We Are Good

I have the amazing honor of guest posting for Nichole at In These Small Moments today.  Her writing is unspeakably beautiful and she has featured many a talented writer in her Small Moments Monday series.  I had to collect myself and pretend this type of thing is normal for a little blogger like me before I could respond to her email in which she asked (in her eloquent words, of course) if I would guest post.

So if this is your first time visiting and you would like to know the rest of the story here is the "after" and if you are not interested in knowing what happened next, here is a slew of cute pictures of my kids...

We Are Good

Life showed us its fragility and we wept and yelled and cursed at the unfairness of it all.

But we still had new life here,

to cherish and to nurture and to will to survive.

So we waited

and we dreamt

of the day they would be home

and our family would be together, not whole.  No never whole, but together

and we are good,

good plus one more.

We are brought down by grief but lifted up by laughter
and we are good.

We appreciate the quiet moments with space to breathe in the sorrow

and the loud ones with noise to drown it all out

and we are good.

We will never be full or whole or complete

but we are life and love and everything in between.

And we are good.

A New Dating Service?

I'm thinking of starting a dating service.

A playdating service...

somewhere you can put in where life has taken you, your parenting style, what Mommy traits drive you insane and what put you at ease.

a place to cut all the crap and make finding a mom who you get along with, and has nice kids to boot, a much easier process.

Since having kids I always had this vision of perfect playdates, coffee with moms while our children play peacefully, swapping recipes and clothes our kids have outgrown... the quintessential life of a stay at home mom.

Autism and preemies and loss and then getting pregnant again before my preemies could even venture out in public threw a bit of a wrench in my plan and it seems I have just joined the land of the living this past year.

And finding a mommy AND kid match is hard.  The mom can be great and then low and behold my son's on his back after a cheap shot from her never disciplined, candy-eating-in-the-morning, terror of a boy.

Or the kids can be off to a good start, clicking in whatever way three year-olds can manage and then the mom says something genius, and telling.  Telling me that our conversations have no future.

And my playdate visions deflate.

But I am learning.  I am learning that I am not going to find the mirror image of my family out there but if I give it time our lives will gravitate to each other.  I will bump into another mom on the playground who is sweating as I am because she also has more little ones than arms and not one of them is coordinated enough for the tall slide.

Or I will find the perfect friend in someone who is balancing triplets and special needs and coping with her own feelings of loss of a different kind, who doesn't flinch when I talk about all of my children and we will click and could close just about any restaurant, spilling tales of our crazy lives and laughing about things that aren't funny when they're happening.

And that is the perfect in the imperfect.

That there is no match out there, whether you have 2 kids, a dog and not a struggle to be had or whether you have a bit of an unconventional brood and are forced to search for moms who have walked your path, there is no magic service to help you find the matching mom and kids of your dreams.  You have to find them, or they will find you.

My friends from around the country, each with surviving triplets.

And when you do?  You will be rewarded.  With conversations long enough to drive a wait staff insane or kill a phone battery, with recipes they found (without the dairy of course), with a chapter long comment on your blog to tell you they get it or a few short sentences to say they don't but they are here anyway.

Since all that has happened from the time I became a mom and all that has not, I have often felt like I am on another planet.

In fact I think I might be.

But having visitors makes my planet a pretty comfortable place to live.

Edited to add: If you happen to have had a child when you were a bit too young who was then diagnosed with autism, got married eight years after that only to struggle with infertility, get pregnant with triplets, lose a child and then get pregnant again without even trying EMAIL ME, we are destined for the perfect playdate :)

Home

Home is a name,

a word,

it is a strong one;

stronger than magician ever spoke,

or spirit ever answered to,

in the strongest conjuration.  

                               ---Charles Dickens

After 77 days of waiting for home, Daddy brought you through the door three years ago today.

Happy Coming Home Day, my little man.

The After

After being born weighing 2 lbs. 10 oz,

after two cerebral hemorrhages,

after weeks on a ventilator,

after transfusions and procedures and tests and the endless beep, beep, beep of monitors,

after 71 long days in the NICU...

my little Baby A came home, three years ago today.

Amid all the chaos of life as it stands, there is not a day that goes by that I do not shudder at the thought of Before,

blink in amazement that we made it to After

and count myself lucky that we have a "Coming Home Day" to celebrate at all.

P.S. Could there be a better shirt??

My Grand Plan

I have been tossing around random thoughts lately that have ultimately formed into my Grand Plan.

