Finally…a name

I finally have a name for the monster that took my baby from me. Gliosarcoma. A short name for such a destructive, menacing beast. The average age of onset is 53 years. It usually strikes middle-aged males. Only 8% of all brain tumors are in the “glioma” family, and only 2.1% of that group are gliosarcomas. Very rare. Very deadly.  So how did this cancer find my baby? According to the statistics, we’d have a better chance of winning the lottery.

Oddly enough, having this information brings me some peace. For the past couple of weeks, I’ve once again been bothered by the thought that we gave up too soon. I watched the movie My Sister’s Keeper. That mother would stop at nothing to keep her daughter alive. Should I have been like that? In my heart, I have known that Brandon and I made the right choice. But my head keeps tormenting me. When I was finally able to see in black and white what had happened to Ian, when I could read what the doctors wrote about his diagnosis and prognosis, it finally hit me – our sweet boy had absolutely no chance. And rather than enduring more surgery and possibly terrible pain, allowing his little body to be battered more and more only to delay the inevitable…rather than letting him pass away surrounded by doctors and strangers during yet another medical procedure, our choice allowed Ian to pass away peacefully. Quietly. In the arms of his mommy and daddy, surrounded by love. No doctors or nurses in the room – just the two people who love him the most. And I know that we made the most compassionate and unselfish choice we could have made.

I feel stronger knowing that we did right by our son. I feel closer and closer to accepting the way life is now and moving forward. I guess knowledge truly is power.

Giving Thanks

Me and Brandon last Thanksgiving - we had just found out we were pregnant.

Thanksgiving again. I can’t help but think about last Thanksgiving. I had just found out the week before that I was pregnant. Brandon and I were so thrilled. When we went around the table saying what we were thankful for, I remember Brandon got teary-eyed as he talked about how thankful he was for his new family – and how excited and blessed he felt about the new family member on the way. We were happy and thrilled about our future…with no clue what was in store for us in the coming months. In some ways, I miss that naiveté. I miss thinking that tragedy happens to other people. I miss the ability to just assume that healthy pregnancies and children just happen for me.

So now I sit here and try to reflect on the last year. I know that this kind of personal inventory is usually reserved for the New Year celebration. But, for whatever reason, Thanksgiving has me thinking about the things I’m thankful – and not so thankful – for. It’s still amazing to me that, in the space of one year, we could experience heights of profound, thrilling happiness – our pregnancy, our wedding, Ian’s birth – and also the deepest, darkest grief and despair. The extremes are, at times, dizzying…and disorienting enough to make me feel like I’m losing my footing.

So…what am I thankful for? I am thankful for my two beautiful children I have with me here on Earth. They are both turning into the most amazing people. Lexie is smart and independent and beautiful. She has her own mind, her own opinions, her own ideas about the world. She’s what my grandma would have called “spunky.” And Garrett…he’s one of the kindest, sweetest little boys I’ve ever known – yet still manages to be “all boy.” He loves baseball and football and video games and reading. He’s laid back and easy to be around. And then there’s my husband…someone who loves me and admires me for everything I am. All of the things that other people find annoying – my bossiness, my assertiveness, my odd sense of humor, my independence, my periodic vulnerability and neediness – those are all things my husband loves about me. He is one of the most amazing men I’ve ever know, and he makes me feel absolutely cherished. I don’t know what I’d do without his strength and love.

I’m thankful for my family…my mom and dad and sister. They’ve experienced everything right beside me – the joy and the pain – and they are still here. My family has always been a safety net that I know will be there for me when life knocks me down.

I’ve realized through this year what absolutely amazing friends I have. Friends who were there to celebrate our wedding and Ian’s birth…and were just as steadfast when Ian died. They somehow know just what I need when I need it…lunch with “the girls”, gossiping and laughing…a good cry with my friends…talking about Ian and what I miss about him…a good racquetball or softball game to distract me. And they know when I need to talk about the future and bounce ideas and feelings off of them. I’m so thankful for my small, close-knit group of friends.

As I sit here and think about the good things in my life, I realize that this list could get very long…I’m a fortunate woman in so many ways. It’s difficult to not let our loss overshadow all of these beautiful things in my life. I have tried to make peace with Ian’s death by resolving to let him live through me. By vowing to honor him through doing good things and being the best person I can be. Part of that is appreciating the beauty in my life. So for all of the things I mentioned – and so much more – I feel blessed and thankful.

