I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord
Psalm 27: 13-14

Tuesday, March 30, 2010

Reflecting on my sweet Evan

Just yesterday, my monkey man trying to "chew" the window handle!
Days after my little Evan was born. A gavage feeding while learning to suck during his feeding. You can not imagine how tiny this preemie soother is!!!! I still have it!
My little mans teenie pencil legs :) So frail. So little. No fat to be seen.
This was before the 4th day of Evan's arrival because he is still on his ventilator here and he came off it on day 4 of his arrival. But those who know me know I have small hands...and if MY hand covers more than half of Evan's body...you get a slight glimpse at how small he was!
Usually I post about the struggling with my grief...my sorrow mix so "perfectly" with my joy.
But today I want to share about my sweet Evan. The gift we were "allowed" to keep.
On the desk top of my lap top I have a small screen that randomly shuffles through all my photos and does a slide show. It's quite fun as I will occassionally glance and think "wow, I haven't seen that picture in a long time!" Some pictures bring a huge smile to my face from days before our blessings arrived, some pictures warm my heart by the love of family, some pictures bring a tear...for moments lost. And some pictures just blow my mind...the pictures of this tiny 28wk 1day gestational baby who weighed a mere 2lb 9ou...just two blocks of butter...this little miracle who I got to keep. These pictures sometimes run chills through my body as I look at my son, the boy who was meant to continue to grow within me along side his brother for many more weeks, this little baby was in our world and showing me the meaning of determination.
I look at those pictures and am catapolted back to NICU days...the early days of looking at this fragile little baby...still not yet fully developed...chest caved in, no fat to be seen (definitely not a chubby baby at all!), skin hanging from his body, his head still yet to round out, his face to finely defined. Yet he was the meaning of strength and will.
I would watch as he would stretch and wriggle about and kick and reach and try to pull the gavage tube from his nose or mouth, and watch as he would wrap his itty bitty fingers around his monitor wires and would just hold on to them.
And the most bizarre thing...as I watched him...it was as if I could still feel those movements inside of me. Like they were happening inside me! I still felt so physically connected. I felt lost not watching my belly move as the boys rolled around and played. I don't know the right word to explain how I felt...but "numb" is the closest word. I was meant to still feel my boys inside me. My body was not prepared to be without them yet. And watching Evan just enforced that physical attachment and feeling of loss...even though I was seeing who I had gained.
My body didn't have time to prepare for the departure of my boys. It didn't get to go through the usual routine. And it is crazy how your body realizes this!! In a physical way, not just mental and emotional.
But I watched Evan every minute of every day. I became a permanent fixture. I would sit beside his isolette and just stare at him, and the monitors...which of course the nurses always tried to encourage you NOT to watch the monitors. But...as a parent...it's hard not too. By the end I got better at it. I started to learn what they meant by "watch your baby, and learn his signs...don't rely on a machine, because when you go home with him, you will need to know his signs." Ahhh, I loved our nurses. We were so fortunate to have such wonderful women along side us. A few hold such an amazingly special place in my heart. I will never forget them! Never forget the ones who sat diligently by Zac's side through his struggles and through his days, and Karen, the amazing nurse who walked us through saying goodbye to Zac. The nurses who loved my boys, and the nurses who always commented on Evan's perfectly puckered lips like he was forever waiting for a kiss!
My focus was totally on Evan. I didn't care that I still hurt from my surgery, didn't care how tired I was. I had to remember to take moments to nourish myself in order to nourish Evan (with the encouragement of my mom and the nurses). I literally lived morning to night at the hospital even after I was discharged.
I felt beyond lost walking in to my home without our sons. I felt like my heart was ripped out each time I had to do that. I couldn't relax. I felt anxious until I was with Evan again.
Every day brought new worries, or maybe it was just that they were forever carried over from the previous day. We knew that anything could happen...good, or bad. We knew that Evan was very early and very tiny. We knew that set backs were inevitable. We knew everything because we were reminded of that every day. Not just by the loving "grounding" from staff, but also by looking around the unit. You can not imagine life in the NICU if you have never had to step foot in there. And trust me...you are so very lucky. So lucky. Even if you had to spend a day in there...it would only be a moments glimpse of the reality that not everyones story ends happy. We all hear the happy stories...because really...who wants to hear the sad ones? We live in this cloud of bliss when things are good...and how fortunate those of you are. I am truly relieved and happy for you that you have never had to face the other side.
I can't say I don't hold envy. I can't say that I don't feel a tad bit jealous. I can't say that I don't struggle every day asking "why?!" And I can't say that every day I have to get my attitude in check. I know it's not right to envy and feel jealous. I know it's okay to ask why, as long as it doesn't consume you. But right now...the reality is...life isn't always perfect. Well, is it every truly perfect in the purest form of the word? How can it be when we live in a fallen world?
However, life can be filled with perfect moments. I have had moments that felt so perfect. I have had glimpses of blessings. I look at Evan and I feel perfect and blessed. But I have also asked the question "why does someone else get to be "more" blessed than me? What makes them better than me?" Yup...that's in my bitter moments. And I'm working on that attitude. Because it's not right. I have to learn to focus on ME, and not make others perfect endings reason for me to feel broken over my circumstance again and again.
It's almost like I want to just enclose myself in this bubble and block out any triggers that will bring up hurts...but that is so wrong. Because in doing that I am missing out on so much.
I want to feel pure joy for others and their happiness. I do feel joy...but I'm lacking on the "pure" part. But I'm trying!
We felt so fortunate that each day that Evan was in the NICU he always had such good days. Even with all the bradys and apneas...we knew those were just part of how premature he was and that eventually he would outgrow them. I even thought it was funny how they treated these with caffeine for Evan! When I learned that I almost felt jealous because my son was getting caffeine, and I had completely cut it out even before my IVF retrieval and still hadn't touched it! But a while after they began the caffeine treatments I finally decided...it was my turn! I needed some caffeine treatments myself! I allowed myself a small half caf, half decaf a day. I remember that first sip...ahhhhhhh, it was "perfect"!
But I will NEVER forget the fear of the first setback he encountered. I will never forget the solemn look on the nurses face as she came out to get me and explain what was happening. I will never forget how broken and terrified I felt wondering if this was the beginning of the end of my time with my son. I remember finally getting to go sit by his side, and my normally active son was lethargic. He was back on IVs for his feedings and for antibiotics. He gavage feedings stopped. And I felt...angry. I felt angry at God all over again. I felt like screaming "Was it not enough for us to lose Jack and Ethan?? Was it not enough to taste the joy of Zac and Evan only to have to hold my Zac as You took him back?? WHAT MORE DO YOU WANT FROM ME??? How much more can you break me??? I'm done! I have nothing left in me. I am more broken than I can imagine! YOU WIN!!" Truly...that is what I felt in that moment. Even though knowing logically that set backs do happen, and knowing that we would have been a rarity if Evan had breezed through his weeks in NICU with not one set back. But logic doesn't help when your emotions are called in to play.
But we continued to hold Evan in prayer...as did so many of you. And what would we have done without the prayers of so many loving people?! People we don't even know! Those prayers carried our son through many days where we had nothing left to say to God and could barely whisper "protect our child...please!"
I remember the first time I got to change Evan's diaper. MY WORD...you have never seen such a tiny diaper!! How do those even exist!!
I nannied, I babysat for YEARS and changed a zillion diapers...but for the first time ever...I was afraid. I was afraid because holding my sons tiny legs were like holding two tiny pencils. It was nothing I had ever experienced before. And it scared me. I was thrilled to finally get to feel like his mommy...but I was terrified. I was terrified because I felt like I had failed him while he and Zac were inside, and I was terrified that I would hurt him or fail him now.
There were lots of moments where I relied heavily on Brett to do certain things because of my fear and because of the emotions and scars that I was carrying. Brett would just look so confident and so amazing. If anything...it was just so precious to watch him caring for his son.
I wish I could adequately describe or show how tiny Evan was. Even in pictures, they are brutally deceiving. Except seeing Evan and Zac made me think "how on earth were those boys inside ME!" It's crazy!
Evan could fit in one of Brett's hands. I had to cup my hands with them overlapping when I would get to hold Evan. It was insane!
I've wanted so badly to upload the video of the first time I got to hold Evan...the fourth day of his life. I've tried before but it doesn't seem to want to work. But I'll have to figure it out...because I love that video.
All this to say, I've just really been overwhelmed with the memories of each of Evan's days in NICU, and now watching him today...it blows my mind. I feel very fortunate. I feel honored to be a mommy to my living child, and honored to be the mommy of my three in heaven.
I am broken for a dear special friend who is hurting with so many questions and disappointments. I wish words could heal and "fix" things. I wish there were answers to be found. I wish I could understand why so many of us struggle in the quest for a family where others seem to be able to have their husbands just LOOK at them and they get pregnant.
Infertility, the quest for answers and the journey of treatment...the hopes, the dreams, the realization that not even the medical world can fulfull our hopes and dreams...it is such a rough journey. Even when we finally hear the words "positive"...words many of us have spent YEARS praying for...even then there is no garauntee for the happy ending. Even then we are faced with heart ache and sorrow of having to say goodbye to the child/ren we dreamt so deeply of.
Never have I ever wanted my sorrow to overshadow my joy with Evan. He is my light. He is my laughter and my silliness.
Even as I type this...my monkey child has decided he does not need a nap this morning even though he is exhausted...and it kills me to listen to him jabbering away and not just go in and swoop him up and giggle with him.
Even though each day holds that place of missing Zac...I have Evan here in my arms. And Evan needs to know that he is so loved, and so cherished, and so the answer of my prayers. As angry and hurt as I am at God...I am also thankful and humbled and grateful.
I often get told "God understands, because He watched His son die too." But...God also got to watch His son rise again three days later and sit at His right hand. My son did not...not on this earth anyhow. I know his earthly departure brought him to an eternity of life in abundance. And I know that I will be joined with Zac again one day in heaven...but it's the days we are apart that hurt.
Yet Evan is here!! He is my light and the air that I breathe. And I am filled with joy! My son is well, and has overcome the odds! He is my champion!
And today I want to just bathe in that joy. I want to fill myself with the awe of watching this little monkey flying all over the house, destroying things and scattering everything in his path of destruction.
I want to watch this little 2lb 9ou baby who once lived in an isolette with his mommy wondering so many things and dreaming so many dreams...now getting the opportunity to LIVE some of these dreams! I want to wrap Evan in the love and joy he deserves.
I have Zac tucked in my heart, and Evan in my arms. For both I am forever blessed.

