Mania

It has been a long time since my last post, not for lack of things to write about, but, I think, for fear of facing it.  I find myself lately in a manic haze.  I have been functioning on very little sleep, lots of coffee and little to no down time.  Part of this, of course, is out of necessity.  Being a working and taking care of a house, 3 kids and a husband takes a significant amount of work after all.  A large part of this mania, however is an avoidance.  I find myself avoiding down time, time when I can think things through and reflect, clinging desperately to the shallow sense of happiness that I am precariously maintaining.  I have been wanting for weeks, to look through Addy's memory box, though I keep finding other things to fill up my time, to delay the deep saddness that I know will come with it.   I realized this morning that I have not written in Liam's baby book in 3 months.  I love writing in his baby book, though there is always the pain that I have nothing to add to the pink baby book underneath his on the shelf.  My only real down time during the week is my drive to work and back.  I have over an hour in the car each way with no distractions and noone between me and well, myself.   I drive running through my grief in my head, writing and rewriting journal entries that I never actually commit to paper.  I often find myself crying during at some point during the drive.  Sometimes it is just a few quiet tears and others it is pull-over-to-the-side-of-the-road-sobbing.  At the end of the drive however, I pull myself out of my thoughts, wipe my face and head back into the craziness.  There is a part of me that enjoys this time and part that dreads it.
In my day to day craziness I am able to remain above the surface, to bury my pain and pretend it is not there.  I think of Addy constantly, though in a superficial way that I hate myself for when I stop and think about it.  I think this is because when I stop and really remember her, when I confront all of the should have been's and could have been's and try to reconcile them with my current reality, the discrepancy is just too painful.  I never used to fully understand when other mom's in my support groups would say that they hated seeing other people's babies.  I mean I understood why, I just never felt that way myself and could not connect with it.  I think I finally understand it.  For me it is not so much babies, although baby girls do get me a little, it is healthy twins.  As happy as I am for my friends with twins, I hate seeing facebook posts about their beautiful healthy twins doing cute twin things.  It started out as a little pang, a tiny flip in my stomach as I read.  Now, it has turned into all out anger.  Not anger at my friends or their kids, anger at the universe, anger at the should have been.  That should have been me posting about my twins chewing on each others toes, talking in their own special language, starting kindergarten, etc.  I feel it every time I see a mother with twins at the store.  I am acutely aware that I should have had something to talk about with this mom.  When I was pregnant I signed up for our local moms of multiples group.  I couldn't bring myself to stop the membership and so the e-mails have been coming for the last year.  Some of them I read and some of them I skip but they were an odd comfort.  A couple of weeks ago I got an e-mail that it is time to renew my membership.  It hit me all of a sudden that that was it, there goes another piece of the way my life should have been.  Of course I could renew the membership but that would be a little crazy, even for me.  No, I will let it lapse and again mourn a piece of my should-have-been life.
As I sat down to write tonight, I was fighting myself.  I now find that I have found the sense of calm and peace that I always find writing here.  I hope that this means that I will be able to find more time to write and that it will be easier to get started next time.            

Merry Christmas Baby Girl

Another first has come and gone without Adeline.  Christmas and the holiday season is officially over and Addy was so very missed throughout the holiday celebrations.  We tried to remember her in every way we could, she was here with us in spirit even though she could not be here in person. I put so much thought into Adeline's first Christmas, knowing that it would be one of the most difficult events since she left us.  Christmas has always been my favorite holiday, though I found it very hard to get into the spirit this year.

One of the first things I did for Addy was this memorial ornament.  I have been looking online since probably September, knowing that I would want the perfect ornament, but had alot of difficulty finding one.  In the end I opted to make on and designed this angel baby ornament for her.  I also made one for all of our imidate family.   Making, baking, painting and glazing 10 little angel babies was so very therapeutic and helped me to mentally prepare for the season.

We also entered a bereaved parents ornament swap.  I made an angel baby ornament for a little boy in Connecticut with a surviving twin sister.  We received this beautiful box ornament   I was blown away by the amount of love and effort that went into this and We will be keeping it out all year long.

