPad...when he's sitting still in a seat.  Already he and Sara have sat by the window for bubbles...playing music...and working on his iPad.  Gavin has loved it!  And, finally, it's another way to keep him upright lately.  His allergies are out of control this season.  It sounds like he's snoring all day and night.

Today was the first time he used the Kid Kart in therapy and it worked out great!  We brought him up to the kitchen table and he (and Brian) worked on Miss Janna's puzzles.

Once Sara and I saw how well it fit right under the kitchen table, we both looked at each other with that "are you thinking what I'm thinking?" look.  We may start using this instead of a highchair to feed him at meals!  I'm concerned about it getting messy with food (Gavin isn't the neatest eater at times!) so we'll just have to see how that goes.  The Kid Kart isn't the easiest to clean and I'd hate to wreck it with food, milk, vomit, etc.

Miss Maggie came after Janna for Gavin's speech therapy.  After working on popping bubbles with his lips for a little while, she asked if Sara could take Gavin in the other room to play so we could talk.  She wanted to sit and come up with a game plan for the iPad going forward.  We need to start using it more with him and making it more accessible to him.  Some examples are to have snack choices loaded up and offer him a choice of two each day.  Whatever he presses will be what we give him - even if he presses it by accident.  Hopefully it will make him feel like he's participating in choice-making...and he'll soon get the idea that he has to press what he wants to get it.  She also wants us to start working on "Yes and No" on the iPad.  I'm hoping he understands the concept.

I'm looking to purchase a mount for his iPad that can attach to his KidKart.  If anyone with experience with these has any suggestions or recommendations, I'd appreciate it!

It moved me so much that Maggie wanted to have that meeting.  I know that sounds silly, right?  It's her job - this is true.  But the fact that anyone gives thought outside of work to come up with ideas or suggestions to help my son...it just moves me!  Honestly, all of Gavin's therapists are so invested in him - he is so lucky.  Just yesterday, Miss Stephanie was here for OT.  She heard an idea and immediately thought of Gavin.  Gavin tends to smack or swipe the iPad screen with his whole hand.  She heard the brilliant idea to get finger gloves and cut off the index finger.  This way, the only thing that will make the iPad work is that ONE finger!  Now I'm on a mission to find very small finger gloves for my little guy!!  It's hard to believe that in September we will have had this group of therapists for two years.  It will be very hard to say goodbye to them.

I had big plans for tonight.  Miss Katja asked if I would attend her graduation from college and I was SO touched...and felt very honored knowing she was given limited tickets.  This morning I woke up with a dreadful toothache.  And before the clock hit noon I was scheduled for a same day root canal.  Trust me - I'd rather be ANYWHERE than a root canal.  I feel so sad that I can't be there for Katja.  It inspires me that a young girl can come to America as an Au Pair by herself - knowing only a little English.  A few years later she's not only fluent, but getting A's in college while working!!  I feel proud of her as if she's my daughter.  Congratulations, Katja!!  We love you!!

Could My Christmas Miracle Come True??...

So much has happened in my life in the last 24 hours, it's hard to know where to begin. It gives me a headache to think about putting the events together in coherent sentences. But then again, headaches have been my nemesis for the last 24 hours so coherent is not natural. I know that didn't make sense - see what I mean???????

What I do know? I am a brilliant Mommy. Last night I made cupcakes for dinner. Yes, you read that right. I had planned to make meatloaf, which I did...and I scooped them into cupcake tins. After baking them with their red icing, I placed one into cupcake tinfoil and placed a snowman cupcake decoration right into the center.

Mr. Brian was over the cupcake shaped moon.

Know why I'm also brilliant? (Don't worry - my ego will automatically deflate about two paragraphs from now) I have been taking videos of Brian - videos asking him to do certain things. It's like a game...especially around mealtime. I ask him to take bites of his dinner or his lunch or drink his milk....and he does it. Why? Because he LOVES to watch the videos back of himself on my camera. And right after he watches the video, I delete it (unless it's a keeper, of course). Manipulative? Yes. But I just got my kid to believe that meatloaf was as delicious as his birthday cupcakes...and he asks for seconds. Wanna fight about it?

This morning our new helper had the day off...and Miss Katja came back to help us until lunchtime. Contractors were in our basement for the third day to fix the damage from Hurricane Irene. There was so much going on.