Thursday, March 25, 2010

Musically engaged...I have sound now!!

So I finally figured out how to include music to my blog!! Sweet!!! Each song holds SUCH specific meaning to me. Except the intrumental one...I just found that one and liked the title and the music! So I included it. "His Eye is on the Sparrow" is a song I haven't listened to since we lost our first twins in '07! When we found out we were expecting identical twins I remember listening to my Selah CD (I love that group) and listening to this song and deemed it the "theme song" to carry me throughout my pregnancy. But I would sing "His eye is on my sparrowS"... Little did I know I would lose that pregnancy...and not even realize it until I was told at my 12 week ultra sound that our babies were no longer with us. From that day on I never listened to that song again. It hurt too much. I felt silly for putting such meaning in to a song. I couldn't find the songs that I would play for Zac and Evan (literally from the moment they were transfered back to me until the day they would be born). Otherwise I would have included those. But guess what...once again I have not been able to listen to those songs. Two were included in Zac's funeral...and that was the last day I listened to those songs. Again...I felt silly for putting such meaning in to songs. HOWEVER...I am grateful that I had those songs to encourage me along the days in each of my pregnancies, regardless of the endings. AND...I will once again listen to my two choice songs from my pregnancy with Zac and Evan because Evan is here. And those songs meant something to me and my boys. And I will play them again one day for Evan when I know I'll be able to make it through without crumbling to the floor. Music has a way. A way to make us feel silly, brave, funky, "jiggy", happy, sad, somber, reflective, emotional. Music has a way to touch a persons soul in ways nothing else can. Music can and does heal. I'm learning something. I've always put my hope in my pregnancies on things that seemed to be "signs". Special dates that I thought reflected God's answers, special songs or verses that I figured were telling me things would be okay. With my first pregnancy my due date was June 26, 2008. I figured for sure my babies were going to be fine because June 28th was mine and Brett's wedding anniversary date and that it MUST mean that we were going to receive the greatest wedding gift ever...our babies, after years of heart ache wondering if we would ever be parents. So when I lost the babies...I lost a date of "hope" and what I figured was "promise". When we found out that we were once again pregnant with fraternal twins, after the first initial waves of pure fear and terror I believed that this meant for SURE our babies would be okay. Because why after losing our first twins would we endure another loss. I believed that this pregnancy was a redeeming time for all that we had lost. I believed that I'd experience a complete ending. Wow...what does a person do when everything they believed comes crashing down. First, you feel like a niave fool. Then you feel cheated, angry and hurt. Then you recoil in shock. Then you get angry some more. Then you feel like a fool again. Then you question everything you believed. Then you get angry that once again you "appointed" special songs and verses that you now no longer want to look at or hear. BUT, over time...those verses and songs slowly find their way back to your heart. You remember the peace and the certainty you felt entrusting that pregnancy to God and the words that came from your mouth "no matter the days, I thank you for these children. No matter what...I know You hold them in Your hands. I ask for a lifetime, but will cherish the time I am blessed with". WOW...be careful on how verbal you are in your strength and faith...because IF something happens...are you going to back up those initial proclomations? At first...I couldn't. I was beyond broken and angry and hurt and devastated and felt so stupid and niave and blind-sided. But, only after these past one year markers of Zac's passing, I can say "thank you". Thank you for allowing me precious moments and memories. Thank you for allowing me to get to know my son even for a little while. Thank you for allowing me the "honor" of holding him and loving him as he returned back home. Do I stop hurting? No. Do I stop questioning? No. Do I stop believing? NO! Through it all, God owed me nothing. He owed me no child. I didn't "earn" any special blessing. I wasn't owed any miracles. It doesn't mean I didn't hope, believe, asked, prayed. I have been blessed through joy and through pain, through blessing and through loss. I'm just as important as the next person to God. He hasn't forsaken me. He loves me and both...ALL my children. He didn't dangle my sons in my face only to say "ha ha ha, oh Heather, you are so gullible!" He showed me love through both of my sons. Yup, I know He understands losing a child. I know He understands what it is like to watch as His son dies. Does it make it easier? Nope. Do I find myself saying "then if you understand what it's like...why didn't you protect Zac more?" With shame on my face my answer is...yes. Do I feel like I am broken? Uh huh. Do I feel like I am defeated? Not so much any more. Do I feel like I am scared of the future and trusting again? Ya. Will I stop trusting? Nah. Music...it's finding its way back in to my soul again. Healing spots and mending others. Cushioning blows and encouraging others. I will sing with Evan. We will dance and be silly. We will laugh and I'm sure days where we will cry. I want to instill things in to Evan that have been important to me...and music is one of those things. Evan LOVES humming. It's adorable. He has music playing in his room all through the night and at nap times. It plays while we drive in the car. He loves to plunk the piano keys at both his grandparents houses. He loves to bang on pots and pans. He loves to bounce to the beat of music. When I wanted to really feel the boys moving I'd put my ipod earphones on my belly and play some music and away they would go! It was awesome! It is a good memory. Thanks to music! Anyhow, I'm just babbling here. Turn up your volume. The music will begin to play automatically when you open my blog now. Scroll to the very bottom and you will find my play list. I hope these songs touch pieces of your heart too! Enjoy...the music!!

Wednesday, March 24, 2010

Emotionally spent today!