After we lost Hadley I felt like I was the only mom on the planet to lose a baby, let alone a 2 day-old preemie who was one of triplets.  Never in a million years did I think I would connect with other moms and bloggers in the same position who would inspire me to put one foot in front of the other each day and give me a shred of hope that I could get through this.

Over the past few months I have connected with lots of autism moms.  Never have I connected with so many people who get it.  Who knew there was a whole world of autism bloggers I had yet to discover?  Apparently, a lot of people did and I have been living under a rock.

So on to my idea...

Every Friday I am going to feature a blogger who may have struggled a little, or a lot, but keeps on trucking.  If you have experienced any type of trial whether it be loss or infertility or illness or have made it through divorce or a high risk pregnancy or are raising a special needs child or if you have done something crazy like trained for a marathon while taking care of 10 kids or had a baby when everyone said you were too young or too old I want to hear about it.  I have no formal list of what qualifies so if you feel like you made it or you are still making it let me know.  

My goal is to connect bloggers to other bloggers who might see a glimpse of themselves and know that they will be all right.  Plus there is nothing like new followers who walk the same walk and a new button too.

Here's the rules:

-Send me a blog post that screams YOU.  The post does not have to tell the story of your struggles, in fact, I would rather it not.  Just share something that you are proud of or that gives readers a feel for your blog.

-Email a direct link to the post you would like featured and include a description of your struggle/feat,/obstacle/magical powers in the body of the email.  Send it to fourplusanangel@gmail.com and I will feature someone new each Friday.

Oh and I know what you are thinking, if you are wrestling with that uncomfortable feeling of patting yourself on the back, look at it like you are sharing your I-made-it-through-so-you-can-too story with someone who just might need to hear it or if you feel like you are not quite comfortable calling yourself an expert yet, that is okay too.  I guarantee there is someone out there feeling like they are ten steps behind where you are right now.

Hope to hear from you!

Limit Pushers

The bill to mandate insurance coverage for people with autism in Michigan did not make it.

After a long tireless fight, it did not pass the Senate last night, or this morning.

I'm disappointed and feel like we just took two steps back AGAIN but I am also I'm grateful.

I spent last evening, along with most of the autism parents in Michigan, checking face.book, twitt.er, the Michigan government sites and text messages waiting for news from the parents who have given up days and months and years of their time to get this bill passed.  I have to say I have been humble by their efforts.  The amount of time they have spent on this cause not just for their children but because they saw the bigger picture and knew this was needed for the many children of Michigan.

I'm not sure why it has taken me this long to fully grasp this but over the last year or so I have finally understood just how much work has been done by other parents of special needs kids before me to make my life easier.

There is no doubt in my mind that the fact that Ashlyn has the opportunities she does is because of outspoken parents who pushed the limits of the past and the reason my preemies benefitted from so many advances in neonatal care is because of the many preemie parents before us.

Many years of limit-pushing ago

I made my phone calls and sent my emails for this insurance bill but I did not make a trip to Lansing or spend my days with lobbyists and without the many parents who did, this bill would never have seen the light of day.

In general, this is a crappy day for parents of children with autism in our state.  Autism is not the easiest diagnosis in the world to swallow and then to find out that your state is not willing to give you a helping hand?  Well that is a little bit of a slap in the face.

The one thing that we can take comfort in is the fact that if they won't help, there is always another parent out there who will.

So if you are trying to keep up the strength to advocate for your child in any area, whether it be to get them included in general education, for a medical test your gut is telling you is needed or just to get that grade changed on the history test you know they should have passed don't give up.

You are not alone and there might just be a parent or two waiting to walk on that road you are paving.

Issues

McKenna is plugging away in physical therapy, well not really plugging away, the girl barely moves a muscle but we are taking her every week just to kid ourselves that she is actually getting something out of it.

So today she resumed her usual, I'm not doing a thing here stance and the therapist decided we were going to push her limits a bit.  Mark went with her and I stayed with the boys and as we rounded the corner for our millionth lap around the building I saw McKenna heading down the hall on her little therapy bike crying her eyes out while pedaling.  Now, the rational part of me knows that sooner or later the girl does have to do some work and the therapists push-her-a-bit strategy is necessary but the irrational Mommy of the 2lb. 10oz. preemie who spent the first three months of her life crying in a NICU incubator wanted to give the physical therapist a little push of her own, take that stupid bike helmet off, unstrap her feet from the pedals and head out the door, never to return to that awful place again.

