Angel Days and Rainbow Babies

I remember reading a book covering the topics of loss and grief not too long after Matthew died.  One of the topics in the book that scared me was that the second year after a loss is so much harder than the first.  The first you are still experiencing shock and denial and in the second here, you hit reality.  You realize that the person you lost isn't returning and that they did exist and the pain of forever slaps you in the face.  I completely believe that.  I do believe that the second year is like a punch in the throat.

I also believe that there is a part about having a "rainbow" baby that no one tells you about.  No one tells you that it is so similar to that second year.

There is obviously so much joy and happiness with each and every baby you have.  And there is so much hope and promise.  And with a rainbow baby, I think you have a different kind of appreciation.  You know how easily it can sleep away and that turns you into a different parent than you were before.  There is so much gratitude and for me at least, even more patience.

But, there is also a different kind of reminder.  With everything new Samantha does, I'm reminded in a different way of what we didn't have with Matthew.  We didn't get to see that first grin, hear those first little giggles, listen to him click and clack his tongue, watch him explore a lemon wedge, encourage him to take his first steps or chase after him as he laughs, crawling at the fastest pace he has down the hallway.

It's not like I didn't realize I missed those things, but you tend to focus on the big aspects.  The first day of school, the first birthday, the first haircut.  You know, all the milestones and not so much the little things that make up so much of their personality and so much of their daily lives.

I think those realizations made Matthew's Angel Day harder this year than maybe it was before.  And maybe part of it was that daily fear that something is going to happen to Kaitlyn or Samantha.  And knowing that obviously October 15 is a bad day for our household, it didn't make me rest easy.

This year for Matthew's angel day, we took our time getting ready.  We had a big breakfast.  We got dressed and we went to the cemetery with the items the girls and I had purchased the day before.  Kaitlyn had drawn him a picture and wanted to read him a book like she does for Samantha every night.  She was worried about leaving the picture there though because she hates how the cemetery throws things away on a whim when they want to cut the grass.  We noticed some bald patches in the grass and made plans to fertilize it.  We talked to him.  Kaitlyn read to him and Samantha crawled towards his grave marker.

We celebrated him.  We honored his life.  We missed him.

The Anniversary No One Wants

Tomorrow is our "Anniversary No One Wants."  Tomorrow it will be 4 years since Matthew left our home to never return.

4 years since the frantic 911 call.

4 years since Dusty performed CPR.

4 years since that terrible ride to the ER.

4 years waiting for Dusty to get there.

4 years since the EMT told me there was nothing more they could do.

4 years since she took me into the ER and I saw the team frantically working on him.

4 years since I had to ask to hold him.

4 years since I begged them to at least remove the needle from him leg to cuddle him.

4 years since we sat with his body until the coroner arrived.

4 years since we left the hospital empty handed, again, only to not return for him.

4 years since we had to go home and reenact how we found him with a fake doll provided by the coronor.

4 years since we started waiting for answers.

4 years since we started wondering why.

4 years since our new life began, the life without him.

Tomorrow is Matthew's angel day.  The anniversary of his death.  If I could make the day disappear from the calendar I would in a heartbeat.  Tomorrow is also the "wave of light" and Pregnancy and Infant loss awareness day.  At 7:00 PM people are encouraged to light a candle for the little ones lost far too soon to begin a wave of light around the world for these missed princes and princesses.

When you have a baby, you never stop and think "what will I do if he dies?"  In the excitement of planning nurseries and birthday parties and cake smashing, you don't stop to think about how you would honor his life on the anniversary of the day he died.  You don't think about what the plan will be for his angelversarry.

Tomorrow, we will go to the cemetery.  We will decorate for fall.  We will tell him the 4 things we know he already knows.  We love him to the moon and back.  We miss him so much our hearts hurt.  We wish that he was here to play and learn and grow with us.  And we look forward to being reunited.