The foot castings done of both Zac and Evan's feet after they were born. It is something else to hold those tiny castings in the palm of my hand now!
Evan has officially mastered standing in his crib!!
Obviously he is QUITE proud of himself!
And he has become my yoga guru!! Downward dog pose all the way!!
Evan Bailey is no longer off limits!
Today Evan had his regular physio appointment. Just the usual. He goes, plays, I learn more technical stuff that no "normal" parent has to deal with when watching their child growing.
There are no concerns with Evan. He is right on track and doing amazing! I'm always so proud of each of his milestones, and another month with no issues. He is my rock star for sure!
But today at the place he goes (Kinsmen Childrens Center - the Alvin Buckwold Development Program), they had a huge clinic day. The KCC is to help children with physical and development problems, and the majority of patients (the children) do have some form of disability on varying degrees. Today I saw more children in wheelchairs with major physical/mental setbacks than I have ever seen.
I know I mentioned in a post long time ago that the day we said goodbye to Zac we were heading back to my room and the first thing we saw were parents working with their older son...stretching each muscle and massaging each muscle. Their son could not speak, could not properly independently move and would be forever confined to this wheelchair...short of a miracle.
None of us said a word (the people with me). None of us said what we learned we were all thinking after what we just went through with saying goodbye.
That if Zac had somehow miraculously been able to pull through all that was happening to him...he would never be a normal child. Never talk, walk, look at us with eyes more than those of the three day old son we knew. He would forever be confined to that wheelchair. Because of the extent of the devastation of his brain bleeds...there would have been no miracle of full recovery.
Today I was faced with that reality again. But you know what...I would have accepted it. I would have brought my son home and worked with him every day had he been able to survive. The selfish part of me would have held on to him for dear life. The selfLESS part of me knew I had no choice but to have to say "until eternity buddy".
Am I grateful knowing Zac did not have to lead this life here on earth the way it was expected of him had he survived? How can I say I'm GRATEFUL...because that would mean I am okay with the fact that I had to say goodbye. I don't know what word I would use?! I don't know how to describe the end result of saying goodbye.
Yes, I am grateful for Zac that he never had to suffer. But I'm not grateful that he ever HAD to suffer. I'm very UNgrateful for that. Still very angry that what happened happened.
But today I watched these selfless parents with their children...and my heart went out to them. They are making the best of every day, but I know it can't be easy. They are amazing. Their children are beyond precious.
When we first got to the waiting area to meet Evan's physiotherapist there was a girl in her wheelchair. I'm not sure her age, but she wasn't young. She can't speak, and her muscles and joints are very stiff. But she could sure smile! She saw Evan and this precious childlike excitement came over her face. She made these excited noises and moved to her form of waving. And Evan just smiled at her and started clapping.
From that point on, my heart melted, and ached all at once.
I can never be grateful enough for the blessings in Evan's life. For his health, his development, his will. He truly amazes me. We have been blessed with this awesome child who has overcome so many obstacles with so little set backs! I hate when doctors remind that things can "creep up" over the first few years. I don't need that fear placed in to my mind. I know my son. I know he is doing amazingly well. I don't believe setbacks are in his future. I believe he has such purpose for his life. I believe his life is an encouragement to other preemie parents that even though our story shows both sides to such an early birth...we are living stories of both extremes of outcomes. And although sad things happen...so do good. So do VERY good things.
As we left from Evan's appointment and I started to drive away...sobs just began overtaking me. Not pity sobs. Not selfish sobs (well, not totally selfish). Just painful sobs for another reminder of what Zac would have been faced, and for what Evan has been spared.
And even as I type this post the tears just will not stop falling.
I have no choice but to be grateful that Zac was spared...even for what that means. Don't get me wrong...I would have taken every moment with Zac too, regardless of the struggles. However, I am grateful that both of my sons are well. Just in different places.
I am grateful that Evan has been spared physical delays, mental delays. I am overjoyed by who he is becoming. And I pray for his protection for every day of his life!
His physio was really happy with Evan's progress and to hear that he is pulling himself up on things! Yup...Evan is forever standing up in his crib, and the couch. Today after we got home he crawled over to the couch, stood up, let go and stood there for a second and then plunked right on his tooshy! He was quite proud of himself.
So we are graduating to working on his standing strength, but not yet encouraging the finger-walking.
That's the thing with physio...I'm learning the textbook phases of what is desireable for a childs progress...but again I don't get to be just like any other normal parent just watching their child growing up.
Don't get me wrong, I don't feel hard towards that. I am MORE than happy to do WHATEVER Evan needs! And I know that this is for his well being to ensure he stays on the right track.
Some days I just wonder what "normal" feels like. But I do know that every day is a blessing with Evan in our lives.

Tuesday, March 23, 2010

Another post for the day...

I've shared before how music always seems to touch places in my heart and soul that nothing else can. Last week on the hunt for a gift for someone else I listened to a preview CD of Casting Crowns. The CD is called Until The Whole World Hears. Anyhow, as I skimmed through each song a couple just really hit home. And the tears welled up in my eyes. I had to quickly head to the bathroom to regroup, and then I decided this CD was "worthy" of my purchase. I listened to it on the way home...and cried some more. I just wanted to share the lyrics to a couple of these songs. It's not the same as listening to it as this group sings, but the words I hope will resonate in the mind. The first song is called "Always Enough" In a dry and weary land/ Lord, You are the rain / In a sea of shattered ones / Your love comes rushing in / You hold the world within Your hands / And see each tear that falls / Through every fire and every storm / You're always enough, always enough // Your love is peace to the broken / Faith for the widow, hope for the orphan / Strength for the weak / Your love is the anthem of nations / Rings out through the ages / And You're always enough for me // You keep my heart in perfect peace / My life is in Your hands / When confusion hides my way / You're always enough, always enough // I rejoice for my Savious reigns / I rejoice for He lives in me / God on high, He has set me free / Worthy is the Lord // I rejoice for my Savior reigns / I rejoice for He lives in me / God on high, He has set me free / Worthy is the Lord // In a dry and weary land / Lord, You are the rain The next song is called "At Your Feet" Here at Your feet, I lay my past down / My wanderings, all my mistakes down / And I am free // Here at Your feet, I lay this day down / Not in my strength, but in Yours I've found / All I need, You're all I need // Jesus, Jesus, at Your feet / Oh, to dwell and never leave / Jesus, Jesus, at Your feet / There is nowhere else for me / There is nowhere else for me // Here at Your feet, I lay my future down / All my dreams, I give to You now / And I find peace, I find peace // Here at Your feet, I lay my life down / For You my King, You're all I want now / And my soul sings...// 'Cause I am free (here at Your feet) / All I need (is at Your feet) / I find peace / We're at Your feet / We're at Your feet // And I am free (here at Your feet) / All I need (is at Your feet) / I find peace / We're at Your feet / We're at Your feet / Here at Your feet / I lay my life down There are other songs with great lyrics too, but these two in particular really touched my heart. Just wanted to share these today too. And hopefully the words will touch anothers soul the way they did mine. Hugs!

