7 years

This last year has been a challenging one.  My husband was working out of state for pretty much all of 2019.  He left middle of January and came back middle of December, coming home on weekend trips about every 4-6 weeks.  We visited him about once a month.  When I said we were in CT last year for Naomi’s birthday, it’s because the kids and I were visiting him on school break.  He had a 2-bedroom apartment again, like he did when he had the 6-month work trip during my pregnancy with Naomi.  The apartment was in the same complex with identical layout, yet I remember it feeling much larger. ;)  Last time this apartment was larger than our actual home and we had a 2yo and 5->6yo, now it was less than half the size of our home and we had a 3->4yo, 8->9yo, and 12yo.

I was in full agreement when he agreed to do the work trip, but of course life throws curve balls… some expected and some not.  It was supposed to be a 6-month trip, then changed to 10-months before he even left “but we really mean it, we are being realistic so it’s not extended,” and finished in 11 months.  The extra money he makes on these trips does help and we definitely did some outsourcing with it.  Our upstairs long-term tenants left at our old house and we had a lot more repairs there than we usually deal with.  I am always stretched thin in my time management but this was a new level of survival mode that I still can’t seem to shake ourselves out of.  (Partly because of the many “oh we will just shelve dealing with that until he is home” decisions are now pressing and/or overdue.)

As far as Naomi’s place in our lives, I feel like as a family we are in a good place.  I do wish we made it to visit her grave more often.  I am trying to talk about her more with the littlest one, but she still finds the whole thing quite confusing.  She also gets upset when she sees old pictures of her siblings and doesn’t understand why she isn’t in the picture too (it’s from before she was born!), so I think the concepts just may still be beyond her.  She is very social/relational and a passionate person, so I expect she will struggle at some point when she does finally get it.

Back to the grave – my husband surprised me by arranging for and picking up a replacement name plate for the grave site.  No, we still don’t have a headstone.  At one point this year when I was talking with the funeral home about headstones and mentioned the broken nameplate, they said they could get us a new one for no charge.  I’m very happy to have something official up again, even if the snow and frozen ground made placing it difficult.  My son and I picked out a wind chime fairy at Dollar Tree to put up, one for home and one for the cemetery.  The next day I was back at Dollar Tree with the littlest one for something else, when I saw the second runner-up fairy available as a garden stake, so got two of those too.  She wanted to carry them to the car, and proceeded to make the two fairies “talk” to each other on the way, making all the older shoppers comment on how cute she is.  (She can turn anything into pretend play.  Even in a shower with no toys, she has sat with her feet facing each other and wiggled her toes as pretend people.)  I know the fairies are likely to be thrown away by the groundskeepers in the spring when they start mowing, but I don't care.  That's partly why I got them from Dollar Tree.

He braved the cold wind to help while the girls took a break in the van.

Every additional child reduces the chance of getting a decent group picture by 70%.

She thinks putting her hands on her cheeks is her "cute face" and does it for most staged pictures.

A little haphazard, will fix when things start to warm up.

I was all proud of myself for remembering to tear off the tags at home, and forgot about securing the windchime to the stake.  So I decided to make a list, for my own future reference but also to share.

Things you might wish you had brought with you, when visiting a grave…

Any season:
-Scissors to cut tags off things you brought with you to place there.
-Something to drive a hole into the ground, if you are placing a garden stake and the ground is hard.
-A rubber mallet or similar, again might be needed for driving something into the ground.
-If you are placing a garden stake and hanging a wind chime or similar off of it, something like a rubber band to secure it to the stake.  It’s still going to blow off, but maybe it will stay on for a couple days instead of blowing off before you even get in the car to go home.

Summer time:
-Large hedge trimmers. (For a fresh grave that has been seeded with new grass, as it grows faster than the rest of the grass.)
-A large bottle of water. (If you have any live potted plants there to care for.  I eventually discovered our cemetery has water spigots and empty milk gallons available nearby to use for watering.  It’s pretty much impossible to keep up with watering potted plants in cemeteries, so I would always water anyone’s live plants anywhere in the area, because overwatering is near impossible.)
-Gardening gloves, if you see an errant strong weed inside a bush or something that is difficult to pull out and won’t be mowed down.

