A small revelation

About two weeks ago I was running on the treadmill, just letting my mind drift, when I had a small revelation. Well, at the time it might have seemed small, but since then it has made a huge impact on me and has shifted my thinking in the right direction.

Imagine the following situation:  A woman just found out that she is pregnant. She has wanted a baby for a very long time and is ecstatic when she gets the news. For the next nine months, she watches what she eats, exercises, gets plenty of sleep, and is full of happy anticipation. She would do anything for her unborn child, and it is not hard for her to lead a healthy lifestyle, knowing that’s what’s best for her baby. Though she cannot wait to hold her child, she would never throw in the towel because her pregnancy takes too long (ridiculous thought, right?).

You probably know where I am going with this, don't you? Translate this situation to a woman trying to lose weight. In my situation, it is realistic that I could reach my goal in 9 months, which started this whole pregnancy thinking.

Now if I was pregnant, I would immediately cut out all junk food, get plenty of fresh air and sleep, and drink lots of water….and it wouldn’t even be hard because I would be doing it for my baby. So why is it so hard to make healthy changes for ME? Why do I feel like I will NEVER (=9 months) reach my goal? Why is this such a struggle? And why do I do so well during the day and then binge in the evenings? Again, if I was pregnant, would I only take care of my body until 8 p.m., and after that I would eat and drink whatever I wanted? Of course not!

So, I need to learn that I am important, that I am worthy of changes and a healthy lifestyle. And I know that this is not only for 9 months…I need to find a lifestyle that is healthy and sustainable, so when the nine months are up, the weight will not come back to find me!

Reflections

Over the past few weeks, I have received a few compliments about my losing weight. Things like, "You look great" and "I am so glad you're doing better."

The last one made me think a lot. Am I doing better after losing Joana? Why is my outside not reflecting the deep pain I am feeling? Am I "betraying" Joana by taking care of my body and looking like I am doing great?

Then I thought back to February when I was in the hospital and had major surgery, and my body looked anything but great. It was okay for me to look awful, because my body was going through some rough stuff. My outside for once matched my inside. It was okay to burst into tears at the most random times and it was okay to not smile and act like everything was okay.

But since then I have come to realize that I have to take care of my body better, and I have done a pretty good job. Exercising, eating healthy (for the most part), trying to get enough sleep...which all resulted in the above mentioned compliments. While it is nice to hear compliments, a part of me feels like screaming, "But I still miss Joana just as much! Nothing has changed, my daughter is still gone!" Am I just overly sensitive and maybe others don't even connect those two? When I hear "You look great," do they not mean, "You look like you don't miss Joana as much any more?" Do they truly just mean that they can tell I have lost weight? Am I reading too much into everything?

Well, now I am back to being in the hospital, probably looking awful since I haven't taken a shower, am on pain meds, and don't feel the greatest. Yes, my outside matches my inside.....but I want nothing more than to go home and go back to taking care of my body! My treadmill is waiting for me, my new blender is ready to make some awesome smoothies, and my bed would like me to sleep in it again....

An innocent compliment....

"I don't know how you do it. If my daughter died, there is no way I could keep on going like you do."

A very innocent sentence which was probably meant as a compliment, but it stirred oh-so-many emotions in me.

First of all, I don't have a choice. I would have never chosen to lose my daughter. Never. Yet, my daughter died, and I was left behind. She was robbed of many, many years of living, and I feel like I have to live my life to honor her and preserve her memory. Is it easy? No, absolutely not. Would I change things if I could? Absolutely.

Second of all, if you tell someone who lost a loved one that you couldn't go on if you lost a loved one, it implies that you love your person more than the bereaved person loved his/her loved one, and that implication stings. A lot. If you couldn't go on if your daughter died, but I did and do every single day, that must mean that I didn't love my daughter as much as you love your daughter. This might be totally irrational and make no sense to you at all...I am just writing down how I felt in this particular situation today.

I know it's hard to talk to a bereaved parent because - let's face it - we are always on edge, take everything personal, have terrible mood swings, and never know how we will react in a given circumstance. What was okay one day might not be okay the next, and what was not bearable today might be okay tomorrow. But one thing never changes....we miss our children with every fiber of our being, with every breath we take and on each and every day we are alive.

Giving up is not an option. My daughter never did....so what would give me the right to? I will continue to honor Joana and share her beautiful spirit with everyone who is willing to listen!

October 3

October 3...such a tough day.

Two years ago, October 3 was the last full day I had with Joana. The last day on which the sun set while Joana was still alive. The last day I was able to hug and hold her as much as I wanted. The last day I could tell her how much I love her from morning to night.

On that day I took some pictures of the two of us, and those are some of the most treasured photos I ever took. I want to share them and show the world how very brave my daughter was, how beautiful she was up to the very end. I have often thought about showing others....but then I get scared. On the one hand I would love to share them, but on the other hand I want others to remember Joana the way she was before her brain tumor took over. To me, Joana was always beautiful, from her first breath to her last, inside and out.

Two years without holding her, without hearing her voice, without seeing the love for life in her eyes and hearing her excitement when she talks about college and her plans for the future. Two years of missing her, and just when I think I can't possibly miss her any more, something happens and my heart hurts all over and just a little more than before.

I journaled on CaringBridge about Joana's last week, and I am going to cut and paste it here - not because I want sympathy, but because I want others to understand what it was like, and why it is so very important to find a cure for cancer. Cancer took so much from us, and more importantly, it robbed Joana of an amazing life that I am sure she would have had. She was determined to make a difference in the world, and I know that she would have.