Grief vs. Wallow

So, someone I loved recently said they were concerned I might be "wallowing" in the sadness of losing Zac. I didn't like that word. It implied that I am stuck where in the past of what I can not change...and I truly don't believe that is the case...anymore. My reply was "if wallowing defines a mommy's grieving heart and trying to figure out the new norm of life I am in...then so be it". I love this person dearly with my whole heart, so I refused to be offended or hurt. I understood where it was coming from. BUT, it got me to thinking...how does a person define grief over wallowing...and which does society view as more acceptable. Well, I went on line and looked up Grief to see how it is defined. Bare with me...it's long. GRIEF: Grief is a multi-faceted response to loss, particularly to the loss of someone or something to which a bond was formed. Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social and philosophical dimensions. Common to human experience is the death of a loved one, whether it be a friend, family or other companion. While the terms are often used interchangeably, bereavement often refers to the state of loss , and grief to the reaction of loss. Our responses to loss are varied and researchers have moved away from the conventional views of grief (that is, that people move through an orderly and predictable series of responses to loss) to one that considers the wide variety of responses that are influenced by personality, family, culture and spiritual and religious beliefs and practices. Bereavement, while a normal part of life, carries a degree of risk when limited support is available. Severe reactions to loss may carry over in to familial relations and cause trauma for children, spouses and any other family members; there is an increased risk of marital break up following the death of a child, for example. Issues of faith and beliefs may also face challenge, as bereaved persons reassess personal definitions in the face of great pain. Then I went to dictionary.reference.com to look up Wallow. Wallow: 1) to roll about or lie in water, snow, mud, dust, or the like, as refreshement: Goats wallowed in the dust. 2) to live self-indulgently; luxuriate; revel: to wallow in luxury, to wallow in sentimentality. 3) to flounder about; move along or proceed clumsily or with difficulty: A gunboat wallowed toward port 4) to surge up or to billow forth, as smoke or heat: waves of black smoke wallowed into the room. Weeeeeell...I don't really like the term wallow. 3 out of 4 of those meanings don't really seem to apply. I don't think I enjoy laying in the water, snow, mud, dust or the like as refreshment...I think I'd prefer a warm bath with some nice smelling salts or bubbles. I don't see myself as living self-indulgently in the luxury of my sorrow or sentimentality. And I don't know if I'm a surge or billowing force...but maybe in my defensiveness I can surge or billow clouds of anger, hurt and defense. HOWEVER...I CAN relate to the third point. I suppose I have felt like I've been floundering, moving along or proceeding clumsily or with (occassional) difficulty as I try to figure out the new new norm of life. I realize how differently people view pain, loss, grief, sorrow and the process of finding the "new you" so to speak. I spoke to a very special person yesterday who was INSTRUMENTAL in helping us through the loss of Zac and through the NICU days with Evan, and we talked about how years ago society never spoke of the loss of a child. It just didn't happen. And how our society of parents now almost demand it. I see the differences in generations. I see through stories of others (grandparents who lost a child and how it was never spoken about...yet an adult grandchild can still see the pain in their grandparents eyes) how loss was dealt with, and how it is being dealt with now. I still see people viewing the topic of death in a "hush hush" kind of way...and that is so sad. Why is so "wrong" or so "bad" to speak of loved ones past? I still LOVE talking about memories of my Gedo! I still remember how much I loved listening to him laugh and play the fiddle. I have a tape (yes, an actual audio CASSETTE!) of a family gathering while he was still alive and he played the fiddle, my Baba her guitar, my uncle the Symbala (sorry, don't actually know how to spell it) and my aunt and uncle their guitars. You hear the music, you hear the talking and the laughter...and even though it STILL brings a tear to my eyes...I love it! And what is so wrong with listening to it and remembering? What is so wrong with holding on to those memories? And when I go to visit my Baba, I still sneak out by myself to go to my Gedo's grave. And I just chat "with" him. And ask him to hug all my babies in heaven for me. Is that wrong? Nope. It's my thing!! It's the same way I feel about Zac. When I became pregnant with the boys and was sent to the specialist (because we knew I'd be high risk with multiples again), we knew we could bring a video cassette (yup, an actual VCR cassette!) to record each of our ultra sounds. I remember the day we brought that tape home and hooked up an old VCR of ours and showed our family our sons! It was awesome!! I haven't watched it since...but some day I want to. And some day I'd love to show Evan too! Is that wrong?? Heck no! It will always be Evan's decision, but as for myself...what is so wrong in cherishing that memory? I don't believe anything. Is that wallowing? No. It's cherishing. And allowing a piece of the past to bring a smile to my face. Does it make me sad that we didn't get more of the recordings we dreamed about? Ya, of course it does. Does it make me sad that we didn't get more ultra sound pictures...certainly. Does it make me regret that I never recorded the sound of both my boys heart beats on NST test days? Yup. But...do I wallow in those sad thoughts or regrets...nope. I can't change it. Events happened that I couldn't control. I don't think that allowing pieces of our past a special place in our minds and hearts and conversations is a bad thing. Sure...if I couldn't function daily, if I couldn't keep my focus on my sweet Evan and my husband, if I lived in a constant state of tears and anguish...ya, then something would need to really change. But I cherish my memories and my moments. And like in the definition of Grief...there was a bond. Not just an emotional or dream like bond...but a living physical bond to both my sons who bumped around, kicked, stretched, hiccuped, stretched my belly to the beautiful belly I always dreamed of. So, that bond can't be removed. It doesn't stop being a part of who I am. These little beings were a part of my physical being. They were attached to my body. And although they are no longer inside of me...I still feel it. I still feel that bond and attachment. I will never forget the days after the boys were born and feeling so lost! Thinking that I could still feel their movements. And when I would get the chance to visit both of them in NICU in their separate bays (yet another memory that makes me sad...I wish SO BAD that my boys could have at least been together once...even just side by side in the same bay. That lost memory still hurts), as I watched Evan move about...it was like I could feel those movements inside me. Zac was under medication that put him in a semi paralyzed state so I didn't often see movement from him other than his eyes travelling toward my voice as I spoke to him...but even in that...I could feel him inside me...my little guy with no where to go and no fluid to float around in. But through all the sadness and grief...whatever circumstances that comes by...there has to be a way to emerge from the storm of sorrow and loss. Yes...I can see how people would easily get swallowed by their sorrow. That was me when we lost our first twins in 2007. I got swallowed HARD by the sadness...and it scared my husband wondering if he would ever get his wife back. I love him so very much for the way he helped me come back!! I love him for sticking by my side!! And in the past year and few days of Zac's passing, the sadness and sorrow remains...and always will. But...I HAVE to emerge! When I lost our first babies I purchased a book called "Grieving the Child I Never Knew" by Kathe Wunnenberg. Part of one chapter talks about hiding in the basement through a storm and that for a few moments one can disonnect for a while. But there is a paragraph that I appreciate... "But the pain of your loss hasn't gone away. With time you must realize you cannot live in the basement forever. When you finally ascend to face reality, you may be surprised to discover shattered dreams, a broken heart, emotional debris, uprooted expectations, and damaged relationships. But you will also find peace in knowing that the strom has passed. Sure, you may have a lot of cleanup work to do, but there's unlimited eternal aid available. God will help you face the truth and will work with you to repair the storm damage. You will feel safe in His presence and in His Word. He wants to be the One to whom you run for shelter as you continue your journey." It is so true that through grief many changes occur. Especially relating to relationships. Loss is uncomfortable. It's hard for people to continue sitting by your side in moments of tears, especially when they have not gone through a similar situation. There is awkwardness. Moments where people don't know what to say...or if they should say anything at all. Yes, I would love to hear Zac's name spoken along side of Evan's when referring to their birth...but I know there will be many times...probably all times...where that won't happen. I have to come to a place of acceptance that MY loss is not the loss of another. That I can't expect people to respond to our loss in the same way that I do. I can't be offended when Zac's name isn't spoken. All I can do is wrap him in my heart for a squeeze. And try to be understanding and accepting of how others process the present and future. Yet, I don't want there to be the sense that his name should never be spoken. It's just all so wierd and hard to wrap my head around. It will never be the way I hope, and I have to find a way to accept that. I CAN be forever grateful for the life I DO have. And I am. I know I don't talk about that as often as I should...but I AM grateful, and I AM healing, and I'm NOT wallowing, and I AM trying to be the strong person everyone THINKS I am. I WANT to be what everyone expects and assumes. I WISH that some relationships hadn't been damaged through my grief, but I ACCEPT that life can change things and people. It doesn't mean I still don't care. I always will. I want people to understand and accept that there is NO TIME FRAME for grieving. You can walk along side me and encourage me and help me to live in the moments of life and help me smile and laugh and live. But don't push me away, and don't get uncomfortable around the emotions of my reality, and don't make me feel like a lepper for moments where my eyes might get misty, and please...don't pretend that I didn't lose a child. You don't have to talk about it...I get that it can be uncomfortable...but don't forget or pretend that I am the mother of two sons. Evan is this amazing joy. He is this unimaginable abundance of joy and love. I know I've said it before...but I can NOT imagine my life without this little guy!!! Without my son. It would destroy me. I've been looking back at pictures from the first of his early days...and I am blown away. For all that he has come through...he is my strength! And he is where my energy and love are poured in to. I so badly want to be the very best mommy I can possibly be for this precious, amazing gift that I have been given. Yes...I am the mother of two sons, but I am the mother of my living child...my Evan. And I can't allow him to be overshadowed. My journey now is to find healing. To find strength. To find courage. To find the abilty to raise Evan knowing about our faith. And some day...to find peace with all that has happened. I often shudder thinking of all that could have happened to Evan. He was just as frail, just as early, just as compromised...although he had health on his side. He was healthy, and is. He was strong, and is. He was courageous, and is. He was a fighter...and still is! He fills me with amazement! I want to be an example of a hurting, grieving mother...but also of one that wants to find her way back to life...fully. Not for a moment do I want darkness to overshadow the light of life. Yes, I'll always be sad...but I am finding joy again where it was lost in the pain of losing Zac. I've always had joy where Evan is concerned. Don't ever doubt or question that!! I will have many ups and downs. The journey is nowhere near over. I'm learning how men and women grieve so differently, and some day will post about that too. And I know that life involves loss...and the journey. But for now...I just want to send out huge hugs to the many many many parents who have lost a child. To the many people who have lost loved ones. Know you are loved. Know you are not alone. Know that you are thought of...even though I don't know you personally or your circumstance. Know I pray for peace and not darkness to consume you. I pray for support and network systems and for communication to remain open between you and your spouse. I pray for God's comfort...even if God isn't a part of your life. I don't know who all I am talking to. But I still want you to know...I care!