Sawyer had a blast making ornaments for everyone in our family this year.  All on his own he opted to make this ornament for Addy.  He put so much though into it and it turned out beautifully.  I am so proud of that boy, he is such a wonderful big brother.

When buying stockings for Liam and my niece Brittany, our two new additions this year, I couldn't leave the store without one for Addy.  It just didn't seem right not to have one.  It was so wonderful to see her stocking hanging up with all the rest of them.  Christmas eve we took down all of the stockings to fill them.  All of them that is, except Addy's.  Here it is hanging Christmas morning, not toys, no orange in the toe, just here to remember her.

After countless hours spent scrolling through every memorial and ornament website I could find, I accidently stumbled upon this at hallmark.com.  It imidately caught my eye as this is exactally the picture I wanted to capture with Liam and Addy's first christmas ornament.  They were out of stock online and so I posted al all call to facebook for people to keep an eye out for this in stores.  Literally within minutes of posting a wonderful friend from college wrote to say that she had grabbed the very last one that Amazon had and it was on the way to my house.  It made it just in time for Christmas day.

My dear friend sent these beautiful ornaments which arrived just in time for Christmas.  I love seeing her name on the tree with her brothers.  This is where she should be and always will be in spirit.  She will always be the sister to the two most wonderful brothers a girl could ask for.

This was my Addy ornament for the year.  A beautiful pair of ceramic wings in my stocking for my beautiful angel girl.

This was Liam's Addy ormanet for the year.  Across the front of her gown it says "Guardian Angel 2012".  This will forever be the year that he lost a sister and gained an angel.

Adeline's "A" is now hanging on the tree along with Liam's "L", Sawyer's "S", Brittany's "B" and my 27 year old "E".  My dad has made one of these letters for every baby born into the family and I am so very glad that Addy got hers even though she wasn't here to see it.

This was my favorite gift of the year, and definitely the most difficult.  Addy's "A" was attached to the front of a package with very familliar, battered wrapping paper, that I had caught glimpses of many times in the top of my dads closet.  This package was wrapped up 18 years ago for Dobie, my grandmother.  She died before ever getting the chance to open it.  This Christmas we opened it and remembered her and Adeline, both forever loved and missed.
I know that there will be many more Christmases without Adeline.  Many more where we will miss her and feel her absence as her brothers race down to see what Santa left behind.  All of our happy moments will forever be tinged with the sadness of her absence.  So for this year, Merry Christmas Baby Girl, I love you.

7 Months Gone

7 months gone and a week to Christmas.  This has not been a good week, or a good month for that matter.  I have been trying very hard to get into the holiday spirit, to find my usual love of this season, but it has abandoned me.  The events of the past week have intensified this feeling.  I had happily reclaimed some of my sanity, some joy in life, though that seems to be abandoning me as well in the wake of the terrible tragedy in Connecticut as well as the loss of a friend of a friend.  I find the anxiety returning, I am again, unable to listen to the radio for fear of Christmas music, songs about loss or news of the Connecticut shooting.   I know that this will again pass but it is a feeling that I was glad to be rid of.

As Christmas approaches much too quickly I find myself dreading the day and the emotions that I am sure will surface.  I have still yet to find a first Christmas ornament for Liam.  I was unable to decide if I wanted to just get him one, get one for each of them or get one for both.  Unfortunately, I have procrastinated so long that it is looking like he may not have one on the tree this year at all.  I did make ornaments for Adeline and have found several angel ornaments that will be in my stocking Christmas day.  She has a stocking hanging on the wall with the rest of ours.  I just couldn't leave the store without hers when I went in to get one for Liam and Brittany.  As I look at it up on the wall it looks right, like it is exactly where it is supposed to be.  I am dreading Christmas eve when we will take down all of the stockings to fill them, all of them except Addy's, that one will stay on the wall.

