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.

A Year Of Firsts That Will Never Happen

As I watched the snow fall I was struck by the thought that this should have been Adeline's first snow.  Instead, as with many things now, it is our first without her.  She will never see the snow.  She will never press her little face against the window to watch it fall, or run down the stairs in excitment after an overnight snow.  I will never bundle her up in all of the adorable pink and purple winter clothes that are currently sitting in boxes in my basement.  This year has been, and will continue to be, filled with so many of these firsts.  She has missed her first bath, first smile, first solid food, first trip to the lake, first fireworks, first trip to camp, first Halloween, first day of daycare, and so many more. This is the year of firsts that will never happen.   As I watch Liam's hair get more blonde by the day I realize that we will never know what color hers would have been. We will never know who she would have turned out to be.  She will forever be one day old. 

Each time one of these "firsts" happens I think of Adeline and miss her.  No matter how small the mile stone, first trip to the grocery store, first time playing with a toy, I feel her absence for them all.  Everytime Liam plays in his play gym I can't help picturing her there with him.  I am acutely aware that during all of his firsts, all of his milestones, she is missing.  Everytime I take the boys somewhere, I am struck by the fact that taking all of my kids out of the house was suposed to be much more difficult.  I was suposed to be up at night with two babies and I long for that everytime I wake with Liam in the night. Stress, sleep deprivation and all, I want it more than I can ever express.  I have been asked several times, when the boys were making me crazy,  "can you imagine doing this with two babies?".  The answer is a resounding yes.  Yes, I most certainly can imagine it, it is all I think about and all I want in this world.

As we go through our lives without her I know that there will be many, many more missed milestones.  She will never have a first Thanksgiving or a first Christmas.  She will never taste pumpkin pie, say her first word, go to preschool or have a first day of school.  Our family pictures, vacations and outings will forever be short one.  We will remember her always but especially at these times, I know she will be with us.  We will mark all of these missed milestones and remember her over a lifetime of firsts that will never happen. 

Capture Your Grief 2012

Day 1. Sunrise

 

Day 2. Before Loss Self Portrait – Here I am super pregnant and very excited about the babies.  I believe this was taken at about 6 months.

Day 3. After Loss Self Portrait – This was taken the night Adeline died.  After everything settled down I was able to hold Liam for the first time since he was born.  It was very therapeutic for both of us.  

Day 4. Most Treasured Item – This is the memory box that the NICU nurse put together for us.  Inside are Adeline’s footprints, handprints, a lock of her hair, the clothes and blanket we dressed her in after she died and notes from the NICU nurses and doctors.  I also added her coming home outfit and the shell that she was baptized with.  I often visit this when I need to feel close to her. 

Day 5. Memorial – I was feeling like we needed to have Adeline’s picture up in the house so Sawyer and I we and had some printed up.  I found the picture in the middle on a twin loss website just after she dies and it really spoke to me so I traced and modified it and added their names and birth date.  It is hung in our living room where we can see her all the time.

Day 6. What Not To Say

 

Day 7. What To Say

 

Day 8. Jewlery – This is Adeline’s necklace.  It has her name engraved on the back and her ashes inside so I can carry her with me wherever I go.

Day 9. Special Place -  My favorite place in the whole world is it Beal family camp on Cathance Lake in Washington County. I have always felt at home there and find myself relaxing as soon as we pull in the driveway. I was very much looking forward to bringing the twins for their first stay at camp this summer but was only able to bring Liam. Addy was there with us though I think and I hope that she loves it as much as I do.

Day 10. Symbol - An angel because I believe that Addy is here with us watching over Liam and Sawyer and will be their guardian angel always ♥

Day 11. Supportive Friends/Family - A huge thanks to my wonderful husband, beautiful kids and niece as well as my very supportive family, the wonderful NICU nurses and new and old friends, for helping me through the last 5 months. There are so many I cannot name you all but I couldn't have made it this far without you all, and there is still a long way to go.

Day 12. Scents – ok this might be a weird one, but hospital soap.  I love that smell, it makes me think about the wonderful NICU, Addy’s home for her one day here on earth.  I have so many, life changing, memories in that place. Every time I smell that soap it takes me right back to the first time I walked into the NICU to see my babies. 

Day 13. Signs - One of the signs that helped me the most happened one day a couple of weeks ago. It was rainy and I was having a particularly sad moment thinking of Liam and Addy talking and playing together. In that moment the sun came out for the only time all day and came streaming in this window right next to me. It was really as if she were there saying "don't be sad mommy, here I am."