Thursday, March 18, 2010

The final marker...and looking ahead

Well, on the 16th is was our final one year marker. The day we drove to the cemetery for Zac's burial. I remember the day was cold, dreary, windy and snowing. It was ugly...the way I was feeling inside. I remember as we got in our car to leave for Zac's burial it was the second hardest drive apart from driving to his funeral. Still an utter disbelief for what was happening. Still in complete shock. I don't remember the directions we were given by the funeral director, I don't remember the words spoken by the pastor...I just remember the pain of the day looking at our son's tiny casket one last time. And knowing that as we left it would be lowered in to the ground. What parent wouldn't just want to scoop up their child and just run far far away. But that was not the way we got to end things. After the short service and after saying our final farewells, we got back in to our vehicle...and drove away. Both days, the funeral and the burial, I knew I could no longer do anything for Zac. Knew my days as his earthly mommy were over. And all I could think about was getting to the hospital to be with Evan. That was my place now. By his side to let him know I was with him every step of the way. I remember loving family wanting me to lay down and rest...but that was impossible. The moment I would close my eyes I would relive my pain over and over and over again. Rest was not an option. I had to keep going because it was the only way I knew to keep breathing. On the 16th I went to the cemetery for our final one year marker. Sat once again and wrote a note, this time not just to Zac, but to myself, and to God. The day was beautiful. Very opposite of last year. The sun was shining, the wind was cool but gentle, and the snow was melting. It was almost "perfect" as a reminder to me that with each day there is newness. With each day there is something to look towards. I wrote in my note that never in a million life times would I ever forget Zac, nor would I ever stop loving him and talking with him or speaking his name. But that I know he wants me to move forward. I can not change the past, and the present is what it is. But it is also beautiful. It's hard for me to say that, because it's hard to let go of the sadness. And there will always be sadness...that goes without say. BUT, I have to come to terms with what is. Not what I wish could have been. On the 16th I walked from Zac's grave and drove away from the cemetery with the usual tears...but this time resolving to look ahead. Zac will always be a part of that...but I HAVE to figure out the new norm. Life has been good. As much as many times I don't feel that way, it has. And I hope that it will keep getting better. I have hopes and dreams still. But most importantly I have Evan and Brett here who need all of me. There will always be a spot reserved just for Zac, as there is with Jack, Ethan and now Evan and Brett. Special pieces belong to special people in my heart. Yes, I'm sure a lot of my entries will still contain moments of confusion and grief...but I hope that now I can start to focus on how to move ahead...without forgetting the past, but without the past overtaking my present and future. I still feel a very real part of the NICU, and will always do something yearly for them to honor both my sons, but to return what they did for us. And I hope that through that other parents going through the nightmare of NICU and nothing "typical" of what they dreamed of will feel love somehow by a complete stranger. Strangers reached out to me during those days, and I will never forget them. And I hope that I can repay somehow. I'm still grieving...not wallowing. I'm still a mother who lost a child...not a robot who can just forget and move on without ever feeling her childs presense near her. BUT, I also need to find renewed strength and renewed hope. I need to believe once again that hope and faith just aren't pretty words. I held on tight to those ideals for many years, and I need to grab on once again. I need to become vulnerable once more. I think of so many who have suffered the loss of a child. So many who went full (and past) term only to lose their child in shocking ways. So many who never got to hold their child before they went home to heaven. My heart is always with these special people...because just as I feel no longer a part of the special and unique world of a mother of multiples...I am a part of a special and unique world of mothers who have lost and who are trying to rebuild themselves once again. No one can imagine our pain, no one can "only guess" what it feels like...because there is no pain comparable. There is no understanding what has not been experienced. And thank God for the many who have not had to go through this living hell! I am not strong. I am not amazing. I am not commendable. I am breathing. I am moving one foot in front of the other. I am focusing on the life I DO have and realizing I need to be completely here for the men in my life...my son and my husband. I want to be strong, I want to be amazing, I want to be commendable. And maybe one day I might see myself as that, but right now I see myself as someone fighting to find the beauty in each day. Again, I have to point out that when I say that, I mean through the sorrow of the loss of Zac. See...it gets very tricky, because when I make comments like this and share these thoughts I'm sure many people think that I'm not focusing on Evan and not feeling the joy and love for him. Wow...couldn't be more wrong. This is where the agonizing part comes in with grief and joy...the tug of war between emotions. Because with Evan I feel an abundance of love, joy, hope, strength, courage, and fight within me. He is my today and my tomorrow. He brings smiles and giggles and laughter and comedy moments. He is my example of strength, courage and fight. Look what he went through. Oh, if only I could truly share the fight that boy gave during those 66 NICU days. The very memory brings tears to my eyes now. He amazes me! And all at the same time puts me to shame for the feelings of weakness I can feel. But now it's time to carry Zac in my memory and my heart, but to hold my Evan in my arms, my heart and my eyes. And I hope many of you will continue to journey along my side and watch as Evan grows, and the lessons I learn from him, and the relationship that I begin to rebuild with God. I've kept God at arms length and didn't want to allow myself to trust Him again because I felt betrayed and let down and like we weren't good enough for the miracle of Zac to live...but I look at Evan and realize...how could I not trust Him? Look at all He did for Evan, and continues to do daily!! Again, I will never understand, but now it's time to stop trying to (hmmm, easier said than done I know!). It's time to find who I am once more. It's time to love both my sons without wishing days away. Grief has no time frame. And I'm not saying that I'm magically going to stop grieving. But it's time to give life a chance to show me what it has yet to offer. I'm terrified, but I have to see. Hugs, Heather

Sunday, March 14, 2010

2nd last "one year ago"...Zac's funeral - Mar 14/09

Today I went and just sat at Zac's gravesite. Took my fold up lawn chair and paper and pen and just sat and wrote Zac a letter. I take him letters/cards all the time. Milestone days, days where I just want to share my words with him...
One year ago today was Zac's funeral. I am down to my second last "one year ago" marker.
I remember waking up that morning thinking how this was all so terribly wrong. That I was going to somehow walk in to that church and hear "it's a miracle...Zac is breathing." I know...totally irrational thinking of a desperate mother.
Instead as we drove up to the church and walked through the doors, I didn't know how I was going to move one foot in front of the other. How was I going to face all these people? How was I going to face that tiny white casket at the front of the church? How was I going to watch our tribute video that Brett made, and listen to the tribute I wrote? How were we to walk down that same aisle where we walked down almost 13 years ago to get married...the happiest walk of our lives...now the most agonizing?
Yet...I did it. Yes, my legs shook like frail, smashed up leaves. Yes, I wept. Yes, I felt like my heart was forever gone. Yes, I was afraid wondering if during the service we would get another panicked phone call from the NICU regarding Evan. Yes...I was broken and weak and tired and oh so very angry. How can I express the agony and anger I felt?
I never knew so many tears could fall from ones eyes...yet they did. And do.
Brett was going to be the only one carrying out Zac's casket after the service. I was still recovering from my c-section and had a hard enough time walking let alone carrying a casket. Yet...at the last minute just seconds before the service ended I leaned over to Brett and tearfully wept "I want to carry him with you. I am his mother...I NEED to carry him with you. It's all I can do now."
And even though it was the most agonizing and heart ripping experience...I am so glad that I did it. It was the final act of me as a mother to my son. My final way of caring for his needs. But placing that tiny casket in that herse, was one of the worst experiences of my life!
I wondered how I would face people after the service. How was I supposed to thank people for attending my sons funeral? How was I supposed to stand in that receiving line hearing over and over "I am so sorry".
And yet again...I did it. Not without scars, not without pain, not without tears. But I did it. Thank goodness for some friends who rely on the value of sillyness to help one crack a smile. :)
And then through the day of the funeral I held anxiously to my phone praying, begging that the NICU would not be calling with another blow to us. And...it didn't.
I remember asking the girls...the nurses...to "please give Evan extra love today. Today is his twin brothers funeral." And...they did! They made him a "Happy 1 Week" Birthday Card. They definitely loved my little boy for me that day. And the second I could get back to the hospital...I did.
While I was visiting Zac's gravesite today another woman came to the childrens area. It's called "Little Angels"...very fitting. Just a few plots down from Zac. She said hello to me with a tear in her eye, as tears were pouring down mine. She spoke to her little grand daughter, told her she loved her, had a little visit and placed a rose on her plaque. She shared with me the sadness of her grand daughter...stillborn. Then she asked me who I was visiting. I told her about Zac, and Evan and their journey. We chatted for a while. We noticed a new addition to our "garden of angels" between her grand daughter and my son. No plaque rests here yet, but there were three pictures of a precious little boy displayed. He looked like he lived for days/weeks...I'm not sure, but he was in a onesie in one picture with no tubes or wires. I don't know his story, I don't know why his mommy and daddy had to say goodbye...but I found myself wheeping for this little sweet soul. Before this grandmother left she came over to me, gave me a hug and told me she was so sorry for what I was going through. I thanked her. She has no idea how much I needed that today. No idea how desperately I needed another person who understands this pain to just hug me...a complete stranger.
I continued to sit in the sun and the chill of the wind and talked some more with Zac. And then it was time to go home.
It is never easy to leave the cemetery. I leave my sweet boys body every time. And I hate that. Even though I know that I carry him in my heart every second of every day.
When I got home, I scooped Evan up, hugged him, kissed him and played with him. Then bundled him up and put him in his stroller and we enjoyed a beautiful walk together. These moments mean the world to me. Although I always ache watching him playing alone and jabbering alone and napping alone...I pray that my love will fill him up to overflowing.
My boys are my heros. My boys have taught me so much. My boys continue to teach me so much every day.
Since I am able to give Evan extra long cuddles and kisses, I am asking God to give Zac an extra long cuddle and hug. Asking that He tells my son how very much I love him.
Today a stranger reached out to me. Today a stranger validated me. Today a stranger made me feel...understood. Today a stranger did not back away from the discomfort of a sad situation, and she reached out to me. Today a stranger was my angel. I thank her for what she gave back to me today!