I did have a nice moment at work yesterday when I was asked about the babies by a co-worker.  She was aware that we lost Adeline though, in the moment had forgotten and asked about "them".  After quickly correcting herself she came back to her original question asking how they were both doing and asking to see pictures of Adeline.  She listened to all of the things we were doing to remember Addy this Christmas and looked through the pictures of both babies on my ipad.  I always love talking about Adeline but this was so needed and so appreciated this week.  I think about her every minute of every day.  Everytime someone asks me how many children I have, or I have to sign a card from us all I say her name in my head.  I did not send out Christmas cards this year because I couldn't decide if it would be harder to write her name 100 times or to have to leave it out 100 times.  I know that things will settle out some day. I am sure that while it will always be difficult, next Christmas will be easier than this one.  For now I will settle for remembering her and holding it together enough to give the kids a good Christmas.  I will plaster on a smile and pretend to be excited for Christmas in the hopes that someday the joy will come back and so will the real smile and holiday spirit.   

Brothers

Oh my sweet girl, if only you knew what wonderful brothers you were blessed with.  Sawyer, in particular, has amazed me throughout my pregnancy, your short little life and the 6 months since you left us.  He loves you so very much and misses you every day.  I know that he thinks about you all the time because he frequently talks about you.  For a three year old, he has an amazing grasp on the concept of death and often talks about how sad it is that you died and how he wishes you could come home.  He is certain that you are still with us though and informed me the other night that the shadows in his room couldn't hurt him because he has a sister and she is an angel.  I am sure that he is right about this and you are watching over both of your brothers. 

Sawyer was recently given a little baby girl doll.  It is just about the same size that you were when you were born, though lighter.  He has latched onto this "Adeline's baby" and has even named it Adeline.  He wanted to dress her and decided that she needed a diaper so I dug through your box in the basement and pulled out a couple of newborn outfits and a pink diaper.  He happily dressed her, undressed her, changed her diaper and redressed her for the better part of an hour.  For your crazy energetic big brother, this is quite an accomplishment.  He even made you an ornament for Christmas this year.  It is beautiful and I think is the most intricate, delicate thing that I have ever seen him make.  He even asked me to mix up pink paint just for you.  It will hang on our tree this year and every year, along with your remembrance ornament, and you will be so very missed this and every Christmas.

Liam misses you as well in his own way I believe.  When he first came home he would have moments when he was inconsolable, just wanted to be held and snuggled and even that wasn't enough.  I am certain that he was, and still is, lonely without you.  As a newborn he would stare intently at the shelf with your ashes and angel next to his bed.  Now that he is bigger and interacting with objects he has several favorite toys.  Many of them were supposed to have been yours.  He is particularly fond of your pink stuffed elephant and falls asleep talking to and snuggling with it every night.  I cannot help but picture you in the co-sleeper with him.       

Although your time here was far too short, you were blessed with a loving family and wonderful siblings. You are loved and missed more than you will ever know.  It warms my heart to hear Sawyer talk about you and claim your toys for his own because they are yours and need to be taken care of.  I love to watch Liam snuggle with your things and play with your necklace when I am holding him.  It is comforting to know that they will still be loving you and remembering you long after I am gone.   

A Whole Half a Year

As life has gotten back to a new normal it has become increasingly difficulty for me to sneak away from my busy life to write here.  Who knew raising two small children, mourning another and running around trying to keep up with the schedule of a teenager could be so hectic, right?  Last month was the 6 month mark, a whole half year without my baby girl.  Somehow, I think I dreaded this more than the one year mark.  Half a year sounds like such a very long time and yet it seemed to go by in the blink of an eye.  I often think of this as the "lost summer."  Lost to the fog of grief, the shock of our new, surreal reality.  It does not seem possible that 6 months has passed until I look at my beautiful little 6 month old baby boy.  Liam has grown so much in the last 6 months but the more he changes, the more he looks like Adeline.   I was looking at pictures of her the other day and was struck by the similarities in their features and build.  I cannot help but wonder every day what she would have looked like.  Liam went in for his 6 month check up last week and measured in the 11th percentile for weight and 46th percentile for height.  I can't help but wonder where Addy would have fallen on those charts if she had lived.