A lifetime can last as little has 70 days and leave an impact that touches the world for eternity.

11 months

This little girl is on the go and moving quickly towards her first birthday.  I cannot believe that this is the same little girl that was just in my belly a year ago punching, prodding, kicking and poking, getting nice and comfy in there.

She has grown so much in the last month.  She's up to:

20 lbs and 6 oz, which puts her at 51%

29.25 inches (or so?) which puts her at 73%

19" around the noggin, which puts her at  99.6%

She has really thinned out.  She still has chunky little thighs, but overall, she just looks thinner.  I'm sure it's part "I refuse to drink as much formula" and "If I'm awake, I'm on the go"

There are times when I cannot tell who is a bigger ham, Kaitlyn or Samantha.  Samantha is really big on mimicking you right now.  She loves to make faces and have faces made at her.  She loves playing peek a boo and with any of her toys that make noise.  She is cruising along like a pro now and on a couple of occasions has taken a step or two without holding onto anything.  Considering that she hasn't mastered standing and balancing yet, it might be a little while before she's walking.  

We've been battling an awful yeast diaper rash all month.  We even tried taking her off of all dairy to help, but it didn't really help anything.  So, we put her back on regular formula from the soy.  She hated soy.  Hated it.  Refused it.  She is loving food though.  She eats 3 meals a day and a couple of snacks.  An average breakfast for her is half a waffle and half a banana (she hates eggs for some reason and gags whenever they touch her tongue), lunch is usually some kind of meat, like chicken and veggies, dinner is whatever we're having.  She is down to about 15-18 oz of formula a day and sometime this month we'll start transitioning over to milk.  

Samantha's tongue has healed nicely and she uses it ALL the time.  She's constantly twisting it, turning it, pulling on it, sticking it out and being thrilled with it.  She obviously understands a few words like No, which doesn't mean she always follows instructions, but she knows what it means.  She says a couple of words.  She repeats No back to us and she says Dada.  She says mama, but not to me, mostly when she is tired and hasn't been to sleep yet.  With Dada though, she knows what she is saying.  She is an absolute Daddy's girl and gets so excited when he comes into view.

We're getting close to the girls' joint birthday party and I cannot wait!  Just one more month and she won't be our little baby anymore.

In a week

We will mark 4 years since Matthew left us.  4 years.

I notice that sometimes I fall into the same patterns I remember having right after his death.  A lot of days after feel like a blur.  I have minimal recollection of a lot of things while so many memories are so there and so forward in my brain that I feel like even if I took a scrubber to my brain, they will always be there.

While during the long hospital stay and our NICU stay the internet and message boards provided such a sense of support,  I wanted absolutely nothing to do with the internet after Matthew passed.  I didn't want to stumble across the wrong story, I didn't want to be asked how I was doing, I didn't want to feel pitied.  But, I used the computer a lot.  I played a lot of solitaire.  It was a distraction.  It forced my brain to not think about what we were experiencing.  It took my mind of the incredible pain of engorgement, or the fact that I didn't have any baby diapers to change, any bottoms to pat asleep and if people were around, it offered my an opportunity to be in control.

When my mind wasn't occupied, the tears would not stop.  How could they?  Our baby was gone and there was absolutely nothing we could do about it.  A part of our life had ended and time had stopped for him and in a way for us.  Yet, for the rest of the world, life still went on.  People still had to go to work, had to eat, had to clean bathrooms and so did we.  Sometimes I think this is why I still like to stay so busy.

It's funny what the mind remembers.  I remember it being a long time before I could be by myself for even a moment.  I hated being by myself so much that I would have Dusty sit in the bathroom with me when I took a shower.  I'm not exactly sure why I was so afraid of being by myself.  While I can remember hat so clearly, I couldn't tell you how we got through Christmas.  Sometimes I still don't know how we get through Christmas.

