Monday, August 30, 2010

It's been a year

Well, I personally still want to be able to see her slideshow when I click on this blog so that's why that is there.  ..........It's been awhile.  I don't even really know what to say though I've practically written a novel of what I was going to post at some point.  Now, today, I'm not ready to share that.

Anywho, I had planned to go to work today and did not schedule the day off but apparently my heart felt different.  It has been a year today since Ireland passed away and as much as I don't want to recognize this day, I can not help it.  I woke up in tears and just want to be alone.  I have no idea what I'll do.   .....on her birthday, August 19th, or I guess what would have been her 1st birthday, Mikey and I took the day off, shopped for a beautiful flowering tree and a small memorial plaque.  It was a hard day but we felt good about how we honored her.  The tree (a double weeping cherry) has been planted and after a shock to the ground, it seems to be taking root.  We have not placed the plaque (and a few stone ladybugs we found) there yet and will eventually take a picture to share.

I have never quite explained how our time went after Ireland died and have mixed feelings on that much sharing.  As I said before, I practically have a novel about this entire year and it felt good to get it down but our experiences of loss are individual and so very different.   .........I know that alot of people have no idea how great a loss this is and others know only too well.  I catch myself still comparing losses or rather comparing a sort of scale of pain and grief.  I wonder if their loss is just as great and do others believe I should be just fine by now.  .......I don't know why I do this because I certainly shouldn't have to validate my pain for or to another, though I do (even if only in my own mind).   .....I can say that today, at this very moment, I feel as if the pain of losing her is just as great as it was a year ago.  If anything, certain facts make the loss greater because I can also feel anger towards so many things, I feel sad for a loss of innocence in my faith of not only God but of others that I felt knew more than me and I placed all my hope and trust in.  I believed without a doubt that she would come home and for that I am beyond grieving.  I feel that I lost an incredible trust in hope.  ......I did not cry every day that Ireland was alive because I could not see past the joy of her being here and truly, I can't remember thinking for a minute that she wouldn't come home.  ........It's weird, the night before the fateful morning that we had to make the worst decision ever is the only time I remember Mikey and I having a conversation about us loving her so much that we would not sit back and watch her suffer if the time came when we'd have to make the decision of live so we can have her or die so you hurt no more. ........I think the conversation lasted only long enough to express our deepest love for her and wanting to give her the best life we could.  We both have the same feelings towards our own lives. ........I remember sleeping well that night because we had left the hospital knowing that she was looking so good and her little body was doing all the things the doctors had said she needed to do.  I actually woke up around 1am to call her on call nurses (a nightly habit I had developed)  to see how she was doing and was told she was sleeping and doing great.  I went back to sleep after conveying the continuing good news to Mikey.  I believe just  about three or four hours passed when the phone rang.  Mikey answered it and we hurriedly dressed for the hospital.  He had the conversation over the phone about Ireland's lungs bleeding and us having to make a decision.  ...........the entire morning is a blur of speedy paperwork, me literally screaming and crying......calm moments of finally being able to hold Ireland....and doctors and nurses coming in and out of the room.  ........I have sporatic memories.  I recall signing forms.  I remember us coming into Ireland's room and doctors and nurses being lined up around the room as they had us go to Ireland's bed...I remember screaming at those doctors and nurses because I thought Ireland was breathing and they were doing nothing....Mikey showed me the nurse that was holding something that made her little chest go up and down, I guess so she'd definitely be alive as we said good bye...I am sorry for that nurse because I wouldn't have wanted to be her at that moment.  ...........I don't know why I'm saying/writing all of this because honestly I can hardly read the screen as I type this...maybe it's just I sort of stopped seeing my therapist a long while ago and I always feel better after writing.   ..........anywho, I finally got to hold Ireland.  We were in a private room and a nurse brought her to us.  She was so incredibly beautiful and entirely peaceful.  She was also still alive.  I know this because maybe 5 minutes or maybe 10 minutes later a nurse came in checking her heartbeat and she had to do this again a little later.  ........This was an ugly little crowded with furniture room made for the sole purpose of NICU parents either needing to sleep or have some time to themselves.  ......We had called friends earlier to have them bring Tristan to the hospital.  The nurse had told us that it was important for him to see her to say goodbye. .......I can't tell you how long Mikey and I were in that room holding Ireland.  I know that Tristan had a tough time and was ready to leave so stayed in the waiting room until Mikey and I could finally walk away.  Our best friends, Terry and Jeannie, got to see Ireland.  I wish my family could have seen her.  She was so beautiful. ............anyway, beyond my anger of having to make a DNR (do not resuscitate) decision half way through an already horrible morning where horrible decisions had already been made (apparently someone forgot to have us sign the DNR at the time of signing all the other papers)....and I mention this only because really, how horrible that I look back on these times and still can not believe that in the midst of our grief and time waiting to have our daughter brought to us we were asked to give a witnessed DNR out loud to the doctors.........argh!, it still makes me we had to make the worst decision twice!.............anyway, once the drama was gone and it was just us and Ireland......well, it was sad and horrible and incredibly beautiful.......we knew she was there with us and we'd like to believe she knew we were finally able to hold her...scratch that, she knew we were there.  .......I've always been scared of death....religion and heaven aside, I like life and don't want to leave it behind.  ........I don't like that Ireland is not here with me .......I just know that morning became peaceful as we were holding her.  ......the tears never really stopped, we whispered we loved her over and over again.......we felt her skin, touched her and held her and kissed her....told her she was so beautiful and strong.......and she just looked peaceful.  .......there were finally no tubes tying her down and her mama and daddy could hold her
..........I've had people ask me what to say to others in a similars situation.  Honestly, I haven't a clue.  You be there for them and love them and listen.  A minimum of words on your part is probably best...just be there in your best capacity whether it is at a distance with cards or flowers or well wishes or you are there and hug them, hold their hand, make them something to eat or just let them know you are there.  I know that I just wanted to be left alone but I am also aware that I had a gazillion people there for me and available if I wanted to talk or needed someone.  I remember that we didn't have to worry about how to pay for nourishment because people either brought us food or had given us money to go ahead and call for pizza.  All of our basic needs were somehow provided for and one friend even brought us a case of water.  Who knew?  That was smart and something I'll try to remember.   ..........we had Ireland cremated because we didn't want to have her here in Utah when we weren't certain if our life would have us here forever.  We had a small ceremony or memorial for her at the local mortuary and am still amazed at the outpouring of those that came to see us and honor her little life....We also had a ceremony back home for her.  Our family flew us out to PA because we so desperately really needed our families.........All of this was beautiful and amazing.  We had an incredible amount of flowers to where we actually sent some to the hospital and the rest to a local nursing home.  The flowers at the service back home were left for the church. .....The church service was beautiful and what I remember most was Mikey speaking publicly about his love for his angel, his baby.  It was beautiful and I will never forget it.  He was the perfect father in that very moment and I know Ireland was proud.  .........A few weeks later, my parents and favorite aunt came out to stay at Park City.  They had originally booked this place to visit Ireland (because we knew she'd have a long stay in the hospital) and well, I'm just so glad they came.  It was a great time of rest and insight.  I got to speak freely about so many things that I didn't really feel comfortable talking about with others and I didn't feel that I had to hold back in fear of making someone uncomfortable when I wanted to talk about Ireland.  I also listened to their feelings and insights on anything and everything.  It is a week in my life that I'll cherish always. this point, "things" were supposed to start getting back to "normal".  ..........Mikey went back to work and Tristan to school. life felt stalled because I was supposed to be the one that nursed Ireland back to health and bring her home and just be her mom......the plan was for me to not work until Ireland was on a path that she'd be able to .............well, I don't know.......I suppose that I would have just stayed home until she was ready for school and possibly longer if that is the care she would have needed. this point, I guess I'll note that my doctor at the University of Utah had prescribed some zoloft for me about a few days after Ireland had passed away.  