It is amazing to me how the past 6 months have gone by as an eternity and the blink of an eye simultaneously.  I cannot believe that it has been more that half a year since I last held my little girl in my arms.  It feels like it was just yesterday. I am continually amazed that the world has continued on without her, that daily life has continued even though our world changed forever.  Every day that passes seems like one day further away from Adeline, one day for the memory of her, her face, her smell, her weight in my arms, to fade.  I would go through all of the pain of the past 6 months again just to have he in my arms for a few more minutes, to give her one more kiss, to see her beautiful face one more time.       

The days have gotten easier, in a way, as time has passed.  The grief is no longer debilitating the way that it was, not as a rule anyway.  This is both comforting and disconcerting.  It is, of course, nice to regain so sense of control in my life and be able to function as a mother and wife.  However, there is still a part of me that wants to hang on to the grief.  I feel as though the grief and pain keep me close to her.  Although the passage of time and the process of healing are inevitable, there is a part of me that dreads it.  As we get further from the day of her death, people have less patience for me when I talk about her.  As we come to the holidays, a time that I knew would be difficult, I find myself talking about Adeline more, about the things we will do to honor and remember her on what would have been her first Christmas.  I often see in the faces of the people around me an impatience and discomfort or lack of interest.  I have always been aware that this is not a popular subject though as time passes it is becoming less acceptable for me to talk about her, as though I should somehow have moved on by now.  Though life has gotten easier, I have not moved on, I still miss Adeline everyday, picture her here with us constantly and would give anything to have her back. 

Giving Thanks

As we move into the holiday season I have done a lot of thinking about what I am most thankful for.  I have been meaning to write this for several weeks, though finding a few spare moments is pretty difficult right now.  As I look at all of the blessings in my life I realize that, above all, I am thankful to be thankful.  Thankful that the events of the last 6 months have not left me so jaded that I cannot see the beauty in my life, all that I truly have to be thankful for.  If anything, loosing Adeline has made me more grateful for the simple things in life and more aware of the blessings that stand in stark contrast to her loss.

Above all else I am thankful for my children, all of my children.  I am thankful for every hug, every smile, every tantrum, every 4 am feeding.  I am thankful for the time that I got to spend with my beautiful baby girl and all of the memories I have of her.  There is nothing in this world that gives me greater pleasure than simply looking into the eyes of my beautiful boys.  Just to look into their eyes and know that they are happy, healthy and alive.  I have definitely noticed a marked shift in my parenting style and level of patience.  There are, of course, still times when I get frustrated or just want a few minutes to myself. Overall though, I have a renewed devotion to my children. I cherish every moment with them, even more so than before.  The little annoying three year old things that Sawyer does do not get under my skin the way that they used to.  Even on days when he is being particularly difficult, I step back and look at him and thank God that he is alive for me to be fighting with.  He is the sweetest, most caring little boy I know and it warms my heart to hear him talk about his sister, remember her and miss her. When Liam has one of his no sleep nights and I am awake for hours on end trying to get him to go back to sleep I find myself thinking about how much more difficult nights should have been and being thankful to be awake struggling with a cranky baby.  They have both been my reason for living, for staying sane and getting up every morning.  Without them, I would be lost and I am thankful every day to be their mama.

I am also thankful for my wonderful husband.  He is my rock, my strength when I have none left.  He is the force that gets me going when I can't move or makes me stop when I get out of control.  When I found out that Addy was dying, one of my biggest fears was that the strain of loosing her would be too much for our relationship, that I would loose him too.  If anything, our relationship is stronger for the stress and pain of the last 6 months.  Over the last 6 years I have watched him grow and change from a bachelor to a husband to a father and everything that entails.  Never have I seen more significant changes than in the last 6 months.  He has shown a strength and a level of devotion that I have never seen before and I am so proud to be his wife. 

I am thankful for my niece, Brittany, who moved in with us shortly after we brought Liam home.  I am thankful that she is who she is and has fit so nicely into our family.  For a teenager, she has shown remarkable empathy.  I had many reservations about having her move in while we were dealing with the pain of loosing Addy.  She has repeatedly shown me that we made the right decision and has truly become a part of this family.  It warms my heart to see the picture of Adeline in her bedroom and hear her talk about her cousin.  Becoming the parent of a teenager has had many challenges but through everything I am thankful to have her here with us. 