4 years ago, we were a happy and hopeful family of 4.  Our biggest concerns were getting through the winter without Matthew being hospitalized with an infection and getting Kaitlyn to and from Speech therapy.  We had no idea what the future held for us.

An update on the Girls

With as hectic things have been, I haven't had a chance to blog on all the goings on with the princesses of the family.

As I blogged about last year, I was really not impressed with Kaitlyn's school last year.  It had so many flaws that I could have individually over looked, but together was too much for me to handle.  It resulted in me having a meeting with the principal, going over my concerns and him assuring me that it will be better next year.  I understood that some of the problems were a result of the district closing the school Kaitlyn went to in Kindergarten and shoving all those kids, and some teachers, into random schools.  Chaos obviously ensued.  And while I believe the district failed to make the transition easy and did not give the principals the proper tools to ensure a successful year for everyone involved, I also believed the principal failed to take the simplest steps to make it easy and welcoming for the parents and students.

The school year started with Kaitlyn being assigned to the one class I did not want her in, and considering in the principal's meeting, he promised me he would not only not put Kaitlyn in that class (I constantly saw the teacher on his blackberry on facebook while his kids ran wild) but that he would put her in a class that challenged students on an individual level.  When I voiced my concern about the class he told me I should have gotten his promises in writing so they would mean something.  My jaw nearly hit the floor.  I explained she would not be in that class and she was changed to the teacher who was supposed to be the best at teaching to the students based on their skill level.

Within the first couple weeks, my stress level over the school increased and my anxiety over even taking her to school got so bad that I would feel guilty even taking her.  Then, I picked her up one day and she was starving.  I asked if she ate her lunch, she said no because C had spit in it. I asked if she had told a grown-up and she said she had.  The grown up told her "Well, he said he was sorry, what do you want me to do about it?"  I immediately called the school.  I was told that the would talk to the staff and return my call in the morning.  Late the next afternoon, I received a return call that everyone in the cafeteria said it didn't happen and Kaitlyn must have been confused.  I explained I would bring Kaitlyn down to point out the staff member and was told that was unnecessary, they'd all been talked to and it never happened.  Kaitlyn swears it did, to the point of tears as do the kids who sat around her.

That's when I started calling other schools.  Then, all of second grade began losing their recesses because of a few unruly kids.  About a month in, it was back to school night.  The straw that broke the camel's back.

In preschool, Kindergarten and 1st grade we got the same speech "This year will be difficult and challenging because so much is expected out of them next year and we want them to be prepared."  This years speech was "Third grade is so hard and challenging and so many kids struggle, that we want to have as much fun as possible this year."  I asked "wouldn't it make more sense to spend the year preparing them for next year so they don't struggle?"  And was met with a blank stare followed by the speech on using clorox wipes once a week on their desks.

After the classroom speech was done, many parents approach the teacher and do the "How is so and so doing in class" speech.  I already know how Kaitlyn is doing.  She has never, ever been in trouble at school.  Not so much as a "quiet down Kaitlyn" and I know she's far above grade level in every subject.  So, instead we had this conversation:

Me- Hi, we're Kaitlyn's parents, I had a question about the curriculum.
Ms. R- Ok
Me- I understand that many of the kids need review, but I'm concerned that 3 and 4 weeks into the year they are having the words "I", "am", "we" and so on as spelling words.  When do you anticipate the spelling words will be more challenging?
Mrs. R- Well, we're still doing review
Me- Ok.  How long do you think you'll do review?
Mrs. R- Well, we're still working on review
Me- Ok.  I understand that, when do you think you'll move onto more challenging topics?
Mrs. R- Well, we're only on our second story of the year.
Me- Ok.  I get that you're doing review.  How long do you anticipate doing review?
Mrs. R- Well, we're still working on review
Me (can feel my eye starting to twitch)- I totally get that you're doing review, Kaitlyn is bored out of her ever loving mind.  What is going to be done for the students that do not need more review.  What is your game plan?
Mrs. R- Well, you can do more work with her at home.
Me- We do.  We're challenging her like crazy at home, which just widens the gap between what she knows and what she's doing here.  Do you think you'll be done with review soon?
Mrs. R- We're still doing review.
Me- Ok, thanks.