I also had to take Brian for his physical. The first stop was to get weighed. He weighs 33lbs...which puts him in the 50th to the 75th percentile. Then she measured his height. He is 37 1/4 inches high, putting him in the 25th to the 50th percentile.

They did a color blind test and a vision test - asking me to cover each eye...and asking him to identify objects. Not hard, except they had to believe my "Brian translations." I know what words like "star" and "heart" and "flag" sound like coming from him!

The nurse took his blood pressure (which was fine!) and he was so patient as she had to pump his arm three times.

Then Dr. Kienzle (sounds like Kinz-lee) came in. After we chatted about my crazy facial bruising (stay tuned for more on THAT drama....) he examined Brian. That's when it got a little...worrisome.

I'm not sure I've ever written about this, but Brian has always had a slight heart murmur. It was never anything serious - he was examined and we were told not to worry. But today the pediatrician noticed a change. He listened to his heart sitting up - and then laying down. Usually the murmur would get quieter when he laid down - but today it wasn't. This could mean a thousand things...or nothing. It was suggested by the doctor that he *might* have a hole in his heart, but we won't know for sure until he sees a cardiologist. So I'll be scheduling that as soon as possible.

When we got home, there was still plenty of time to spend with Miss Katja. She was so nice to get Christmas presents for the boys! They have such strong bonds with her. She got Gavin an amazing and thoughtful gift. The Munchkin Mozart Magic Cube. He can press any side to activate music and lights - but she also considered his teeth banging. This is a toy that is pretty rubbery all over. It's something we can leave in his crib and not worry that he'll hurt his teeth if he mouths it!! What a great present for Gavin. (Trust me - he's tough to buy for!!! She nailed it!!!!)

She got it right for Brian, too! Just the other day Miss Janna, Gavin's teacher, brought a bowling set for Gavin to try. Brian was VERY interested in it. Katja wasn't even there!! Yet, that was what she chose for Brian's birthday gift!!

A Buzz Lightyear mat to serve as the "lane". White circles that show the child where the pins should go - and a ball to bowl with. Brian was ecstatic!!!

After Miss Katja opened our presents (a crock pot, a cozy chenille blanket for her couch, a pair of pajamas and a microfiber hair towel because I know she wants to be just like me - BIG WINK) and we opened ours (two movie tickets with a night of free babysitting - at least I think it's free babysitting - ha ha) we said goodbye. Ed was home and we decided to head out behind her to go to the grocery store to knock out our Christmas food ingredient list. I had such a headache.

It was there...in the produce section that Ed's cell phone rang. It was the contractor that was working in our house. He had Gavin's teacher, Miss Janna, on the phone. She was wondering where we were...for our regularly scheduled Thursday at 1pm appointment. Ed handed me the phone and I wanted to cry. (And I did) And then I realized - we're 20 minutes away...and at 1:30 Miss Maggie is supposed to come. I screwed up both appointments. The last ones before Christmas. I suck.

On the way home I was telling Ed about my headaches - and a newly developed numbness and tingling over my eye where the light fixture fell on my face. He begged me to call our family doctor. When we got home - that's just what I did. When I explained my newly developed symptoms - that weren't there the first and second day - they said to go STRAIGHT to the E.R. - that they were very worried. Great.

So off to the E.R. I went - happy that Ed was home. What happened next threw me for a loop. My triage session was long - the male nurse didn't want to believe that I wasn't a victim of domestic violence. (I can assure you that I am not. I'm Irish - I could totally take him. Just kidding. Or am I? *Evil Wink*) He was only doing his job, but when I told him what I just wrote in between those parentheses? He laughed and finally walked me back to see a doctor.

I was quickly brought back for an MRI and CT scan. And just as quickly (E.R. time) I was told the results. I have a pretty decent concussion. And I also have...wait for it...a FOREIGN BODY STUCK IN MY HEAD!!!! I thought I was on a TV show. But sadly, I was not. They thought that maybe a shard from the light fixture (even though it didn't break) got under my skin. Or a piece of metal. Either way, they scheduled me immediately for a visit to the plastic surgeon tomorrow morning.

A WHAT??????????? Could my Christmas Miracle actually come true??????? A plastic surgeon??? I may actually become a "REAL" "Real Housewife" after all this!!!

I have no idea what it means - or what they will do tomorrow. All I know is - I want to go to sleep and wake up in 2012 happy and healthy and pregnant and maybe even with an eye lift and a boob job.

Come on. I deserve it.