Winter time:
-Wear good boots, coat, and gloves.
-A shovel or even a snowblower, depending on climate and depth of snow.

Fairies in the garden bed at home.

As far as the headstone, I spent quite a bit of time trying to make a decision.  I finally realized that this was not a matter of me being indecisive so much as it was that all the choices plain sucked.  I am not generally a fashion/art/interior decorator type person, but the stock art in my sample booklet is just BAD.  I have some ideas though on next steps and am hopeful for quicker progress now that I know we are going to do something custom.

I looked through the last few posts earlier tonight and realized I never posted a picture of the necklace I had engraved with Naomi’s footprints.  I am not sure if I ever took pictures of it when I got it, and unfortunately I don’t have jewelry cleaner here, so this was as good as I could get it (after a quick soak in white vinegar and baking soda).  And now I know I need to be keeping my jewelry in the bedroom and definitely NOT storing in open air in the bathroom… the steam definitely caused some tarnishing.

I also want to throw in one more picture.  The doula I had with Naomi went on to start a bereaved parent support group at the hospital that has a Facebook group and monthly meetings.  I am not a consistent attendee (especially when my husband was gone), but I did get myself there when they had a special paint night.  An art therapist came and guided us all on the project and I love how mine came out.  It hangs over my desk now.

6 years

6 years feels awfully short and awfully long all at the same time.  I have a suspicion that the older one gets, the wonkier time works.

As usual, it's school vacation week which is great for everyday activities and school not interfering with Naomi's birthday, but also means vacation activities are doing the interfering instead.  We spent the last few days in Connecticut and came back today, with a 3-hour detour at IKEA in the afternoon.  The kids seemed to enjoy it the first hour, started dragging during the second, and probably would have held a mutiny if it had taken one minute longer to get out of there.  We were back on the road just in time to hit all the Boston rush hour traffic.

I didn't get any pictures at IKEA, but did snap a few last night.  We had been cooped up for days with kids having colds, and went out to Texas Roadhouse for dinner.  This is not a regular place for us so that helped make it special.  I used to waitress at a couple different ones and the kids have grown to love steak this last year.

She started excitedly yelling "Juice box!" from the moment we entered the lobby, but the hostess thought she was saying "Doo Boh!"

This one ordered off the adult menu.

Watching the line dancers for Cotton Eye Joe.

I tried to get one while he was snapping his fingers, so I got side eye instead.

We ended up getting back into NH right as the sun was setting, so the daylight was just about gone by time I made it to the cemetery.  As you can see, there is still not a headstone... which means it's been twice as long as my worst-case prediction of 3 years, ha!  I do think it will happen this year as the name plate that the funeral home provided broke so there is nothing there now. :'(  I was surprised as I've seen name plates still around that were placed in the 80's, but I guess those were more flush to the ground to avoid being hit by the mower.  The kids were all asleep and it was super cold, so we didn't stay long, but someone was there earlier and had cleared what snow they could. <3

I got several notes and messages today from people remembering Naomi's birthday.  Thank you!  It is appreciated.

5 years

Another year, another blog post.  This year felt more significant hitting five years.  Maybe because  of the number, or maybe because she would be starting kindergarten.  Each year gets quieter with those who remember (or at least those who say something), but it doesn't bother me.  What’s important to me is honoring this day with my husband and other children, and not so much the other stuff (although certainly still appreciated).  I still feel some internal pressure to exhibit our mourning in a certain way, but I’m starting to let go of that expectation.  I’m not sure if I’ll always do a birthday blog post or not, because I don’t want to just keep repeating the same stuff.  But it’s nice having the pictures of the other kids, so maybe I will.

I picked out and ordered an awesome footprint necklace that will have her actual footprints engraved on it, but there were some ordering glitches and I don’t have it yet.  We also have not ordered a headstone yet.  This year will be the year, I hope!  It’s sad to see her spot bare since they no longer allow any decorations on the grass at all.  We no longer have appointments in that area, so I don’t stop by nearly as often.