So I'm thinking I have issues (if you know me in real life or have been following me for long I'm sure you are laughing at the fact I'm saying this like it is a new thing) but really, I like her physical therapist and I know she wants the best for McKenna and I know McKenna needs to get stronger, but the minute I hear that little girl crying I flash right back to the days and days and days I spent helplessly watching her fight for her life in the NICU and I start having Ally McBeal-like visions of what should happen to whoever is making her cry.  (I hope the one person who watched that show besides me is reading this so 1 someone gets my visual.)

Ms. McKenna's first home

I'm not sure what the point of my ramblings are today other than that there are a lot of levels to being a mom.  Whether your kids are sick or healthy or preemies or angels, raising kids is not for the faint of heart or for the mildly delusional.

I am going to have to get myself and my case of post traumatic stress disorder together.

Either that or just go back to school to be a physical and occupational therapist, teacher and pediatrician so that I can get my kids through their first 18 years my way :)

No one told me this either

We are moving.

Moving day is one day away and if you walked into our house right now you would never know we are going anywhere.

I have found another aspect of losing a baby that know one told me about.

Packing is paralyzing.

Every time I open a closet or drawer I stumble upon one more Hadley thing and I don't know what to do with it so I stop and try to start again somewhere else.

A year or so after we lost her I was able to fumble through her NICU items and fold up her unworn pink.  I put everything in a pretty box and put it up in our closet.  I cannot look in there often but I never forget it is there.

What I forgot about was the hidden pieces of grief.

I forgot about the social security card under my socks that had the audacity of showing up in our mailbox with the others and the "you can make it a little longer" note written by a dear friend of my mom's while I was still pregnant, hiding under my sweaters, holding beautiful thoughts of all I would look forward to in my life with triplets, and the cards and vases and dried flowers from her memorial, all more than I could bare to look at on a daily basis.

I had even forgotten about the bracelet.

When you have a baby in the NICU you get a hospital bracelet to wear that matches theirs.  You wear it until your baby comes home to identify you as the parent.

Mark and I had three.  As each baby was born we looked at each other and laughed in amazement as the nurses put on one after the other after the other.  We were in awe of our arms full.

After a few days of wear we each needed one less but I never took mine off.  I wore it until the ink started to fade and then carefully removed it because I was afraid to lose one more detail of her life.

While packing up my drawers today it slipped right into my hand along with grief too heavy to carry and I was useless once again.

I don't know how to pack up my daughter and the life she never had.  I don't know what to do with the memories collected on her shelf or her ashes or the clothes she did not wear.  A cardboard box falls entirely short.

I'm not sad to leave this house because all of the important things are coming with me.

I'm sad to do one more thing without her,
to go one more place without my whole family,
to keep on going with pain that is easier to put in a drawer than to face.

There is no guidebook for living after losing a baby, no section on how to pack your child's ashes, so I am learning I have to write my own...

And as this chapter begins I have decided what to write.

I will bring her to her new home just as I brought her to her first.

I will carry her.

The one we missed

A friend of mine has triplets just a few months older than mine and while taking my daily scroll through face.book I noticed she had posted a great look back at pictures of their Halloweens thus far.  I looked through her pictures, mentally checking off what my kids had been each year, and wondered why I was one year of costumes short.

And the moment I remembered I wondered how in the world I could have forgotten.

I'm pretty sure that when your children are in the NICU you are in some type of time warp in which you don't really remember anything other than what kind of day they are having and if it has brought them  closer to or further from coming home.  The fact that the world was still turning outside and that holidays were coming and going was always a shock to me.   I remember heading to their sides at the end of October as I did each day and being caught off guard by the little orange pumpkins taped to their isolettes.  Halloween was our first official holiday in the NICU.

I hated it.

I did not like that someone else decorated my babies' isolettes and that I could not go buy tiny little Halloween costumes.  Nevermind the fact that I had just lost one of my daughters and was still waiting for the day that my little McKenna would even be healthy enough to hold.

But when the nurse took out this bright orange hat, knitted by one of the hospital volunteers, she made my day.  She handed my 2 lb. little man to me and I covered up his shiny bald head and took his picture with my phone because it was all I had (darn it!) and held him for as long as his little body could handle it.

And this was our only Halloween that wasn't.

Watching them now, their faces bursting with excitement of the impending sugar-filled day, you would never know that they had skipped a beat, or a Halloween.

Tonight I dusted off our box of NICU memories and showed Parker his first Halloween costume.  As he held it my mind flashed back to how fragile he truly was and I was reminded that my tiny trick-or-treater is a big, huge miracle.