I am thankful for my family.  We have always had a wonderful extended family though never have I felt as much love and support as in the last 6 months.  I am thankful for my parents who have gone well out of their way to help ease our burden in any way they could.  From watching Sawyer so that Bill could be at the hospital with me and Liam, cleaning the house and yard and building me a beautiful garden, watching the kids so that we can attend support groups, lending us money while we get our feet back under us after an extended absence from work, and just lending a listening ear when it was needed they have been wonderful and I will never be able to repay them.  My only hope is that someday I will be able to provide the same support to my own children, though hopefully not for the same situation.  I am thankful for all of my aunts, uncles and cousins who made the trip to see Liam in the hospital or called to lend an ear, love and support.

I am thankful for my friends.  I do not have many close friends but I hold dear the ones I do have.  Although I have gone several months without talking to many of my friends, I still treasure their love and support.  I have also made several new friends through support groups.  I have a special bond with these women, one that I wish we did not have but I am thankful none the less, to have them in my life.  These connections have made the last few months seem much less lonely.  They understand my pain in a way that no one else can because they are feeling it too.  While I wish we could have met under different circumstances, I will be forever thankful that they are in my life.  

I am of course also thankful for all of the little stuff.  A house to live in, food on the table, and a job that I love.  After all that we have been through though, these things simple feel like added blessings.  Even without them, we would find a way.  We have each other and amazing family and friends.  As I reflect back on the past year I cannot help but marvel, again, that I am able to be thankful for all of these things.  Beyond that, I am more thankful than ever for the blessings I have in my life.  I think this is because I have seen the worst that the world has too offer and it has made me that much more grateful for the blessings. 

A Day Ruined In a Single Sentence

I am struck but the ability of one moment or experience to shape the mood of an entire day. This has always been the case of course, but since loosing Addy it is that much more apparent. Now I go about my day constantly wondering what it will be today. What completely out of the blue, seemingly innocuous experience is going to come along and knock me on my ass. Usually it is something small, a set of twins, some adorable little girl stuff, that makes my heart catch in my throat and my stomach turn. The effects often continue, dependent on the gravity of the event, for several hours, tinging my day with a shade of sorrow. Occasionally there are those moments that cut deeper, that completely knock the wind out of me and change the tone of the entire day. Today was one of those days.

Today started out well. I was off to work per diem in skilled nursing, something that I really enjoy. I arrived at work, looked at my caseload and decided to start the chart review for the new patient I had been given. I went to the nurses station, pulled out the chart and began reading. That is when the whole tone of my day changed. I read in disbelief "end stage polycystic kidney disease. " My eyes kept reading, trying to move on and ignore those words, but my brain stopped and refused to comprehend anything else. I started thinking "This could have been Adeline. What if she had lived and had a full life before the disease took her from us". Before I knew what hit me I was shaking and close to tears. There was no sense to it. It was pure emotion and anxiety. I did manage to make a smooth exit from the nurses station and make it to the therapy office before i really lost it. It took me 30 minutes or so to get my feet back under me and pull myself together enough to return to work.

For anyone unfamiliar with polycystic kidney disease, there are two basic types, both very different diseases. One, autosomal recessive polycystic kidney disease, is less common and much more severe. This is what Adeline had. The second type, autosomal dominant polycystic kidney disease, is likely what this woman had, though I never did actually get up the courage to go talk to her. This type is much more common and less severe. I know, intellectually that these are two different diseases. Emotionally however, those words cut right through me. I could not see that woman and not picture Adeline. I had never heard of PKD prior to Adeline's diagnosis. In all my years working in healthcare I had never treated a patient with this disease. This woman is the second person I have met with the disease, though the first that I was asked to treat directly.

The rest of my day was marred by this one event. I was physically and emotionally drained before my day even really began. I continued to think of Addy all day long but not in the bittersweet way that she is usually on my mind. Instead this was a terrible aching, a constant reminder that she was gone, that she would never get to have a full life, grow up, have children and maybe even grandchildren before the disease claimed her. Her life had barely even began before she was stolen away by pure genetic luck of the draw. I know that there will be many more moments like these but I am sincerely hoping that the universe takes it easy on me for a while.