I’m trying to make a point of talking about Naomi more with my 2yo.  I tried prompting her yesterday with “and who is your other sister?”  She said, “Hay-ee??”  (Her best friend, Haley.)  It was hilarious and made me laugh, although not surprising since she guesses Hay-ee first for pretty much anything.

One thing that did happen was putting up some of our favorite Naomi pictures on the living room wall.  The frames had been hanging empty for a while (much to my mother’s chagrin), and my husband surprised me by getting them printed and in there for my birthday.  I had planned to get them edited before printing, but prints are not expensive so we can easily update them if/when the editing gets done.

Today we went to the graveyard and then had dinner at La Festa again.  We’ve done things a little bit different every year, but the La Festa tradition may stick.  The kids love to see the cooks spinning the pizza dough.

I love this tree and having the open field around it.

They spied a tree they could climb.

Enjoying a cannoli.

4 years

Another year has gone by, even faster than the ones before it.  I've heard the saying, "the days are long, but the years are short."  Well even the days don't feel that long anymore, just a constant swapping of sun up and sun down.  My Facebook memories continually surprise me with proof that my 23mo "baby" was scooting around on her butt one year ago.  We moved over the summer to a bigger house, which of course absorbed massive amounts of time and is part of why I wonder what happened to 2016.  The kids enjoy each having their own bedroom and always having a bathroom available.  We went from 940sf to 2,600sf, so it was a big change!  We were in the previous house for 7 years and are now renting it out to family, which makes it easier for me sentimentally than if we had sold it.

While the move was a local one and only a few miles away, I've noticed a social shift since last fall.  The people I saw frequently when pregnant with Naomi I now only see occasionally, and the people I saw occasionally I now only see rarely (if at all).  I also now have new people entering my life who haven't heard our story.  While I'm more practiced in talking about Naomi, she doesn't come up as frequently in conversations.

I think people, whether new or old friends, are still unsure what's safe or appropriate or whatever to say. So I thought I'd make it clear that it's totally fine to mention Naomi. I will not fall apart or get upset, I think about her all the time anyway. The last 4.5 years has taught me very clearly that I am an internal processor when it comes to my emotions, so just don't be surprised at my apparent non-reactions. I do still appreciate the love and concern directed my way, especially as time wears on.  The only time I have shut down conversations about her is when I'm leading breastfeeding support meetings, because I was concerned about not fulfilling my role in supporting the mothers attending.  However, I have probably been too scrupulous about that and should relax. :)

As I believe I have mentioned before, there is a local group of moms who have had a baby with acrania or anencephaly. I was the third member of this group and we are now sadly welcoming a sixth. Please pray for Carrie and her family as Winnie's birth approaches. In preparation for this, our group has been seeing each other more frequently. We have noticed that we each focus our warnings or guidance on the things that impacted us most, but these things vary widely between us. What is a central comforting thought for one is a passing thought for another. Yet we still understand each other like no one else can, and most importantly, we don't make assumptions or force "silver linings" on each other.  There is a viral story now about a couple with an anencephaly baby, and the public is loving it.  While there are times I felt perhaps I should seek a wider audience for thoughts I wanted to share, I have to say that I'm so glad we never gained that level of spotlight.

Anyway, on to today's events.  The big kids have school vacation this week and we decided to travel to Maryland for it.  I didn't want to miss Naomi's birthday at home though, so daddy could be with us (he couldn't come to MD).  I waffled between flights for today or tomorrow, nervous that flights today would "ruin" Naomi's birthday, but it all worked out smoothly.  I got all the packing done yesterday and we adequately planned out today so there wasn't any rushing.  One thing we did not really plan for though is how much snow would still be at the cemetery.  While we went from nothing to several feet of snow in the last couple weeks, rain had brought the accumulation down quite a bit.  I didn't even think to put a shovel in the van.  But our beloved snow shoveler (who I know would not want to be named) got there early and had already cleared a long path for us.  The "snow" that was there was pretty much solid ice, and had to be chopped away a square at a time.  We got there just in time to help direct him to the exact spot.  The cemetery had removed all our personal decorations last spring so there was nothing sticking above the snow to follow.  This year, we HAVE to get a headstone.  I distinctly remember saying in 2013 that if we didn't do it right away, we wouldn't do it for another 3 years.  Well it's been 3 years, so it has to happen now!