One Step Back

I thought I was strong. I thought I was doing pretty well. Maybe my confidence has been bolstered by all the “you’re such a strong person” comments I’ve been hearing lately (more about that later). I found out today that I’m not as strong as I thought. I had made a comment to Brandon a few days ago that I thought I was almost ready to pack up Ian’s room. But today I was at my parents’ house – where we lived until just after Ian died – and I went into his room. I sat in the recliner and looked around…the little baseball and bat decals still on the walls…the blankets on the crib still turned back like he’s going to be there tonight…the changing table still stocked with diapers and wipes. And Ian’s smell is still there – the hamper is full of his dirty clothes that I haven’t had the heart to wash. His blue pajamas – the ones with the little football on them – are still rolled up in the diaper bag. They were the last clothes he ever wore. I took them out of the diaper bag and held them to my face. I could still smell him. The keepsake scrapbook page the PICU nurses made the morning Ian passed – on it is his foot and hand prints and some of his hair – lies on the changing table where he should be. And the tears came like someone had opened the floodgates. I stood up and touched all the sweet little baby things that were still waiting for our son…all the soft blankets he never got to use…the adorable clothes that were so lovingly picked out for him…the precious little ball caps that were still too big but we put on him anyway. I felt an aching and longing that I can’t possibly describe. I cried so hard and so long that the front of my shirt was wet. So I guess I’m not so strong, after all.

Which leads me to an observation I made this week. Throughout this journey – and there’s no better way to describe grief than as a journey – I’ve noticed some of the things people say when they don’t know what to say. Some inappropriate. Some insensitive. Some just downright stupid. I’ve joked that I was going to write a book of what not to say to a grieving parent. I’m sure such a book already exists. And I realize that most people have nothing but good intentions, so I never say anything about how their comments make me feel. But the one I’ve been hearing a lot lately is, “You’re so strong. I couldn’t handle it if my child died.” And it always makes me wonder…does anyone ever actually think, “Oh, you know, it would suck…but if my kid died, I could handle it.” I’m sure that I have read about some tragedy in the newspaper – someone’s child drowning in the family pool, or dying in a car accident – and I’ve thought, “Wow…I don’t know what I’d do…I couldn’t handle that.” But, you know what? We have no choice. We must handle it. I suppose the only difference is in how a person handles this short straw that we’ve drawn. And I’m not sure it has anything to do with strength. It’s just survival.

There are lots of ways to handle grief. Some people ignore it – they bury it and don’t talk about it. Some people dive back into their lives so they keep busy and have no “down” time. They may grieve privately – they may not take time to grieve at all. Some people – like me – talk about their grief with anyone who will listen. Even suicide is way to “handle” grief. (Not a good way to handle it, but a way nonetheless. And I’m pretty sure that it’s something most bereaved parents have thought about, even briefly.) So, no, I’m not strong…not any stronger than any other parent who has lost their child. All any of us are doing is trying to figure out a way to move forward when our lives and our hearts have been shattered.

It seems it’s true that this path – this journey through grief – is crooked and is never just one step after another. It’s two steps forward, one step back, and so on. So today was one step back for me. The depth of the sorrow that hit me today slammed me back a little bit. But I picked myself up and took a deep breath – and hopefully the coming days will allow me to take two steps forward.

The Selfishness of Grief

I had my hair done yesterday…I hadn’t had a haircut and highlights since before Ian was born. I had been putting it off because 1) the last time I had my hair done was one week before Ian was born and I didn’t want to explain to my hair dresser what had happened and 2) I haven’t really cared what I looked like. (As it turns out, my hair gal has been in frequent contact with my sister, so she already knew what had happened.) So, anyway, I was sitting there getting foil put in my hair when my gal asked me how my family – the people outside my husband and children – were handling everything. And it occurred to me that I don’t know. Then I went to get my eyebrows waxed for the first time in months. The girl who was waxing my eyebrows knows my mom. She asked how my mom was doing. Again, it occurred to me that I don’t know. I talk to my mom a few times a week. I talk to my dad just as much. I talk to my sister once a week or so. This is my family – the people with whom I’m closest – and I don’t know how they are handling their grief. How selfish is that?