I was so aggravated.  Here I was, sending my child to school there for 7 hours a day for her to have ridiculously easy work, finish it at then spending the rest of the time with her head on a desk.  Then, missing recesses and spending all that time with her head on the desk.  I can so do that here!!

So, began the "hardcore" search for a new school.  I literally went straight from there to Back to school night at the school her kindergarten principal had been transferred to.  But, they were full.  And so were the other 5 I called.  Finally, one of my favorites answered the phone.  I asked if they had openings.  She said she didn't think so.  I may have sounded desperate, but I was, as I nearly broke down and explained to her how badly my child needed out of the school and if I didn't find a new one, we would be homeschooling and I just didn't know what else to do.  She talked to the principal and Kaitlyn was able to start the following week.

Kaitlyn went back and forth between being upset and excited.  She was so sad to leave her friends, but so happy to not sit all day with her head on a desk.  The night before her first day, I took her to 8 different stores for her to find the perfect first day of school outfit.  We went together that morning, the amazing secretary gave us a tour, everyone was just so nice and friendly.  When I picked her up, she was almost sad that she had a great day because she knew that it meant she was probably not going to be seeing her old friends every day.

We've been there since the 8th and already she's thriving.  I was worried that she would be really far behind the class, but she caught up quick.  Her progress report was awesome, she's still above grade level for everything and producing quality work.  Her teacher utilizes two different online computer software programs for the students to be able to work at their skill level in both reading and math.  Kaitlyn LOVES that, so she has been using her laptop a ton.  Thanks Santa!  Plus, the school has so many activities, parent involvement stuff and communicates really well with the families.  And, they have a Watch D.O.G.S. program: Dads of Great Students to help get the male influences more involved with the school.  So, we love it.  Kaitlyn loves it and we're so relieved we made the switch!

Other than that, Kaitlyn is going back and forth between being our sweet little angel and some attitude-y monster from the depths of the sea.  She is an amazing big sister, loving girl scouts and just overall enjoying the last month or so of being 6!

Samantha has had some changes too.  She's cruising along with her toy and on the furniture.  She wants to be standing all the time really.  She is pulling up to stand constantly and getting better at standing on her own for a few additional seconds each day.

A couple weeks ago, we took her to the ENT for her tongue-tied tongue.  We were fortunate that it is the same doctor who performed Kaitlyn's tonsil surgery and I trust and like him.  He confirmed that it was pretty moderate and because of Kaitlyn enduring speech therapy, wanted to take care of it.  We opted to do it in the office then so we could have it done as soon as possible and avoid as much delay as possible.

It was so much different than with Kaitlyn.  This time, she was placed on a table and bundled up with what I can describe as a heavy swaddle blanket.  Then, the doctor waited for her to cry.  And she didn't.  And so he poked her.  And she didn't cry.  So, he started to numb under her tongue, thinking that then she would cry, life her tongue and he could have easy access.  Nope.  She would not cry.  She had no desire to cry whatsoever.

So, he had to go in and try to clip it.  She didn't let a cry out until he cut it.  And it was more of a "what do you think you are doing cry" than a pain cry.  I cuddled her and in just a few moments (after bleeding on me a bit) she stopped and was giggling.  I think her biggest complaint was nothing crunchy for a week.