We picked up some flowers at Hobby Lobby and made snow imprints while the guys shoveled.

It was a little cold so the baby hung out inside the van to be out of the wind.  She loved checking out the backseat.

I was glad we decided to the cemetery before lunch and not after, as we might not have had enough time to fully find and clear the area otherwise.

Note the short detour left, before we pulled out old pictures to navigate more precisely.

The nameplate had been pushed down to ground level, making it harder to find.

When we got to the airport, I thought about how the kids wouldn't consider it a birthday unless there was cake.  Texted my mother to request birthday cake for tonight, instantly knowing she would completely take care of it.  The kids were thrilled and many Beanie Boos attended.  (It's also Roxie's birthday on the 29th.  Yes, Roxie the Beanie Boo.)

Assuming we get the headstone this year, I'm thinking it would be nice to have some sort of gathering or service once it's done.  So many of my local friends don't even know where her grave is.  Feel free to send suggestions or ideas my way for what to do for this.  My first thought was to all be there at the same time, but maybe something else where people can stop by and leave their mark somehow?  A sign in book wouldn't last long in the weather...

3 years

Another year, another blog post scratched out in the last few minutes of the day.

Quite different than last year, the snow was not a problem for today’s visit.

I had planned on getting balloons again but big sister didn’t like that idea, so we decided to get some new spring décor instead.  Big sister picked out the purple humming bird, big brother got the red dragonfly, and together they chose the pink flamingo for the new baby.  The red cardinal for hanging off the shepherd’s hook is for Naomi.  Not the most coordinated theme but the kids are happy and I like to keep them feeling involved.

Discussions over who gets to be next to who.

The cemetery has posted signs with new strict rules about what is allowed to be left at grave sites, and I don’t know when they will begin enforcing it.  I’m using this as motivation to get a real headstone this year and hoping they will let those of us who keep the grass trimmed and neat to continue as we are.

This year has been brutal.  There’s just no other way to describe it.  Our sweet and loving rainbow baby is more baby than I’ve ever had before…  When people asked about her right after her birth, the adjective frequently used to describe her was “feisty.”  She is strong and knows what she wants, which includes having me at arm’s reach for most of her waking and sleeping hours.  I’m not saying this to say I wish it were different – but it does mean there is not much time for reflection or deep thought that is anticipated in blog posts.  We are also in the process of trying to pack up our house in order to list and sell it for a bigger place.

I did not make a cake happen this year, but I did show the kids the video we played at Naomi’s funeral again.  (Next year I need to remember to show them earlier in the day so they aren't crying right before laying down for the night...)  Since I’ve made some new friends who haven’t seen it before, and some might like to see it again, I thought I’d put it in this new post.

2 years

I've always been a deadline-driven kind of person, hence repeating what happened last year with a late-hour blog post coming in just before midnight.  (Sorry mom, it's pretty obvious now that I do not have a future career as a blogger.)  Also like last year, I'm typing this up in a hotel room.  Much closer to home this time, just a little local weekend getaway and not out in warm and sunny San Diego.  Would love to trade the snow away for that again, but at least it means we were able to visit the grave today.  Kind of.  This is what it looked like right after Christmas.

And this is what it looked like this morning.

The crazy thing is that her area HAS been shoveled and snow-blown this season by friends and family.  It's just the snow has been drifting so much that all that work was filled in.  When we took the kids this morning, the kids and I stayed in the car while daddy got himself through the trenches of snow to place our balloons for us.

Each of us picked a balloon.  I chose purple, daddy chose orange, big sister chose red, and big brother chose green.  Unfortunately, my purple popped against the van as we were getting ready to place them.  But I was so relieved that it wasn't the red one that it didn't even phase me.  The red one popping would have meant a 30-minute round trip to replace it or be faced with dealing with an 8yo's broken heart.  I had originally thought we would release the balloons, but I offered that or weighing them down, and she chose to keep them there.