Saturday, March 13, 2010

But for today...

I've had so much on my mind lately. Some of it encouraging, some of it "down", some of it I'm ashamed to admit. I realize how much I focus on the past and the future...but struggle with the present. Allow me to try to explain. I often feel (well, ALWAYS feel) the emptiness of the place in our family where Zac, and our identical twins Ethan and Jack should have been. I feel the sadness and the sorrow of a grieving mothers heart. I face yet another one year marker (and one yet to happen) of tomorrow, the day we walked in to our church...not to have our sons baptised, but to have the life of Zac honored at his funeral. I will never forget the feeling that overcame me as we drove up to the church and saw the herse out front, and walking in to the church knowing we were going to face our sons casket...not his face. That tiny white casket holding within it the body of my first born son, wrapped in the beautifully crocheted blanket my grandma had made for each Zac and Evan. It belonged to Zac, so I couldn't imagine not having him wrapped within the love of each stitch and dream that blanket represented to me, along with a few other items that belonged to my son. I know those items didn't go with him to heaven, I know that blanket still rests underneath the earth holding what is left of my childs earthly body...but the love is with Zac in heaven...that I know. There are days where I feel over riden with sadness...even though I laugh and smile and feel unexplainable love and joy through it all with Brett and Evan. There are days where I dream of what the future may, or may not hold. There are days where I feel lost. Days where I feel like I'm wandering aimlessly in my mind. There are also days where I feel the blessing of all my children...on earth and in heaven. I feel each one of them within me. I know each one is well. I will forever miss my heavenly children...but I will forever cherish every single second with my sweet, precious Evan here on earth. There are days where I know my sadness is more about me than it is Zac, Jack and Ethan. Days where my earthly mommy heart aches, yet my children are free of all the sorrow that earth would have presented to them in physical ways. Well, I don't know that was the reason for Jack and Ethan's passing...I didn't even know I had miscarried them. And never knew of a reason why I lost them. Yet another "unexplained" in our journey. There are many days where I see young children bound to wheelchairs, unable to talk, walk, move...and I know that this would have been Zac's future. I can't say that I feel "better" knowing he no longer aches or struggles because in saying that means that I'm "better" with his passing...and I'm not. I can't say it still doesn't confuse me as to why any of this happened to him at all when he was doing so great. And I can't say that I don't still blame myself, even though I know I couldn't have done anything differently. Yet...my sadness is more about me because I know my children feel no pain, no suffering, no sadness. They live the ultimate life! They no longer know the pain of hurting. They are whole and complete. But, my earthly mommy heart misses my babies so much. However...this is me focusing on the past. Even though my pain is still very present. And will always be a part of my future. My encouragement comes from Brett and Evan and knowing that with these two guys...I really do have a purpose. Not that I am defined by being a wife or a mother now, but my life is different now. I have a son who relies on me, and a husband who has always shown me nothing less than love and support. Why am I ashamed to admit something? I hate to even type this because it makes me feel weak, small, pathetic... I am ashamed to admit that I still feel a pang at each new pregnancy announcement around me. Ashamed to admit that I ache in others multiple pregnancy joy because I miss being a part of that special "group" knowing that I will now never belong and will always feel an outsider of what I am technically a part of. I am ashamed to admit that I feels pangs of jealousy. OK, there, I admitted it, and it is out there, and some may shun me for it, and others may fully understand where I am coming from. Don't get me wrong...I am VERY happy for people who can get pregnant and who can carry to term and for those blessed with the happy ending in their multiple pregnancy. I truly am happy for them. And their happiness and their story has nothing to do with my life. It's just that so much of what is around me is reminders of parts of what I have lost...and never know if I will get to experience again. I know I have said this before, but, I truly do hope that we will be able to have another child one day. I really do want Evan to have a sibling, and I really do miss being pregnant and really miss what a FULL pregnancy would have been like. And yet feel soooooooo scared because of the losses and pains we have endured. Will pregancy ever be a truly joyful time for me if I ever get the chance again? I hope so. At some point I hope so. I'm sure by now people think I should be over things. Sorry...nope, not yet. Not ever. It is what it is. All I can hope it that those who care about me will stay by my side and will just help me through. And for the most part I feel that. NOW, what I mean by my title "But for today..." Today I just want to feel normal. Today I want to feel some resemblance of peace, although I don't remember what that's like. Today I want to feel some hope in dreams of the future, although hope feels like a vague word to me most days. Hope is something that scares me because it means I am allowing myself to become vulnerable to the unknown once more...and it's scary. But...for today I want to feel it...I want to feel hope. Today I want to hear another person say Zac's name, just so I can hear it out loud other than from my own mouth. Today I want to look at Evan and not feel like I failed him by not being able to protect his brother. Today I want my husband to look at me a whole person, no matter how tattered I actually am. Today I want to find my way back to God...truly. Ya, I throw out the odd prayer, and still find myself wanting to bargain and plead for things yet to hopefully come. But I want to be able to say, "OK...yes, I hurt, yes, I want to blame you...but I don't. I just want to feel your arms around me again." And I know He wants to hear that of me. I know that for today...He can carry me through...and we'll work on tomorrow - tomorrow. Today I want to soak in my life...and smile. Today I want to remember the joys of the short pregnancy I had. Today I want to remember seeing my sons on ultra sounds, and hearing their heart beats and feeling their little bodies moving all around inside and making me look like an alien! Today I want to remember the hope I felt those 5 weeks in hospital, and remember the awe that the doctors and nurses had in each day and week that passed watching the boys doing well! Today I want to remember how fun it was to have a baby shower that included both my boys while I stayed in the hospital before their birth and for an evening feeling...normal. Today I want to build up strength for tomorrow...but mostly, I want to live for...today. My past will always be a part of my present and my future. It is the way it is. I will never "get over" it, I will never stop wishing people would recognize both my sons. I will never stop aching on milestone days. But I will aim to smile at precious moments. I will cling to sweet memories. I will try to strive to hold on to hope for what might come. I will live for today. I will cherish each day. I will honor Evan by being the best darn mommy I can be for him. I will honor Zac by learning to find peace. I will always hold fiercely to all my children. I am a mama bear! I will try to remember how important one word has always been to me...HOPE. And I will try not to be so scared of it. As all these one year markers have come and are soon to be gone...I realize more than ever...life keeps going forward. I will always have sorrow and moments of tears...and Zac will always be a part of my...OUR, present and future...but life isn't going to rewind and correct the wrongs. It isn't going to pause until I'm "okay". It isn't going to cushion the future and what it may or may not hold. Life goes on. People come and go. We love, we lose. We laugh, we cry. We cherish, and we ache. The good and bad go hand in hand. No ones life is perfect...those who try to pretend it is...are lying. But we all learn how to move through each day. I am just not afraid to show the side of life where people allow themselves to be vulnerable in the truth of their emotions. It is how I am coping. After I do a post I often find myself going "did I really just type that? Does it really matter to anyone? What are people going to think of me?" And honestly...I hope the vulnerability and the honesty and openness can help someone who may struggle in these things. Knowing that it's okay to ache and hurt and question...as long as we can keep moving forward. We may never forget our circumstance or our losses...but life moves on...and we need to find the strength to move on with it. However that new "norm" comes about. I'm searching that one out. I am trying my best to be my best. In living for today, and tomorrow...but not forgetting yesterdays. How can I? And that's okay...as long as I don't stop moving forward. There is so much more ahead...and I have to rebuild strength, courage...and once again...hope. "But I am trusting You, O Lord, saying "you are my God!" My future is in your hands." Psalm 31:15

Friday, March 12, 2010

Mommy's little helper

Helping mommy by UNloading the dirty laundry from the basket!
Getting in to mischief and everywhere he shouldn't be!
My Wild Child! :)
So Evan is just a wild child! He is in to everything and crawling everywhere! It's quite funny...and tiring. But tiring in such a good way. Just thought I'd share some fun photos today while I process other thoughts in my mind for another post.

Wednesday, March 10, 2010

Most precious day...one year ago today...