A few days after that ordeal, she developed this persistent jerk of a diaper rash.  NOTHING would cure it.  Her doctor thinks she got yeast in her small intestines so her poop is literally giving her a rash just by touching her skin at all.  Nice.  We've been using probiotics and creams and disposable diapers (we don't want to ruin the cloth, and we needed to sanitize the cloth to make sure any yeast was out of it) and it's still there.  I suspect a sensitivity to tomatoes, so I've cut them out.  And that has helped.  But, in keeping this food diary, I've also noticed she spits up a ton more when she has yogurt or cheese.  I've cut those out and debating switching to a soy formula to see if that helps with spitting up and tummy aches over all.  Anyone had experience with soy opposed to milk?  If so, share why you switched please :)

And that's really it for now :)

Life can be amazing and still hold rough days

I do feel incredibly blessed for what I have in this life.  I am healthy, I have an amazing husband that I am truly in love with (even in the moments when I can tell he's testing my last nerve), I have 3 beautiful children, I have 2 little girls that makes the sun shine brighter and the colors of the rainbow more intense than I ever could have imagined, I have wonderful friends who I know I can depend on in any situation and whom I trust, we have a house with plenty of room for all of us and our stuff, we have full bellies and we're making happy memories each and every day.

However, you can be happy with life and still have moments where it grief makes it so incredibly painful to breath.  Sometimes you can predict them, you can avoid things that are going to trigger a feeling of such immense sadness that it just overcomes you, but you can't always.  One of the rough parts about grieving your child is that while a part of you is always missing, and even in the happiest of moments, a part of you is sad beyond words, is that sometimes it hits you like a punch in the stomach and the tears start and don't stop.

This is "that time of year."  It's when the grief is at it's worse.  And from the past years (how can it possibly be years since we've held, touched, loved on, kissed, fed and cuddled with our little boy???) I know to expect there to be more rough days through December than there are in the spring.  We are in the time of year where I can say "4 years ago today we were ______ with Matthew."  We are in that short time frame of year where 4 years ago he was alive, he was at home with us and we had hope.  We had no reason to think he would become a statistic, a part of this ridiculous world of SIDS and all that comes with it.  We're quickly approaching the 4 year anniversary of his death and I hate that.  I hate everything about October 15.

I think this has also become the time of year when I reevaluate the things and relationships in our lives.  I have less patience.  I feel more "blah" about things and at the same time I am even more appreciative of the positive, supporting relationships that we have.  I feel almost all over the place.  And I know that's ok.  I don't need to be Miss Cheery Sunshine all the time just to prevent other people from being uncomfortable.

And, I have to say, I am getting to a point where I don't necessarily believe in SIDS.  I'm sure I'll need to explain that further in the future, and I will.  I think I've reached the point in my grieving where I don't feel as though I have to know WHY because I know that knowing will not change a single thing in the world.  It will not bring him back, it will not give us back the last 4 years and there is a good chance it will not prevent the death of another little one.  I believe SIDS was a term invented because it's really hard to tell parents "we're very sorry and we know you did everything right but sometimes, babies just die.  There is nothing you could have done differently to prevent this, sadly, your baby died for unknown reasons."  And it's even harder for society to accept that.  Then again, we've become a society that lives to be 95 and then when someone's body and soul are ready to pass at that age we still keep them hooked up to life support to gain more time.  And I completely understand that desire to have more time.  COMPLETELY.

At the end of the day though, and every moment throughout, I miss him.  I'm sad that he didn't get to meet Samantha.  I'm sad that Kaitlyn doesn't have her 4 year old brother to play with, I'm sad that we don't get to know more about him and explore the world through his eyes.  And I'm sad that we're going into another holiday season missing a part of our family.

It's been a while

Since I've blogged.  It's not because of a lack of topics I have on my mind or things to discuss.  Right now, it's more like a lack of time, a lack of desire and maybe a bit of funk.

We're in that place.  That place where I can look back on 4 years ago and remember what we did that day and what I would have done differently if I would have known how close we were to the end of Matthew's life on Earth.

In a place where hugs last a little longer, tears flow a little easier and I dread the fact that in less than a month it will be 4 years since we held him, kissed him, snuggled with him, brushed his hair behind his ear and whispered to him all of our hopes, dreams and love for him to him.