Day 14. Community –Our first "Baby loss community" event was 10/13/12  when we did Noah's walk. It was a wonderfully sad experience to be in a room with so many other people who were there to remember the babies they never got to bring home.

Day 15. WAVE of LIGHT Day - As today is international pregnancy and infant loss awareness day we lit our candle in honor of Addy and all of the babies who left too soon ♥

Day 16. Release – We did not to a release since the idea of balloons, lanterns, etc. ending up in the environment really bugs me.  Instead I chose to use a picture of the day that we “released” Adeline to be an angel.  This is just shortly after she was extubated. 

Day 17. Anniversary/Birthday/Due Dates- I already know that Addy's birthday will be a difficult day. Not just because it is her birthday, followed so closely by the anniversary of the day she died, but because it is also Liam's birthday, a day of happiness and celebration. I hope to celebrate her birthday along with his and use this as a time to remember and celebrate her far too short life.

Day 18. Your Family Portrait - Our beautiful family with Addy's remembrance candle.

Day 19. Project – I do not have a good picture for this one as, I have a lot of great ideas, but have been a bit short on time and energy.  I am planning to build a shelf and urn for Adeline’s ashes and I would also like to crochet some baby blankets for Ronald McDonald House to replace the ones that we were given.  

Day 20. Charity/Organization – The charity that had the biggest impact on us through the loss of Adeline and our stay at the hospital with Liam was the Ronald McDonald House.  They were amazing, providing us with a place to live, eat, do laundry and just get away from the hospital.  They gave us blankets for Liam and Sawyer, provided toiletries when we ran out, wonderful dinners every night, snacks to take back to the hospital as well as the chance to meet many wonderful families.  This place will forever hold a place in my heart and someday, when life calms down a bit, I plan to take the kids back there and be a guest chef.

Day 21. Altar/Shrine/Sacred Space – We plan to build a shelf in the living room and a permanent urn for Adeline’s ashes.  Until life settles down enough to do that her ashes and the angels from her baptism are in our room looking over Liam’s bed.

Day 22. Place of Care/Birth – We own so much to the staff at the MMC NICU.  They provided Adeline and Liam with the very best care possible.  Aside from the medical care, they also provided our family with more love and support than I possibly could have imagined.  When it became clear that it was time to let Adeline go, they left all of the decisions to us.  We were never rushed, never pushed and were provided with amazing support during the most difficult day of our life.  It is terrible that these wonderful nurses and doctors have to have this skill set but I will be forever grateful that they do!

Day 23. Their Name/Their Photo

 

Day 24. Siblings – 

Day 25. Baby Shower/Blessing – My baby shower was extra special as I got to share it with my sister, Amy.  It was also the last time that I saw my Uncle Kenny, who passed away, suddenly, just 9 days before Adeline.  I know that he is taking great care of her in heaven, though I wish that they could both be with us still <3.  

Day 26. Their Age – One day in our arms but a lifetime in our hearts <3

Day 27. Artwork – Looking ahead to this day’s subject inspired me to actually buckle down and create some artwork that I had been envisioning for a while.  

Day 28. Memory

 

Day 29. Music – I don’t have a good one for this day.  Try as I might I cannot think of a specific song that reminds me of Adeline.  Everything reminds me of Adeline.  I will forever miss being able to sing her lullabies, teach her nursery rhymes and listen to her beautiful  voice.  

Day 30. Your Grief – Tell The World 

Day 31. Sunset- Goodnight sweet girl

Do Not Judge

                                                                        “Do not judge the bereaved mother.
                                                                                She comes in many forms.
                                                                          She is breathing, but she is dying.
                                                     She may look young, but inside she has become ancient.
                                                                           She smiles, but her heart sobs.

                                                 She walks, she talks, she cooks, she cleans, she works, she IS,
                                                                              but she IS NOT, all at once.
                                                        She is here, but part of her is elsewhere for eternity.”

 

This was posted, but uncredited, on a child loss board that I frequent.  I was very touched by the wording as it seems to get at the essence of loosing a child perfectly.  As I go about my day, take care of the kids, go to work, move forward with my life, there will forever be a part of me that is stuck in that moment on May 17th when we said goodbye to our beautiful Adeline.  At that moment, I feel as though a piece of my soul broke off and went with her, while the rest of me had to stay here.  When I think about the moment we let her go, I am there, like it was just yesterday.  All of the emotion, the pain, the hope for a miracle, is just as real as it was that day, almost 6 months ago.  No matter what I am doing, where I am, who I am with, there is always a part of me that is with her.  