For the rest of the afternoon, it bothered me. I thought about a recent conversation I had with my sister, during which I realized that she is having more difficulty dealing with Ian’s death than I thought. I remembered how it struck me that I should be checking on her more often – maybe sharing what I’m doing to try to heal. I felt guilty that I could be such an uncaring  and selfish sister and daughter. I’ve been so wrapped up in my own experience – pouring over every book on grief that I could get my hands on, talking about my feelings to anyone who would listen, drowning in my own sorrow at times – that I haven’t noticed how the people I love (outside my husband and children) are doing. I’ve been so preoccupied with my own loss and just trying to survive that I haven’t come out of my cave long enough to see how the rest of the world is doing.

After pondering this for hours, I realized that I can’t worry about everyone else. This is one time in my life that I’m giving myself permission to be completely self-centered. In many ways it seems like grief is similar to the “parallel play” of toddlerhood. You experience it side-by-side - you know the other person is there, and you take comfort in that - but there isn’t a lot of exchange involved. The same event – Ian’s death – started all of us on this journey. But we each have our own feelings and experience the whole thing differently. Grief is a very personal journey and there is no other way to take the journey but with yourself at the center. There is no other way  to grieve but selfishly.

I’ve been told it was selfish of me to start this blog. It was selfish of me to put something that effected our whole family and is so painful and private “out there for the world to see.” I feel bad about that. I feel deeply sorry that I may have caused someone in my family pain or embarrassment in my effort to work through my grief. But, in this case, at this point in time, it truly is all about me. And that’s okay for now.

Milestones

I’m not sure why, but I feel compelled to write. To somehow signify this day. It seems appropriate that today is the beginning of The Day of the Dead celebrations - El Dia de los Muertos. The day many Hispanic cultures happily and lovingly remember relatives who have passed on. Today seems like a sort of milestone to me. Today is eight weeks since Ian left our world. Almost to the hour, actually. He has been gone for as long as he was here. Sixteen weeks ago life seemed perfect. Eight weeks ago I wanted my life to end. And now here I am…slowly making my way from one end of that spectrum and trying to settle somewhere in the middle. How can everything change so much in such a short amount of time? If life had gone as planned, I’d barely be returning to work from maternity leave. The speed with which my world has been altered is dizzying.

This is the last picture I ever took of Ian...it was his 8-week birthday that day - the day he got sick.

I don’t have any observations or specific thoughts to share today. I just somehow wanted to acknowledge this eight-week milestone. It seems significant to me, but I’m not sure why. Perhaps because Ian’s life was so incredibly and unfairly cut short. Eight weeks is such a small drop in the bucket of time…but it seems to have been long enough for him to leave an indelible mark. It was long enough for him to make  profound changes in his mommy and daddy. He wasn’t here long enough to make an impact on anyone outside of our family. But because of him, the people who love him are trying to have an impact on our part of the world. That’s the only way that I can keep my sanity - by letting him live through me. Three weeks after Ian died, I remember coming across a quote and thinking it was so beautiful. I wrote it in my journal at the time. It said:

“As long as I can I will look at this world for both of us.  As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us.”

My sweet angel, I mourn that you will never share the beauty of the world with us…but I’m so thankful that you felt our absolute love for eight weeks. Love, Mommy.

A New Eyeglass Prescription

If you wear prescription eyeglasses or contact lenses, you have probably had this experience: you didn’t think anything was wrong with your vision. It hadn’t changed since your last check-up. But the doctor found a slight difference and adjusted your prescription accordingly. When you walked out of the office, you couldn’t believe the change! The leaves on the trees were more defined. The colors in the flowers were more vibrant. Everything was more intense. It was both breathtakingly brilliant and painfully bright at the same time. That is how I described my world to my grief counselor two nights ago. Extreme – like every nerve ending is exposed and I’m at the mercy of whatever element rears its head. I am finding happiness in things I have taken for granted for so long – chopping vegetables with my daughter while we sing and dance around the kitchen. There was a time when those feelings of contentment and joy were so common that I didn’t realize that it was contentment and joy. And then the other extreme. Sadness where it doesn’t belong – going to my son’s baseball games. We spent four days a week last spring immersed in baseball. I was pregnant…we were excited and happy. We had so many conversations and dreams about the hours we’d spend at that same ballpark with Ian. Dreams of him watching his big brother play ball, and then learning to play ball himself. And it just feels so sad…so wrong…to be there without him. I imagine that eventually I’ll get used to this “new prescription” and the intensity will lessen somewhat. I look forward to that - I look forward to just moving through life without being thrown into darkness by some seemingly insignificant event. But I also hope I never lose the sharpness of focus – the ability to really feel and see the world around me – that has been a part of my life since Ian died.