Four days after our boys were born, I finally got to hold Evan for 5 short, but precious minutes. I couldn't believe just how tiny he was. 2lb 9ou really does feel like air!
Talk about crazy emotions. The very way I held Zac was the way I held Evan...both amazing, precious experiences, yet so very opposite in emotion of sorrow and joy.
My teeeeny tiny wonder. Barely 29 weeks gestation here!!
One year ago today, 4 days after the birth of our sons, and the day after Zac passed away, I was allowed 5 minutes of beautifully torn emotions of holding my sweet, tiny 2lb 9ou little miracle man! This little boy who was still supposed to be growing inside me for another 12 weeks was now in my arms. The day after I held his brother as he passed to heaven, I was holding my little son Evan and experiencing the most crazy range of emotions of sorrow and grief along side joy and pride.
Holding Evan was amazing. Holding this itty bitty little baby, whom I could have held in one hand...was unbelievable. These precious boys who were supposed to be within me for another trimester were in our world...and in heaven.
Holding Evan felt like a dream. And 5 minutes was just not long enough. Knowing that I'd have to be satisfied with watching him grow our last trimester within an isolette...the fill-in womb that should have been me...was tough. Wondering how each day would go, knowing that anything could happen. Constantly on guard from the reality and nightmare of losing Zac.
I would stay be Evan's side from morning to night only to leave during morning rounds and evening shift change or to pump every 3 hours. I ran solely on adrenalin for those 66 days. It eventually caught up with me, and at my 6 week post-op check it was discovered that I had developed a post-op infection. Truly, it didn't surprise me. I never took the time to try to heal. My life from day one was trying to sort out a funeral while being with Evan every day. I couldn't handle being in my house without either of my boys.
The day I was discharged and came home was one of the most painful days of my life. Out the doors of the hospital we walked (well, me wheeled)...without either of our sons. One never to walk out those doors with us, and the other with us wondering if we would be able to bring him home.
Walking in to my house opened flood gates of anguish that I never knew existed. I remembered all too well the day we came back home after my D&C after we lost Jack and Ethan...but this was a pain I never knew could be a part of my life. I would never bring Zac in to our home outside of my womb...and at that time had no idea what was in store for Evan.
But for today I will stay focused on how I felt holding Evan. Feeling his hands on my skin. Listening to him breathing. Kissing his precious little head. In absolute awe at just how tiny this little child of mine was. Head spinning that after all these years of tears, pain, wonder...I was holding one of my sons! I was holding my living child. He was here in my arms...it wasn't just a dream! It was amazing. It still IS amazing every time I have Evan in my arms. Except now I can't hold him in the palm of my hands...he now drapes over me with his 21 pound body!! :) He cruises all over the house and my dogs are now forever on guard for the little being who wants to crawl over them and grab their feet!
Evan brings a joy that I never new could be mine. Even though there will always be the sadness of missing Zac...I am finally getting to a place where I no longer feel guilty for the joy I feel. Zac wouldn't want me to feel guilty...he would want me to live each moment with Evan in joy and love and happiness. And I can do that!! I love to do that!! Evan amazes me every day...no matter how exhausted I am at the end of each day after a day of chasing after him!
Evan had his one year (uncorrected age) check up today. How fitting that it would be today of all days! That just dawned on me!! My doctor was just blown away at how well he is doing! He is even now well on the charts for a full term baby!!!! Still in the 25th percentiles for uncorrected age (he is way on the charts for his corrected age!), but she was just amazed by that! It was nice to hear that excitement! When Evan was getting weighed the assistant said he no longer has to strip down...he's graduated!! And he didn't get weighed on the baby scale, but got to sit on the "big people" scale!!! My little guy weighed in at 21 pounds today and is 29.5 inches long! WOWZERS!!!!!!!
My doctor did hear his heart murmur again. He has had that since NICU days, but his NICU docs never felt concerned with it as it would come and go and sounded very mild. My doctor was surprised that they never did an ECG, so she is just going to follow up with Evan's NICU doc, but figures she will be told that it is of no concern.
Me and my brothers were born with heart murmurs too, and they are very common. Mine progressed in to Mitral Valve Regurgetation, but is not severe. I just get treated with antibiotics prior to dental work, surgery, anything that might create an access point for infection. If infection occured it could create damage to my heart valve and in worst case senarios can be fatal. But that is not the case. I'm okay!
Anyhow, I just ask that you all just say a prayer for Evan's murmur even though I am not concerned about it. But still...prayer couldn't hurt!
Well, I just wanted to share some joy today. Every day I look at Evan I feel joy. I love my little man, and I love each moment with him. He is precious beyond words, and I am blessed to be called mommy to both my boys!!! xoxo

Tuesday, March 9, 2010

The most excruciating day of my life...

I couldn't believe it when I found this tshirt yesterday. How absolutely fitting and perfect for Evan to wear today...the day his brother had to leave us. A tshirt with boxing gloves on it!!! Boxing gloves are always how I've symbolized Zac as our fighter boy...but the truth is, BOTH our boys are fighters, but won in very different ways. Evan is wearing this tshirt today (picture from this morning), and how perfect to have Zac with us in even the littlest way! The last moments with our son. "Preparing" to say goodbye. How does a parent do that?!
Our sweet boy got to enjoy moments of "freedom" from all his tubes, medications, air being pumped in to his lungs. He got to be "normal" for a while, while we held him, sung to him, loved him and told him how proud we were...ARE of him.
And my final moment with my sweet boy Zac, who fought so hard for 5 weeks to protect us. I just wish I could have protected him more in return. Here in my arms I held my son and protected him as best as I could while he slowly went home to heaven. Oh how I miss those tiny hands on my skin, that tiny body against mine. How I wish I could still feel you, see you, and watch you grow.
Looking back at these pictures I feel grateful for the days we had with Zac. As brutally painful as they are to see, I had an opportunity that many women do not get...time with their child. Even if it is while that sweet child is living his/her last moments on this earth.
The memories hit HARD last night while I lay in bed remembering how my nurse came racing in to my room to wake Brett and I up saying the NICU wanted us there immediately. We knew the news was going to be grim. But when we got there, Zac had "pulled through". So I had hoped. He had been crashing, but came back. I left that unit believing, hoping...begging that we would not receive more bad news. And that belief and hope were crushed beyond recognition later that morning when we received the worst news of our lives.
I ask the question "how does a parent make a choice like this? How does a parent let go of a child? How does a parent hold their child and let them go?" I am that parent. We are those parents. And I still don't have the answers to those questions.
I know I've been told that we showed the ultimate act of love for Zac...but some days it sure doesn't feel like it. I feel like I made the worst mistake of my life that I can never take back. I always wonder...what if? What if SOME HOW he had pulled through. Yes, the doctor told us the brain damage done to Zac was catastrophic. But what if? Yes, we knew his kidneys were failing...but what if? Isn't God supposed to be bigger than all those things?
I don't ask that question in a synical way or disrespectful towards God. But it leads me back to the agonizing frustration of knowing I'll NEVER have the answers here on earth. And I don't know why this happened and what it was all supposed to mean.
I DO know that I was blessed. Blessed to carry Zac and Evan for precious, although much to short, 28 weeks. Blessed to have 3 days..again MUCH too short, with my little Zac. Blessed to have had this amazing gift after soooo many years of wondering if we would ever know what it would feel like to say this words "these are our sons".
I know the reality of where Zac is. I am at least at peace with that. At least I know that he is not just gone. I know that I WILL see him again. And these are reasons why I can't just turn my back on God, no matter how hard I want to pop him in the eye for all this. I can't blame him...yet I want to blame someone. I don't know how to find that peace in my heart.
It's "funny" because like every person who has tried and tried to have a child and then finds out they are pregnant the words "however long I have I will be grateful. I know this is God's child and I will be greatful for the days we have together." come so easily from the mouth...but then what happens when that time is cut all too short? Yes...I am greatful. Yes, I know that Zac and Evan and my sweet Jack and Ethan were/are all gifts from God but ultimately HIS children. I know I did not "earn" them, and I know that God did not "owe" me a child. It's easy to to verbalize this proclomation of trusting and gratitude during the joys of pregnancy...but then what happens when your world turns upside down? Every day is a struggle and a fight to find a way back to trusting and believing that God loves you still and will continue carrying you as long as you allow him too.
I remember years ago someone saying to me "God must know you are a strong person because He doesn't give us more than we can handle." Well...news flash...couldn't be more wrong. I have not choice but to keep breathing every day, and I really hate that "saying".
I don't have answers to so many of my questions. In the depths of agony and sorrow there is a part of you that dies. A part of innocence and hope. It happened when we lost Jack and Ethan, and it happened again when our worlds fell apart with the events of Zac.
I fought tooth and nail over many months to rebuild a broken relationship with God. As many as you read the beginning posts while I was in the hospital those 5 weeks last year, I clung on to God for all I had in me. Yes, you are seeing a side of the human heart broken. Yes, I may have questions and frustrations and anger and sorrow...but I still hold on to hope and belief in my faith. I still know that God is a God of love. I know that He did not do this TO me to break me. I don't know why things couldn't have turned out a bit more different. I don't know why the only place I have to visit my son is a cemetery. I don't know how losing Zac may affect Evan.
But I do know that I am not the first that this has happened to, and I won't be the last. But that doesn't really help my pain.
I continue to be greatful for the joy of days with Zac. I will never forget the way he would look at us when he would hear our voices. I will never forget touching and kissing his sweet hand and head. I will never forget the moments we had together before he went home to heaven. I will never forget the moments of those 28 weeks with him growing inside of me.
Today hurts in a way I knew it would...but hoped I never would have had to. I'm trying to keep it together in front of Brett and Evan. But inside I am crumbling.
I am greatful for the love and support and strength that Brett gives me every day. I am greatful for the giggles and the pride and joy with Evan. I am greatful for family and for friends who have remained constant and present. I am greatful for all of you who follow this journey, even those I have never met.
I am greatful for the faithful comments of love and encouragement given...when I see the 1 comment...I always know who it is that has replied...constant and faithful...and my dear friend...I thank you. How strange how even though I have never met you, I feel very close to you through the unfortunate bond of losing a child. And I pray for you daily and think of your sweet Matthew each day.
Please pray for us today as we remember the moments and events that fell on us one year ago in saying "we'll see you in a while"...never goodbye. I hate the word goodbye!
We are teaching Evan to wave "see ya later"...not goodbye.
And my sweet Zac...mommy will see you later. xoxoxoxo
For you created my inmost being;
you knit me together in my
mother's womb.
I praise you because I am fearfully
and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the
depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Psalms 139: 13-16