 

I often try to view myself through the eyes of someone else.  Not that I particularly care how everyone else views my grieving process, it is what it is regardless of what others think, but I do think about it.  There are times when I know, that a person who has never experienced the loss of a child, would think that I have healed, moved on, forgotten, or whatever cliche sentiment fits best.  Anyone who has experienced the loss of a child knows that this is as far from the truth as you could possibly get.  There has been no lessening of the pain, just an increase in my ability to deal with it.  I was talking with a friend the other day who also, recently lost a child.  She mentioned that she did not like to say that she was having a good day, for fear that people would think that she had moved on, that she was done grieving.  I was struck by how much this made sense to me.  To think that someone else feels that I have moved on, makes me feel that they think it is ok to move on too, to forget her.  I will never "move on", never forget, never heal from the loss of Adeline.  A piece of me will forever be with her, in much the same way that a piece of me will always be with Sawyer and Liam.  My love for her, need to have her near me, to love her, to protect her,  is no less than it is for my other children.  

 

I read somewhere, "The pain does not get better, we just get stronger."  This is true, at least for my grieving process so far.  My pain in no less today than it was the moment I realized Adeline was dying, the moment we removed her from life support, or the moment her heart stopped beating.  I have had time to process the pain, process the loss, the stress level has changed and we have moved forward with our "new normal", but the pain is still the same.  When I go back to that moment in my mind, it is like watching the end of a sad movie, when you desperately hope for a happy ending but know that it wont happen.  The hope that I had that day is still there, the prayer for a miracle, for the diagnosis to be a mistake.  The emotions are the same, but with the knowledge that it is an impossible hope, an unanswered prayer, a happy ending that will never come. 

I have met many mothers who also lost children, some recently, some many years ago, but the look in their eyes is always the same.  I am always struck by that look, that far away longing, the sadness that takes the light from their eyes, when they tell me about their child.  I know that look, I know where they are, they are not here with me, they are with their angel.  I can often pick out women who have lost a child.  I am fairly open about the loss of Addy, and there have been many times when mentioning her in passing to another woman, that I have seen that look.  It is the look of someone who knows the pain and  heartache of missing a part of your self, missing a future that never happened, the pain of loosing a child. 

Paradise Lost

I was back at Maine Medical Center the other day for Liam's kidney ultrasound.  This was not the first time I had been back but it was the first time when we were all healthy and I actually had time to focus on how I felt about being back there.  After being there for about 5 minutes, smelling the smells and hearing the sounds of the hospital a knot set up permanent residence in my stomach.  This nauseating heartache stayed for the rest of our visit and made me think about the impact that this place has had on my life.  As I walked through the hospital I was as usual greeted with a perfect view of Addy's NICU window, passed the entrance to the East Tower, where the NICU is, the courtyard where we sat and ate breakfast the morning after Adeline died and got my jello and chocolate milk fix in the cafeteria where we spent so much time during our hospital stay.  Each step through the hospital twisted the knot in my stomach a little bit more.  It may sound crazy to someone who has not experienced the NICU but I truly miss this place.  I often joke that I am homesick for the NICU and this really is the best way I can describe it.

When Liam and Addy were in the NICU the doctors, nurses, respiratory therapists and all of the other staff we met, were wonderful.  I can never express how thankful we are to all of them.  From the time the babies were admitted, the doctors and nurses too care of all of us.  We were included in their care, allowed and even encouraged, to talk to the babies, touch them and love them.  When we were given the news of Adeline's diagnosis and prognosis the doctors came back to help us make sense of what was happening and spent alot of time talking to us, explaining the diagnosis, explaining her chances of survival, discussing our options and just listening to us talk, cry and ask hundreds of questions.  We were never pushed to make a decision about Adeline, nor were we rushed once the decision was made.  The doctors and nurses went out of their way to ensure that we were taken care of, that Adeline was taken care of.  I will never forget how Addy's nurse stayed well beyond the end of her shift just so that she would be the one to take Addy down to the morgue.  I will never forget how she loved Addy with us, grieved with us. How she sat down and gave me a hug when I started crying about 5 minute after I met her and told her that I had know that Adeline was a girl from the minute my pregnancy test came back positive. That night Liam's nurse let me hold him for the first time, brought me dinner and helped me put my horrendously swollen feet up.  When I was finally ready to stumble, bleary eyed, back to the parent room off of the unit I looked around and realized how trashed the room was from the day of visitors and overflow from Adeline's room.  Liam's nurse just smiled, helped me get the bags down to the parent room and told me not to worry about a thing