Our kids, Garrett and Lexie

I have also begun to come to terms with that label – the bereaved mother – that I am so afraid will define the rest of my life. I received an email from a friend – a very smart one, obviously – that likened my life to an old-fashioned suitcase…one with stickers on it from everywhere it has been. She said that the “bereaved mother” label will always be there…but so will the labels of “devoted daughter,” “loving wife,” “cherished friend,” and about “a million others based on the lives you have touched…” She went on to say that the bereaved mother label won’t always be the largest, stickiest one. I’m not sure how I feel about being compared to an old, beatup suitcase…but what she said made sense.

So, today I’m on the upswing again. I’m moving forward again, focusing on healing my grief and reaching our goals as a family. Brandon and I are on the same page – experiencing our grief differently, but together as a mother and father – and still determined to come out of this experience stronger than we went in. We are still working toward expanding our family with another beautiful baby…and making sure that the family that baby comes into is whole and happy and full of love and acceptance.

I’m Drowning

I haven’t written for awhile. I wanted the “tone” of this blog to be upbeat and positive…but very little about the past week has been upbeat or positive for me. This blog – the way I saw it when I started it – was supposed to be inspiring (for myself if for no one else). It was supposed to be a journey through my healing and the road back to happiness. So, I’ve avoided writing. But this morning as I was, once again, contemplating my misery, I decided that this, too, is part of our journey. The bone-crushing sadness that I’ve been waking up to every morning is part of the path, right? Right? I know that I am teetering on the edge of depression. I’m doing what I can to stay away from that darkness. I was listening to Sarah McLachlan yesterday – which is, in itself, a sign of depression – and one of her songs desribed my feelings beautifully:

I feel just like I’m sinking
And I claw for solid ground
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go

So how do I get out of this? How do I begin to move forward again? I had some momentum going when I started this blog. I had some hope. I could see a future that included happiness. Today – right this minute – all I see is the gaping void of the rest of my life. And all I keep thinking is this isn’t me. I’ve had a fairly happy life…I’ve never considered myself one of those constantly-down-on-my-luck kind of people. I’ve been a lot of places, done a lot of cool things, I have a beautiful, loving family. I have a decent, stable job. I’ve always managed to be a “half-full” kind of gal, even when things didn’t look all that wonderful. Which is why it is killing me to feel so sad. I’ve never really grasped the true meaning of “sadness” before. I was sad when my old dog died. I was sad when my mom had breast cancer. I was sad when my Granny died. But those things were nothing – nothing – compared to this heaviness of the soul that I feel now. And I don’t know what to do about it.

One of the things I’ve been struggling through this week is that this label – “the bereaved mother” – is a label I will have for the rest of my life. No matter what else I do, or what future happiness I have, that label – that lifetime membership to the horrible club no one wants to be a part of – will always be there. Even if Brandon and I somehow come up with the money for the tubal reversal surgery and, by the Grace of God, have another baby…I will always be a mother who has lost her child. And it just. makes. me. sad.

We are seeing our counselor tonight. I hope that tomorrow will be a better day. I hope I can come back on here tomorrow and blog about something enlightening or positive. I hope I’ll have some quirky observation about life to share with all six people who are reading this. I hope…because that’s all I can really do at this point.

Have a nice day? Yes! Have a nice day!

Brandon and me on our honeymoon.

Since the day after Ian passed away, I have been writing in a journal every day. Sometimes I go back and read…it feels good to think about our son, and it helps me to see that I’m moving forward. Today I was reading a journal entry from ten days after Ian died:

“For whatever reason, I’m not having a good morning. It got me to thinking about how yesterday was okay until bed time. I went through the day – went through the motions. And I realized how much of our days we spend on auto pilot. You function…go to the store, get gas, do whatever you need to do. And we exchange banal pleasantries with strangers we come into contact with. But do we really give a crap how someone is doing? Do we really care if they have a nice day? A couple of times it kind of shocked me when someone would ask, “How are you today?” Well, how the hell do you think I am? My baby just died. I feel like dying myself. If I didn’t have two other kids and a husband and a family that loves me, I’d probably just off myself. I’m so hurt and angry and shattered that I can’t really believe I’m functioning. But, you know, other than that, things are great. Thanks for asking. Ugh. I don’t want to be this sarcastic, angry, wounded person. But, right now, that’s all I can be. I hope the rest of the day goes better.”