Parker and his hat and McKenna holding the bow that was in her hair that day

One last visit

Today we went for our NICU follow up with the developmental clinic at the hospital where the triplets were born. The kids' growth and development are great and they were very impressed with how smart they are.  We have been officially discharged from their developmental clinic and it feels great to know that my little survivors beat the odds.

I, however, pratically had a nervous breakdown going to their appointment.  We have not been back to that hospital since their last developmental check up over a year ago and I have a complete love/hate relationship with the place. 

I hate it because it is the place where Hadley died. 
I love it because it is the place where Hadley lived. 

While we were there today I had visions of myself coming back there for years and years to come just to hang on to the only place where she ever lived outside of me.  We took the kids up to the NICU floor so they could peak in the window and someone opened the door and I was consumed by the NICU smell that surrounded us for so many weeks.

I want to go back again and go inside and just sit there and listen to the sounds and remember our time there but I also never want to go back again and hear any of it and remember the awful day our lives changed.  It is so conflicting to have the place where your children began their lives also be the place where one of your children never left.

I am reading the book "I Will Carry You" by Angie Smith, a woman who chose to carry her daughter to term despite being told that she would not survive to her birth, and I have to say I am not in the place where she is on her journey but I am trying to get there.  One thing she talks about over and over is being grateful for the time she did have with her daughter and not getting lost in the grief of her death.  I am trying so hard to do this.

I am so lucky to have had the experience of carrying triplets and am so lucky to have carried Hadley for 28 precious weeks and to have gotten the chance to meet her and hold her, even though the first time was also the last.

I remember the day after they were born being in the NICU with Mark and going from baby to baby to baby, getting updates from each of their nurses and feeling completely, happily overwhelmed by the fact that we had just had three babies at once.  We were giddy with the excitement of our new babies but didn't get to live in that moment very long.  I keep trying to hang onto that feeling because we were blessed with three babies and I want to have good memories of the place that brought them into the world.

So today, we made good memories there.  We took our little survivors up to the place they spent the first three months of their lives.  We talked about how far they had come to anyone in the hall who caught onto the fact that they had once called the place home, we visited my favorite nurse who took care of me during my 10 week stay before the babies came, we showed them incubators and just let them roam the place.

Today was a good day at the "baby hospital", as the kids called it, and I was so grateful to carry Hadley's memory with me as we walked out the door one last time.

Mark and the kids looking in the NICU window

The kids, on the other side of that window, two and half years ago

We walked

Today was the March for Babies.  We were the ambassador family this year so after a very emotional speech we enjoyed the walk surrounded by our amazing family.

Mark and I were completely humbled by the amount of money our family team was able to raise and how many people came to walk with us despite the grim weather forecast.

I can never say enough how much it means to me that so many people walk with us to keep Hadley's memory alive.

As my children grow, I realize that this walk is not just a way for us to give back but it is a day for them to understand what they have overcome and a chance for them to spend time with their sister's memory.

Tonight at dinner I asked the kids what their favorite part of the walk was.

My little two and a half year old man's answer?

Hadley.

Ready to walk

There are only 4 days left until the March for Babies and I can't wait.  Last year I was pregnant with Sawyer and was put on bedrest the week before the walk so our huge team of family members walked without me.  To say I was disappointed to have to miss it was an understatement.  I think I cried the whole time they were gone (I'm sure pregnancy hormones played a roll in my blubbering).  Of course I was off my feet for a very good cause and managed to stay pregnant until 34 weeks which brings me to why we are walking.

I have had four preemies, one who never got the chance to come home.  Our family is walking for our preemies and our angel.  I can't wait to spend a day dedicated to Hadley.  I love every minute of the preparation for our walk because this is one of the few things I can still do for her.

When we walk on Sunday I will be thinking of all of those other loss moms out there I have met along this journey.  I know it will be emotional and I will be thinking of Hadley every minute but I also will cherish the fact that I have a stroller full of survivors to walk with me.

Our team is very close to our goal so please donate if you can...

Finally #77

Two years ago today marked the last day we had to visit one of our children in the NICU. On his 77th day in intensive care my little Parker came home. Parker started life at 1 lb. 14 oz. and left the hospital barely over 4 lbs. To say he beat the odds is an understatement. Today he is an amazing little boy with endless energy and the sweetest, sweetest heart.

We love you so much Parker and will always remember what a fighter you were!

Daddy bringing Parker home, finally no more wires!

First time holding my babies at home

Parker today