Monday, March 8, 2010

March 6th...one year ago! Part one.

Urgently at 10:51pm on March 6, 2009 at 28wks gestation our sweet Zac Michael entered our lives weighing 2lb 5.5ou.
A sign of the beginning of the struggles for Zac with everything that he had to be connected too, and with blood transfusions. But we still prayed and hoped that he would somehow make it through.
Very swiftly, one minute after his big brother was taken, Evan Brett quickly entered our world as well, weighing 2lb 9ou.
You can't imagine how tiny our little boys were! But there is an idea with Evan's hand in daddy's hand.
It is really hard for me to believe it has been a year. The events of the day of Zac and Evan's birth are as fresh in my mind as they were one year ago. The panic, the fear, the knowing that something was going on. For 5 weeks we had prayed, hoped, believed for a grand miracle. Each day for 5 weeks WERE a miracle! Zac continued to grow and do well with little amniotic fluid. And even though Evan had no idea what was going on, and as far as things were concerned with him everything was great...we knew an early delivery would have been just as catastrophic for him too. Each day we kept begging "one more day, please, one more day!" Then "one more week, please, one more week".
The birth of my boys was not at all the way I dreamed. I "planned" to deliver naturally. I "hoped" to hear their first cries and to have them lifted for me to see. Instead I had to feel the OB's hand urgently resting on my belly waiting to be told she could start to get the boys. I had to keep hearing "not yet, not yet". Instead, I have no memories other than pure terror wondering if when I woke up if I would be told they were alive, or dead. I woke up in pure agony from the pain of surgery. I woke up with the last thought in my head being "I'm soffocating!"
I never got to hear their cries. I never got to see them lifted for me and Brett. I never got to hold Brett's hand and watch his face when he laid eyes on our boys for the first time. It was a day before I got to see either of them. Brett was able to show me a picture of each of them while I was in recovery, but I remember waking up and just wanting to scream in fear and begging Brett to tell me if they were okay.
Nothing was at all like I dreamed for almost 10 years. Nothing was like I had hoped would finally be the ending to our quest for a family.
Not only did I feel cheated out of a trimester of pregnancy...I felt cheated out of the joy of the birth of our sons. I lost out again. And when Evan asks me to tell him about that day...I won't be able to. All I can tell him is that "mommy had to go to sleep, so I don't know what all happened."
I often wonder if it will be confusing and hard for Evan to learn of his entry in to this world and the months that followed in NICU. I think about how he might feel every day.
For those who have followed my blog from the beginning, you know the events. You have walked the raw emotion and reality that we lived. Now it's time for reflection...and for me to find a way to move forward. Never forgetting...but trying to find a sense of healing and "acceptance". I will never truly accept what happened, and will never stop feeling so angry about it all. Every time I think about my questions it always leads back to one thing...why did I have to rupture at all when both my boys were doing well?! And I can't answer that question...so all the others just leave me feeling broken and guilty...so it's time to start looking towards the future, and not staying broken in the past. Zac is with me every day. He was a part of my physical body for 28 weeks...and he will always be a part of me in my heart beats, my breath...everything. But I have to start finding a way to let him rest in peace. I KNOW he is in perfection now...I just still wish he was perfectly in my arms too.
I beg of people...PLEASE don't stop saying Zac's name. Don't think for a moment that saying his name would hurt me. You may see tears well in my eyes, but those are tears of gratitude that people aren't trying to "protect" me by not mentioning him. I have to say...it's when I don't hear his name or hear him mentioned when talking about their birthing day...THAT is when I feel devastated. I so badly don't want people to stop saying his name. So I am asking you...speak Zac's name.
Through it all, I am blessed. I am blessed to be the mommy of two amazing little boys who have taught me so much, and continue to teach me so much every day. The pain will never go away, but I'm sure one day it won't completely crush me like it can now.
One year ago March 6th, my sons lived. One year ago they celebrated their first day in this world together. March 6th, 2010 Evan celebrated his first year on this earth with us...and Zac celebrated with his sibblings and family and friends in heaven.
Yes, I wish I could have seen them together. I wish I could watch them growing up together side by side the way it was meant to be. I wish many things.
But this March 6th we sang to our boys, and even though Zac is not physically here...his heart will always be here with us.
Today I watch in awe my son Evan. I watch this wonder and I fall in love more each day. His birth, and his fight through NICU and coming home with us have been such miracles and blessings.
My boys are fighters. They amaze me every day. Remembering one year ago, and now watching Evan one year later...I am amazed. And thankful. And so very proud to be called Evan's mommy.

March 6th...one year ago! Part two.

The morning started with a trip to the cemetery to place a balloon and birthday card on our sons resting place. A very emotional moment.
Unfortunately the letters ran on my cake, but the inscription reads "Our boys R shining stars on earth and heaven." I made a chocolate zucchini cake with cream cheese icing. The small balloon candles have an "E" and a "Z" on each.
Evan truly did not care about the cake at all. No interest whatsoever! It was funny! He tried, gagged on it, mashed it around and that was that!
Opening presents! Having more fun with the tissue paper.
Can't believe our little guy is one (well...also 9mths corrected).
What a week! Emotional, confusing, exciting, heart breaking...up and downs galore. Fortunately I was so busy preparing for the day that my mind was as preoccupied as possible. Never a moment without that joy and sadness, but busy.
But how precious to be celebrating this day with loved ones, and looking at this little guy who had no choice but to arrive far too soon! 12 weeks too soon! What strength, determinination, will, love he held! He teaches me those every day!
To remember this little peanut of a baby in his isolette so tiny and so frail, yet the talk of the nurses in NICU with how strong and wiggly he always was...it's hard to forget those days.
As we sang Happy Birthday to Evan I got through the first line and couldn't sing anymore. Not because I didn't feel joy...but because I felt SO MUCH joy. And...a whole lot of sorrow missing the reality that Zac will never be in birthday pictures the way we dreamed.
The events of Saturday really hit me yesterday and I spent the good part of the day wheepy and broken.
I want this year to be a new year filled with some resemblance of renewed hope for the future. Hope for what remains a desire in our hearts. I don't want to live in fear any more.
The sadness of missing Zac will NEVER go away, but the joy of Evan is helping me heal more and more.
I was touched by a special gift included for Zac from a dear friend of mine on Saturday. It meant the world to me to have you do this...to remember with me, and to show me that you remember too :) You are an amazing person...and although I wish our meeting had not been through NICU and the fight for our childrens lives...I am glad we have been brought together all the same! You hold a very special place in my heart!
Evan didn't have much of a nap Saturday so he was running on pure adrenalin! He just didn't slow down! But the excitement of family and his cousins, and his future wife (hee hee hee)...how could he expect to sleep through any of that! I fear he has inherited his mothers issue with not wanting to miss out on anything by having a nap!!
The day was precious. The day was a day of remembering both my boys. The day was one of celebrating Evan and his life, and feeling greatful for the honor of being mommy to both Evan and Zac. It truly is an honor, and one that I feel blessed by!