Reading this now – today – I feel so differently. And I realize how far I’ve come in six weeks. I realize that I really do care how people are doing. That phrase – how are you doing? – has such a different meaning to me now. It’s no longer some small-minded chit-chat with the clerk at the grocery store. It’s not just a greeting. I want to know how people are doing – and I really, truly wish them well. I wish I could tell every person I meet  – the convenience store clerk, the secretary at our son’s school, my daughter’s friends – to cherish the good things in their lives, and don’t dwell on the little things that are nothing more than irritants. Embrace the things that make you happy – your family, your friends, music, sports. Embrace the here and now. Because nothing about your future is guaranteed. Plan for it, dream about it, lay the foundation…but today and how you live now are the only things you really have control over.

I’m so determined to learn something from what we are all going through…I can’t let it break me. I can’t allow myself to drown in sorrow and self-pity. Not that I don’t have hard days. We all definately do. Brandon and I call it the “roller coaster of grief.” Anticipation as you slowly, slowly climb upward…then a drop so fast your stomach seems to slam to the floor. But I’m learning to really cherish the good days. And I’m learning that I care so much about what happens to people…and I’m finding that when I tell that sweet lady that works at the drive-thru window – so cheerfully telling me good morning when I stop there for my morning diet-coke fix – to have a nice day…well, I truly mean it. I guess I’m making progress.

Wearing My Heart on My Sleeve

Well, here I sit…I can hardly believe that last night I made the leap. I started a blog. I put my heart and soul out there for the world to see. I’m left feeling vulnerable…vulnerable to criticism, vulnerable to judgment…but, mostly, vulnerable to disappointment. Now that I’ve made the leap – I’ve opened up my life for the world to see – I actually have some hope. And it is terrifying. I realize in a way that I never could have before that allowing yourself to have hopes and dreams – and sharing those with others – is the ultimate vulnerability. But everything in life that makes it worth living…happiness, success, love…require that a risk be taken.

Knowing that we have taken another step toward fulfilling our dream of being blessed with another baby - even though this step has left me feeling exposed and raw – has given me a glipse into a future that includes hope and happiness. For the first time in six weeks I don’t dread tomorrow. I am starting to believe we will get through the next hour, the next day, the next week, the next month…and we’ll do it together, with love and hope in our hearts.

What This Blog Is About

Me, Brandon and our oldest son camping in San Diego when I was six months pregnant.

My name is Tricia. My husband’s name is Brandon. We met two years ago and knew we were meant to be together. A little over a year ago we knew that we would be married, and desperately wanted to have a child together. He already had a daughter from a previous relationship. I had two children from previous relationships. But our love – the deep connection we felt from the start – was a new experience for both of us. Neither of us had been married before. Neither of us had actually planned a child before. So both of those were firsts for the two of us. We were excited about our future together.

We planned to be married in the Spring of 2009. We figured it would take awhile to get pregnant because of my age (I was 40 at the time). But…SURPRISE! I got pregnant the first month we tried. We upped our wedding date to February 2009, when I was 16 weeks pregnant. We found out just before our wedding that we were having a boy! We soon settled into marriage and pregnancy. We spent the spring planning for our baby’s arrival, picking out nursery decorations, buying adorable little clothes. It was so exciting! We had this precious baby growing, moving, kicking inside me…we talked about our dreams for him, our hopes for the future. We pondered who he would look like. I hoped he’d have Brandon’s beautiful mouth and adorable ears. He wanted him to have my blue eyes.

Our gorgeous little boy, Ian Thomas, was born on July 9th, 2009. He was four weeks early. He weighed 6 lbs 12 oz and was 19 inches long. We were both surprised at how small he was. But, oh, was he beautiful! A head full of dark hair, and bright blue eyes! He spent the first 24 hours in NICU because he had fluid in his lungs due to being born c-section. I had not had a c-section before, and it ended up being totally unnecessary. The doctor was sure the baby was huge (my last child was very large). He was wrong. In retrospect, I think the doctor just wanted to schedule the birth for his own convenience.

During my pregnancy, Brandon and I discussed sterilization. We were sure we didn’t want any more children because of my age. We thought we were being responsible. I was hesitant and told the doctor that if I had a c-section I suppose we could do it then. If not, I’d wait a few months. So, because of the c-section I had my tubes tied the day our sweet baby was born. I almost instantly regretted it…I cried about it the next day. I’m not sure if it was a premonition or hormones responsible for my reaction. But, either way, I have ended up having good reason to regret the decision.