Big brother fell asleep on the way there and is usually cranky when he wakes up from a rare nap, so I prepared myself for that with some chocolate coins from the balloon shop.

Later in the day, I found out someone did go and shovel.  So after the kids were picked up for the weekend by grandparents, daddy and I stopped by before the sun went down.  Much better!

If we'd had snow like this in 2013, I think we definitely would have waited until spring for burial.

As far as updates since last year...  My last time pumping was 8 months, 2 days ago on June 24th, for a total of 16 months.  I slowed down gradually since my blog post on May 28th.  Skipping a few days at the end was strange, and I really thought I'd end up wanting to try "one more time" after that out of curiosity, but I didn't.

I got a positive pregnancy test on big brother's birthday, July 28, which is actually the day after I posted my last blog post.  I have never been an early pregnancy announcer, although I broke that rule with Naomi.  I knew I wanted the kids to be some of the first to know, and also know kids can't keep secrets.  And I wanted to know for myself if this baby's skull was intact before I had anyone asking me.  So we waited until ~11.5 weeks for an ultrasound, where we found out everything looked great, and didn't start announcing publicly until after 13 weeks, in October.  One advantage to this is that pregnancy feels a lot shorter when people don't know until you're already in your second trimester. :)  We also had a ~20 week ultrasound where everything still looked great, as well as finding out the sex of the baby.

Yes, Naomi is getting a little sister.  I'm 35 weeks now and no, we don't have a name picked out yet.  We usually have a pretty firm short list by this point, and Naomi had already been named for a couple weeks by now in her pregnancy.  Hopefully this changes soon because I'd really prefer some time to dwell on a name and be sure of it before putting it to legal paperwork.

In the picture above is the very first gift this baby got, little soft socks from auntie.  The little giraffe is something big sister picked out at the Holiday Shop at her school for Christmas.  And the onesie is the first hand-me-down we got this time, from a friend.

Physically, this pregnancy has not been easy on me.  It amazes me that I was able to parent and run a household with my husband 3 hours away during Naomi's pregnancy, when I can barely go to the grocery store this time.  My already low-levels of housekeeping have dropped even further.  I'm seeing a chiropractor regularly and that's helping a lot, but I still just can't do much.  The kids are now used to me asking them to pick up something off the floor that's only a step away from me, or that I have to sit down frequently.  My midwives say it's not because of being older, but just that subsequent pregnancies get harder on the body.  I think it's also that my gaps between pregnancy have gotten shorter each time, and I was really out of shape.  I'm actually looking forward to being more physically active after I give birth, which is a first.

I still have a ton of stuff to do to prepare for new baby's arrival.  Her dresser is in place with a few clothes in it, and I've purchased the few things we needed (new carseat and stroller).  I still need to do a big clothing sort to fill the dresser, wash all the baby gear, and most importantly, make some more space in this house so we have places to put said baby gear.  But having done this before, I at least realize that while it's nice to be prepared and ready, it's not a big deal to just wing it if things don't get done.  The co-sleeper and carseat can be done in half an hour, and those are the only true necessities.

When I first figured out my due date of April 2nd, it didn't feel that close to February 27th.  And I'm sure in other years it still won't.  But being 35 weeks and this big, it does feel a lot like February 2013.  Thankfully without the norovirus part.

Oh!  Almost forgot to share.  I have worn the Naomi Grace necklace for two years, but have been thinking it would be nice to have more variety.  (Some dear friends actually pooled money for me to pick out some items like this for Naomi's last birthday, and I do finally have some things in mind, but I have not brought it to fruition yet.)  So this is what my husband picked out for my birthday, one birthstone for each of my four children.  Yes, that is April's stone you see there, but he assures me that he checked and we can swap it out for March's stone easily enough if baby comes early.

Facing the idea of bringing home a living baby is fresh and scary in a new way, different then when I had my first.  I'm sure it will remind me of exactly what we missed out on with Naomi in a way that the faint memories of her older siblings don't register.  But for now, we stick to what we've been doing for years now - prepare however we can and wait on the rest.