I took these for maybe a week because I thought it was perfectly normal for me to be depressed and seriously, I didn't need anything else putting me in some zombie state.  So, I self UN-medicated.  To date, I don't know if this was good or bad but it's what I did. ............anywho, life was supposed to go back to normal.  I think its safe to say that all of us were in a pretty sad and depressed state for a month or two.  Tristan seemed to handle this all very well.  Mikey was the rock that just took care of EVERYTHING.  I think Mikey just worked so he didn't have to think of things and he felt his job was to take care of me.  ......ME?  I was a nut that didn't know where I belonged or what to do anymore.  I was supposed to be taking care of Ireland.  I was happily not working my crazy inspecting job and being yelled at or expected to make major decisions.  I didn't want to go back to that job either.........what I wanted was for Ireland to be home and well, that obviously wasn't going to happen and I sure as hell didn't know how to handle that.  Lo and behold, I found out I was pregnant.  I want to say it was just a little before Thanksgiving and we had a shock of a lifetime because after waiting so long to have Ireland and then just to be pregnant was a shock.  There was no intervention of doctors and pills, I was simply pregnant.  Well, we figured it was divine intervention and that I'd just take care of myself and try to make a new normal.  ..........Now, I was not thrilled and excited with this pregnancy though I wasn't disappointed either.  I truly didn't know how to feel because I was still depressed about Ireland not being in my life. ........about the time that I was starting to feel some excitement about starting another chapter in our lives with another baby, I had the miscarriage.  Now, I don't recall being overly depressed about the miscarriage as much as it sort of brought about my feelings of loss with Ireland to an extreme all over again.  .........not too long after this, sometime in February, I finally made an appointment with a shrink (my counselor, Barb).  I should have done this a long time earlier but I really thought I could handle myself.  Now, I think I only saw Barb a total of six times and probably should have seen her more but she changed my outlook.  I am still having hard times and am not what I'd call 100% but I also don't cry daily or see my life as completely bleak.  ..........we figured that I had a case of PTSD (post traumatic stress disorder) because instead of getting better, I was getting worse and let's face it, there was a lot of traumatic things I was seeing on pretty much a daily basis and yet I was trying to ignore the facts or trauma for the hope I had of her just coming home.........anywho, this has all led me to a life where I worry too much and fear too much.  .......go figure, I stopped seeing Barb about the time she said that we really needed to tackle this little subject of worry and fear.  .......sometimes, I think I should call her because I do know that it is a problem but at the same time, I do not believe it's as debilitating as my depression was. ............just to give you an idea of what I mean about worry and fear....well, I am 17 weeks pregnant today (yay!) and I just want to get to the 20th week ultrasound because I want to see that this baby is okay....I want to know that everything is where it should be and that I can start to truly get excited about this pregnancy.  .......I get scared when Mikey and Tristan go 4wheeling because I see things (horrible things) and want to know that they'll come home safe.  ........I have too many scenarios that I could give as an example on fear and worry so just trust me here.  I truly think that this is somewhat ok though.  Seriously, my thoughts are that losing Ireland would of course change me and I happened to have believed so much that she'd be here with me today that I lost sight of things that could go wrong...things that did go wrong...........and today, I just know only too well that things go wrong everyday and that we truly do not have the power to lead every single detail of our life...I'm not saying this is an excuse to stop trying to make things happen, it's just I know how unpredictable life can be on the most serious levels.  I stand by an earlier conviction I noted on this blog where my tolerance of bull sh*@ is at an all time low.  Seriously, people "creating" problems or stupid scenarios for attention...well, how pathetic.     ..................anywho, I do happen to feel better a bit now that I've been writing on here.  There are some random facts I'm going to throw out just for the curious.