Back to our sweet boy…we went home together three days after he was born. He was perfect! He was a content baby and rarely cried. He nursed well…and oh, how I loved nursing him. I didn’t even mind getting up in the middle of the night because I loved holding him close. As the weeks went by, Ian’s personality began to emerge. He was quiet and content…sat in his swing and just watched everything going on around him. When he was hungry, he didn’t cry…he grunted at us. If we didn’t respond quickly enough, his grunting got more insistent. It was adorable. His happy disposition and sweet little spirit won over everyone who met him. Both sets of grandparents, and his older sisters and brother fell madly, deeply, crazy in love with him. Brandon and I were so happy and spent as much time with Ian as possible. We talked about his future often…Brandon is a baseball fanatic and was sure Ian would be a great pitcher. I was already planning the purchase of his first dirt bike. Either way we were positive that our beautiful boy was going to set the world on fire!

On September 3rd, 2009 I woke up and saw that Ian had thrown up early that morning. Thinking he was sick, I cleaned up and held him. He threw up one more time that morning. I called the doctor, who said to feed him again and bring him in if he didn’t keep it down. He kept it down, but acted like he didn’t feel well all day. I thought he had the flu. As the day turned into evening, Ian began getting progressively more lethargic. He began to have a funny look in his eyes…like he wasn’t quite there. As Brandon and I discussed whether or not to take him to the doctor, I began rubbing his sweet little head – as I often did. It was then that I noticed that his fontanelle (soft spot) was firm. I don’t know if it was instinct or what…but Brandon and I looked at each other and immediately knew we needed to go to urgent care. That’s where our nightmare began.

The doctor at urgent care didn’t seem alarmed at first. But when I pointed out the firmness on his head, he recommended we take the baby to the hospital. I’m not sure when it became urgent, but the next thing I knew, there was an ambulance there. I remember hearing something about an “altered state of consciousness.” I rode in the ambulance, but I wasn’t allowed to ride in the back with Ian. A block away from urgent care, I heard Ian crying and someone told the driver to use the lights and siren. I was scared to death. I could hear my baby crying and I couldn’t do anything about it. But by the time we got to the hospital, he had stopped crying and was sleeping soundly in his car seat. Once at the hospital, Ian woke up again. He started crying again, and I remember one of the paramedics trying to reassure me, saying that “crying is a good thing.” All I wanted to do was pick him up and hold him and soothe him. The doctor said Ian’s breathing was a little irregular, and they intubated him. It still hadn’t dawned on me that there was more wrong than some illness that they could fix. I still thought we would be going home that night. I was wrong. So wrong. They did a CT Scan. The doctor came out of the room and told us that the image showed a large mass on Ian’s brain. They didn’t know what it was – whether it was fluid or a tumor or what. But they were going to admit Ian, give him a room in Pediatric ICU and do an MRI. I think I screamed – I’m not sure. I know I started crying hysterically. My knees went weak and Brandon had to hold me up. Up until that point, I had never been so scared in my life. As we waited in the Pediatric ER, I sat next to Ian’s bed talking to him and telling him how much I love him and stroking his beautiful little face.

Ian was put into a room by about 3 a.m. His vital signs were good and he was medicated and sleeping. The nurses were wonderful. He was hooked up to machines, but they moved things around and I was allowed to hold him. He was wrapped in a blanket and, other than the tube coming out of his mouth, he just looked like he was sleeping. I was still hopeful everything would be okay and that the doctors would find a way to heal my baby. I sat there holding him and talking to him, telling him how much we love him. How much he was wanted and planned for and loved. I told him that Mommy and Daddy were there, and we’d never leave his side.

The MRI was done that morning. It showed that  our baby’s brain had been overtaken by a tumor. The mass on the screen took up about 2/3 of Ian’s brain. The doctor didn’t know if the mass was benign or malignant. He said that he didn’t believe he could remove the whole thing in one surgery, because it would take too long and he didn’t know what he’d find once he got in. He said that a baby Ian’s size could only stand about 1 ½ – 2 hours of surgery. But he told us that the surgery was very serious, and there was about a 40% chance that Ian wouldn’t make it through surgery.  He went through all the possibilities. The tumor could be benign or malignant. There could be chemotherapy. There would definitely be more surgeries if he survived this one. And, if he survived the next few days and any further surgeries, the extent of the brain damage would not be known until Ian began to grow. He could be mildly disabled, or he could be a vegetable. As I sat there listening to the doctor, my whole body went numb. Shock doesn’t begin to describe what I felt. I sat there shaking in Brandon’s arms while the doctor thoroughly explained the risks, and had us sign permission forms for surgery and blood transfusions.