Happy 2nd birthday, Naomi Grace.  As your sister wrote on her balloon to you, "we love you and wish you were here. xoxo"

Rachel's Race

Next Saturday, my friend Stacy's non-profit Baby Rachel's Legacy will be putting on Rachel's Race.  It is both a fundraiser and a way to spread awareness of anencephaly.  (Which is technically a slightly different diagnosis than acrania, mostly related to suspected causes, but same end result.)  There will be four different anencephaly/acrania families represented at the race, including Team Naomi.

I have been very negligent in preparing for this event!  There are 16 members right now, with 12 adults and 4 kids.  I've had one donation come in from a family member.  But I didn't get t-shirts designed, haven't gotten any donations from local businesses, haven't done fundraising, etc.  So now?  Now of course I am going to see how many of those things I can get done in six days.

If you are a local friend who wants to join in the race and haven't registered, you can do so here.  You can join Team Naomi as either a runner or walker.  The paths for each are different and the walkers will actually come right by Naomi's grave.  Naomi's grave is a few rows away from Rachel's grave and I will be manning a table in that area with pictures of our babies and other info and mementos.  If you aren't local, there is also the option of joining as a "virtual walker."  It's basically a way to donate and intended for those unable to join due to geographical distance.

Right now Naomi's grave is decorated with a ladybug theme and some yellow accent garden stakes.  Instead of doing official team t-shirts, I am asking everyone on Team Naomi to wear a red shirt.  I have also made a Facebook group for Team Naomi members to connect with each other for planning logistics.  If you aren't in there already, it's because I don't see you on the event list for the team.

Now for the fundraising...  Baby Rachel's Legacy has officially gotten their 501(c)3 approval!  So all donations are tax deductible.  If you are able and willing to donate, you can either do it through the paypal tab here or you can give it to me directly.  Giving it to me directly means nothing will be lost in paypal fees, but do whatever works better for you.  I just ask that if you pay online, let me know so that I can track it as part of total funds raised for the team.  We will not be able to access online donations the morning of the race to account for it.

I think that covers it, but let me know if you have any questions.  See you Saturday!

This was taken in the middle of May, which is the beginning of spring here.  The grass has grown in nicely since then.  I have a new kissing ball made by Stacy that will be hanging on the shepherd's hook the day of the race.

15 hours, 15 months, 100 gallons

On my birthday post, I said I "might go for just a bit longer."  Well I guess I've done that.  Dropping to only two pumps per day made it incredibly easy to just keep going.  About a month ago it occurred to me that weaning at 15 months would be cool since Naomi lived for 15 hours.  Then a little over a week ago I was waffling, so I thought I would sit down and calculate my ounces again, since I had not done that since the birthday post.  I was blown away to see that I was at 99 gallons!  I had really thought I was too far off and output was too low to reach it.  Not only that, but crunching numbers showed me that if everything was maintained I would hit 100 gallons at exactly 15 months.  The beauty of these numbers all aligning makes all the measuring worth it. ;)  (Although seriously, if I am ever exclusively pumping again for any reason, I won't let myself even start tracking it this closely!  Measuring to the milliliter is nuts.)

Because I didn't wind down over this last week, I'm not actually done today.  I am only getting 12oz a day (less than a third of what I was getting a year ago), but I don't think it's healthy to go cold turkey, so there will definitely be some more gentle weaning time.  It is really hard to mentally accept the idea of not pumping anymore though.  All that stuff they say about creating habits is true.  The groove of sitting down to pump, pouring and freezing milk, washing parts is entrenched into my day.  It still takes great mental effort to even grasp breaking this routine.  It's my autopilot that my day is built around.

I hit the 100 gallons with my morning pump, but forgot to take a picture.  Between that and knowing I won't be home tomorrow morning, I decided to do "one more" full hour-long pump tonight, shown below.  So I'm not done like I thought I would be, but I'm closer, right?  That's what I keep telling myself. ;)

(Six ounces.  In my pre-EPing days, this would have looked like a lot to me!)