.......First and foremost, I miss Ireland.  I miss having her for my daughter and I miss the life that I wish we could have all had together.  I miss her cute face and I wish I could hold her again.  I hate having missed out on seeing the father that Mikey would have been to her and the brother Tristan would have been.  I miss the dream of staying home and happily taking care of her needs.  I would love to have known the woman she'd have become.......I just wish she could have stayed in my life and the she could have witnessed my life and death, not the other way around. ......She just can never be replaced and I will always have a void though I am working on building that beautiful garden of memories there.
......Second, I still think of all the mothers that I met through this blog that are either raising their CDH babies or still dealing with the loss of their own.  I bonded a bit closer to a few that traveled the same path I've been on and they'll forever have a place in my heart.  I've also met several families and friends that accounted their personal stories of loss, and they all helped.
......Third, I would suggest that if you know someone that's going through a rough medical time or facing death of a loved one or even themselves...just be there for them, advice is over-rated.  And absolutely do not say that medicine and science have come a long way.  Yes, it's a fact that it has but in the end, we all die regardless of the incredible advancements in this world. ..........when they're ready to talk and listen, you will know because they will start a conversation...otherwise, lean on the side of just being there.
......Four, absolutely be there in some capacity.  I wanted to be left alone but I also liked that I lived in an age where I could text my brother or get on facebook and receive messages that people cared.  I loved each and every card I was given.  .......I did not always respond and didn't honestly have it in me to even say thank  you but I knew everyone was there and it helped me.
........Five, know that we all respond to loss differently. I didn't want to be around young children and babies for a looooooooong time.  I'm honestly just getting comfortable with this.  Little girls were especially tough.  Don't take these things personally.  It may sound selfish to you but think about if you were in my shoes, maybe you'll understand better.  If anything, know that the sound of your little one's laughter is beautiful and for a long time was just a reminder of the voice I never got to hear.
........well, that is all I've really got.  I guess I should also say that I also feel that other people have losses that aren't as easily recognized as death and I feel their pain is just as validated as mine has been and still is.  This world is not easy and I think Ireland taught me to really recognize how valuable life is.  I will never be ashamed that I was full of hope and joy for her life while she was here.  I'm glad that I enjoyed her while I could.  I wish that I wasn't so affected by having lost her but this is how it is and I think that I really am going to be ok.  We are pregnant again and we are ready to have another baby.  I worry, it's who I am.  I am working and don't see that changing in the near future.  Things will be different as of course they should be.  Tristan is going to a nice charter school and is looking forward to getting his driver's learning permit this winter.  Mikey is working and excited about this next baby.  ....I am steadily growing HUGE and doing my best to be better than the standard of "just getting by".  It's been a tough year, I wouldn't wish this on anyone, and I am grateful for the life and experiences I've had thus far.  I'm grateful for those I've been blessed to have and love in my life.  I will be ok, we all will be, .....We all just miss her.

Monday, January 11, 2010

Ireland's slideshow

After finally figuring out how to do slideshows, I finally have posted a little over 100 pics.  The pictures are awesome and beyond loved by us but they far from do her beauty justice.
When viewing these please remember that in 11 days, Ireland changed quite a bit.  At birth, she immediately had to be intubated because of the CDH (congenital diaphragmatic hernia).  Not too soon after that she had to placed on ECMO and that causes quite a bit of swelling...we chose to exclude the first day or two of her on this but you can definitely see her weight changing day by day.  As she neared having the surgery to correct the hole in her diaphragm, she thinned out quite a bit which was great.  And then, once surgery was completed, she began putting "liquid" weight on again, which was expected.  I've come to like that she changed back and forth because well, it's who she was and it was the changes she had over her little lifetime.  I thought she was beautiful each and every day.  I certainly don't fear death so much when I know I'll be with her again!
I'd like to add that the pics that are black and white and the lighter toned still pictures are from the organization .."now I lay me down to rest".  If you are ever, God forbid, in this situation...choose to have them take the pictures.  We almost didn't do it and now, I am glad that we did.  .....Also, quite a bit of the pictures are taking with our phones so the quality isn't there but once again, we cherish each picture.