We were allowed to escort Ian all the way to the operating room. Brandon and I kissed our sweet baby and told him we love him. Then they wheeled him away. The next few hours were a blur. We didn’t know what the outcome would be. We prayed and prayed. There were people praying all over the country for our sweet baby. Three hours later, Ian came out of surgery. The doctor said that he was a strong baby – he was doing so well, they kept going to get as much of the tumor out as possible. He said he removed about 50-75% of it, and they sent it to pathology to determine what kind of tumor it was. Unfortunately, the tumor had already grown tentacles into Ian’s brain. Ian had to have blood transfusions – enough to replace his blood volume twice. His body was going to have a hard time adjusting to the blood. The doctor said that later that afternoon they would do another CT scan to see how things looked.

When we were allowed into Ian’s room, we were warned about what he would look like. I still wasn’t prepared. The whole right side of his head was swollen so that his little ear stuck out. His right eye was swollen. The sutures on the side of his precious little head looked angry and mean. He had tubes and wires everywhere. He looked so little lying in that bed. We sat and talked to him, stroking his legs and telling him we love him.

The afternoon went by in a blur. We hadn’t slept for almost 48 hours. That afternoon at about 5:00 p.m. Ian’s heart stopped. The doctors were able to revive him, but had to give him a medication to help his heart continue beating. A sense of dread began to wash over me. It was finally sinking in that my beautiful baby was probably not going to live. I was not prepared for what Ian would look like as the day went on. The swelling had increased so that his head was huge. His little ears stuck straight out due to the swelling. Both eyes were puffy. The only thing that looked like him was his little nose and sweet mouth. His body was swollen, too.

We met with the doctor to see the latest CT scan. The space left by the removal of the tumor was filling rapidly with blood. The blood was not coagulating, so Ian was bleeding into his stomach. The blood in his head was continuing to put pressure on Ian’s brain. Massive brain damage was almost guaranteed. Brandon and I went back to Ian’s room and spent the evening talking to him and touching him. We told him how much we love him and how precious he is. We told him how much we wanted him, and how we had planned him. We cried together. We slowly realized that our little boy was dying. He was being kept alive by a respirator and medications that kept his heart beating. Throughout the evening, we questioned every doctor that came in the room. What would you do if this was your baby? Is there even the most remote chance of a miracle? When a neurosurgeon came to talk to us at about 9:30 p.m. we got the worst news ever. The pathology report had come back. The tumor was “very fast-growing, and highly malignant.” Even as we sat there, the ugly tumor was continuing to grow in our baby’s head. Our beautiful boy had already suffered major brain damage. He would never recover.

Our angel at seven weeks old.

 I felt like I had hit by a train. How could an evil, ugly monster like that be growing in our perfect baby’s head? How could something so beautiful have something so hideous inside his head? Why was this happening? We had done everything right. We fell in love, we planned this little angel, we were so happy and felt so blessed to have him. We got married. We were so excited to raise a child together – a child with a mom and a dad. A child whose parents wanted him so much. Had we done something to deserve this? Did I do something when I was pregnant that caused this? Guilt and anger and anguish. And through it all, the only thing I wanted to do was hold my baby boy and protect him and kiss him. All a mother wants to do is keep her kids from harm. But I couldn’t help him. I felt like a failure.

 Brandon and I decided that night to have the machines and medications turned off the next morning. We would spend one last night with our sweet baby Ian. Our family could come say good bye. That night we each slept for just a few minutes at a time. We shared a recliner in Ian’s room. Every time I slept, I dreamt about Ian. He was smiling. He was happy. I was nursing him. And then I’d wake up to the nightmare. Could this possibly be real? Every time my milk came in during the night, I cried. It was his feeding time. But he would never nurse again. The grief was indescribable. My breasts were engorged with Ian’s nourishment. I ended up pumping the milk, then couldn’t throw it away. It was Ian’s. My body made it just for him, and I couldn’t bear the thought of throwing away anything that was his. I kept getting up and standing by his bedside, talking to him. Telling him how I love him. How I will always love him. Stroking his face and kissing whatever body part I could reach. Stroking his precious hands, rubbing his chubby little thighs. Gently caressing that adorable head and face.