After Adeline died, the NICU remained my sanctuary.  In the days and weeks following Addy's death the nurses and doctors continued to take wonderful care of all of us. One of the neonatologists spent almost an hour, on several occasions, looking at x-rays with me, comparing Liam and Addy's x-rays and explaining everything in great detail.  He assured me that even if I had carried to term, Addy likely would not have survived.  This helped greatly to relieve my guilt over wishing for the pregnancy to be over.   He also explained in great detail how different Liam and Adeline's diagnoses were and how different the outcome would be.  This was more helpful that he will probably ever know and I will be forever grateful that he took the time. I think the best part about the NICU was that there were no suprises and alot of support.  Everyone knew that Adeline had died, everyone asked how we were doing, made sure that we were taking care of ourselves as well as Liam.   There were so many reminders of Adeline on the unit but I knew where they all were.  I could sit and look into her room and think about her on my terms, not be blindsided by something that reminded me of her.  The doctors and nurses all asked if I wanted to change rooms several times.  Liam and Adeline had been in adjoining, twin rooms and Liam remained in the room next to hers.  I declined everytime and I feel like they went out of their way to respect my wish to stay where she had been.

This most recent trip back to the hospital was the first time that we have all been healthy and I had a little time to kill so I decided to visit the NICU.  I thought this was a weird thing but I was assured by one of our nurses that it is not and people do it all the time.  I pretty much wanted to see our nurses and doctors and most of all I wanted to see Addy's room again.   Unfortunately, they were busy on the unit and we were not able to go up.  As I stood at the guard station at the East tower, where I used to just wave and walk right by, I couldn't help feeling almost exiled.  Kicked out of this place that was so wonderful, where so many of my best and worst memories are.  I will definitely try to visit again if I ever find myself in Portland with a healthy baby and extra time but I don't think the NICU is really what I am missing.  It is that protected, cared for feeling.  The bubble that that the NICU provided for us when we were there.  I will never be able to go back there.

The Light

I was talking to a friend the other day, who lost her son just after we lost Addy.  We were talking about the grieving process and she asked "Do you think the light will ever return to our eyes?". I have been thinking about this ever since.  I know what she meant, the light is gone, I can feel it.   They say the eyes are the window to the soul and a big piece of my soul is missing.  I feel it as that tug in the pit of my stomach every time I am happy.  That "Wait a minute, something is missing." feeling when I find myself smiling about something cute the boys are doing, or laughing with friends.  The reminder is always there. 

I really didn't know how to answer this question though.  I don't know that the light will every fully return, anymore than the pain will ever fully disappear.  As hard as it is to constantly think about Adeline, to constantly miss her, I think it would be worse to loose these constant reminders.  It makes me feel like she is still here. she is part of this family and I love that I think of her at important family moments.  I love that I think of her every time the sun shines in the window or I look up at a blue sky.  She has forever left her mark on me, changed my view of the world, and that is as wonderful as it is difficult. 

I think that the light that used to shine in my eyes is in fact gone for good.  I don't mean this to be a bad thing though, quite the opposite.  I no longer see the world the way I once did.  Looking back over pictures I can see a difference in my eyes from before Adeline died to after.  However, I can also see a difference from before and after Sawyer was born.  There are a few events in life that shape us into a completely new person, these were two of mine, becoming a mother and loosing a child.  For better or for worse I will forever be this new person, I will forever see the world differently. 

I think that a new light will come.  It will never be the same as before, I will never go back to being the person I was before Adeline died, but I think it will come.  I am not there yet, not even close, the pain is too fresh and raw.  I think though,or at least I hope, that given time and alot of healing the light will come back.

And so, dear friend, this is my answer to your question. Yes, I think the light will come back.  I don't know how long it will take, maybe months or years, but I think it will come back.  I think they will become the light in our eyes.  Someday, when the pain isn't so raw, when we are able to think of them and truly smile at their memory, the light will come back.