 Morning finally came. One by one, those that love Ian came in to tell him goodbye. Our oldest daughter, Lexie, stayed in the room for a long time. It was unbearable watching my oldest baby grieve and say goodbye to my youngest – her sweet baby brother. Our only other son cried and talked about the things he had wanted to do with Ian. He wanted to play catch with him and teach him baseball. Brandon’s father came in and said goodbye…he cried and prayed. Ian was his only grandchild that lived close – right next door. My parents came in and kissed their youngest grandchild goodbye.

At around 9:30, the doctors came in and disconnected all the tubes and wires that were keeping our sweet boy alive. He was given morphine to make sure he didn’t feel anything. He was wrapped in a blanket and handed to us. I sat in a rocking chair facing Brandon. He sat on the edge of the recliner. Together we held our baby. The little miracle that we made together – the product of our love and our hopes for the future. We put our heads together with his and whispered how much we love him. That it was okay to let go. That we would always love him and would never forget him. We kissed him and stroked him. I kept kissing his perfect little mouth, remembering how he’d smile in his sleep when I kissed his mouth. Soon, he stopped breathing. After a few minutes, his strong little heart stopped beating. I remembered that it was just eight short weeks ago that the three of us were alone in another hospital room, in a different hospital. It was just the three of us when Ian came into the world. And it was just the three of us together again when our hearts were shattered and our sweet angel left us.

 We sat with Ian for a few minutes after that. I looked at my sweet, precious baby for the last time. We went into the waiting room to let our families know that Ian had passed. I felt a pain so intense I thought I would die. I wanted to die. As we were leaving the waiting room, a nurse came out and gave me the blankets Ian was wrapped in when he passed. I was overwhelmed with grief. My knees buckled. I’ve never cried so hard or felt so much pain.

Our little slugger at his first Angels game.

That was six weeks ago. Since that time I have felt every emotion, every pain, every desperate thought a mother could feel. Brandon and I and our children are mourning our little Ian the only way we know how…crying together, talking about him, writing about him. No one writes a manual on how to grieve for your child. I have kept a journal, writing in it every day for the past six weeks. When I’m ready to share it, perhaps I will post it in this blog. I have discovered things about myself that I never knew. I have a strength I didn’t know I had…and I have a dark side I didn’t know was there.

Now…the reason for this blog. After hours of discussion and soul-searching and gut-wrenching questions Brandon and I have come to the conclusion that the only way we will ever feel almost whole again – like we are a complete family – is to have another child. We have discussed this with our grief counselor, our families, our children…and we all believe that having another baby is the right decision. Our dream is to have a child together. We are wonderful, loving parents…our older children are happy, healthy, loving kids. None of us desire to attempt to “replace” Ian. That couldn’t happen. He was perfect and beautiful and is absolutely irreplacable. He has a part of our hearts that will never be touched by anyone else. But we have so much love to give another child…and sharing that love – sharing it with Ian’s little brother or sister – is something that we believe will help our families heal. Which takes us back to that fateful decision to have my tubes tied.

I have done a lot of research, both on the internet and through discussions with doctors. I believe the right course of action for me is to have a tubal reversal surgery. Obviously, insurance does not pay for this procedure. Brandon and I are scrimping and saving to pay for the surgery…but time is of the essence. Because of my age, my fertility is rapidly declining. We only have a small window during which we will be able to have the surgery and, hopefully, get pregnant. Brandon and I have started a savings account just for this purpose, and are hoping to have enough money for the surgery by February 2010 – our first anniversary. The cost of the surgery is about $6000. We have about $800 saved so far.

So, if any of you are touched by our story – if you would like to be a part of something that would absolutely change the lives of so many people – please help us pay for the surgery. Any amount is appreciated. As we head down this road, I plan to blog about the experience and share it with anyone who is interested or who has helped us along that path. Thank you from the bottom of my heart for taking the time to read our story. If you are a parent, please hug your children extra-tight every time you leave them. And remember how quickly life can change…never take any of your blessings for granted. Ian’s legacy to us will be just that…we realize how precious life is, how beautiful love is, and we all have a deeper appreciate for life and happiness than we ever thought possible.