October 4....9 days after her birthday and 9 days before her boyfriend's birthday. Right in the middle and very Joana like. I miss her so much....

Joana's last week (as recorded on CaringBridge)

On Saturday, September 28th, 2013, we celebrated Joana’s 21st birthday. We knew for a fact that it would be Joana’s last birthday with us, and we also knew that she really didn’t understand any more what was going on. But we wanted to celebrate her special day (even though it was 3 days late) with all of her friends and give her friends a chance to say good bye to her.

In the morning, our hospice aide Deanna came over to get Joana ready. She washed her hair, cleaned her up, dressed her nicely, and then let her rest a couple of hours before her party.

We had arranged to meet everyone at a café where we had a room to ourselves. When it was time to get Joana up, she had no idea why she was supposed to get out of bed and therefore didn’t cooperate very much. I tried for more than half an hour, but Joana was still in bed when my friend Laura called and asked if we needed help. She came over, and we were finally able to get Joana up and into her wheelchair and then into the van. After a very short drive, we were greeted by many of Joana’s friends at the café. Joana seemed to enjoy herself while we were there, but as soon as we were in the car to go back home, she had already forgotten where we had been. She never opened any of her presents, and to this day they remain unopened in her bedroom.

The days after her party are a blur to me. Joana was still awake here and there, but she spent most of her days sleeping. She didn’t eat much at all, and we could only get her to drink a few sips occasionally. Hospice assured us that this was normal, and since her body was starting to shut down, it would actually harm her if she was force fed. By Wednesday, October 2, we knew that Joana didn’t have more than a week left and we called her closest friends and of course Adam, her boyfriend, who came to Saginaw right away.

Joana slept almost all the time, and when she tried to talk, we couldn’t make out what she was saying. Her words were slurred and her voice was very quiet. On that Wednesday, after not speaking coherently for a few days, she opened her eyes and said clear as can be, “Wow, that just sounded like Guy.” She sounded very surprised, but as soon as she said it, she closed her eyes again and drifted off. That was the last thing I heard her say that I could understand. There is a huge significance to those last words which I would like to explain. Guy was Joana’s friend who had passed away from a brain tumor a few years ago. When Joana was diagnosed, Guy was there for her and explained how he made it through. When Joana was nervous about radiation, Guy would say, “I made it through just fine, Joana, and so will you.” Unfortunately, Guy’s tumor returned with a vengeance and took Guy’s life in a few short months after recurrence. I remember going to the funeral home with Joana, thinking, “This could happen to us.” There were so many similarities between Joana and Guy, and, unfortunately, both of their young lives were cut short. So you see, for Joana to talk about hearing Guy when she physically wasn’t able to speak clearly any more is more than amazing…

Later that morning was the last time Joana got out of bed. She sat in her wheelchair for a few minutes and sipped on some juice, and I took a few pictures of the two of us. Someday I might share these pictures, but not yet. They are very special to me, but they show just how sick Joana really was, even though she smiled and in one picture gave me a “thumbs up”.

On Thursday, Joana slept pretty much all day. She didn’t eat or drink any more, and wasn’t really responsive. I had wonderful friends stay at our house who took care of all the logistics so I could spend all my time by Joana’s side. They made sure there was food in the house, that the phone was answered, that there weren’t too many visitors at any one time, and the list goes on and on! I will be forever grateful that they were here and didn’t run when things got tough!

Thursday night, Adam stayed at our house and slept in the basement while I slept next to Joana. I had to push her morphine pump numerous times for additional doses (she received continuous morphine around the clock, but we were able to give her extra if she needed it) since she was in so much pain, and we had to call the hospice nurse twice during the night to come to the house because once the pump ran out of medicine and once because Joana’s heart rate was extremely high.

Friday morning started “normal.” Our hospice nurse, Elizabeth, came to evaluate Joana and to give her her meds through her picc line.  I showed her two Youtube videos of Joana (her speech at Relay For Life and the video for her youth group) because it was very important to me that she got to know Joana and hear her voice. Afterwards she examined Joana and then she took me in the dining room to tell me that she saw signs that Joana would pass away soon, probably over the weekend. I asked her if we should take Joana to the hospital, but Elizabeth said that Joana wouldn’t survive being transported in an ambulance. She then left to see another patient and told us she would be back in the afternoon to check on Joana.

Adam went home for a little bit to take a shower and get clean clothes. He was undecided if he should go, but I encouraged him because I thought once he came back, he would stay till Joana’s death and I thought it would be good for him to take a little break. I remember saying, “Nothing will happen in the next hour or the hospice nurse wouldn’t have left. It’ll be fine if you go home for a bit.”
Chris and I sat on the couch next to Joana's hospital bed and discussed if we should take David and Anya to their grandparent’s house for the weekend, or if it would be better for them if they stayed home. We never came to a conclusion, and Chris decided to take a quick shower while the hospice aide gave Joana a sponge bath. Deanna just started showing me how I would have to start turning Joana so she wouldn’t get bedsores when we noticed a change in Joana’s breathing. I remember looking at Deanna and she gave me a nod, confirming that the time had come…much quicker than any of us could have imagined. My friend Laura rushed to get Chris, and I held Joana, stroked her hair and her face, kissed her, and repeated over and over how much I loved her and that it was okay for her to stop fighting. She stopped breathing multiple times, but every time I thought she had passed away, she would gasp for air again. This seemed to last forever, but I believe it was only 10 or 15 minutes. At 11:48 a.m. on Friday, October 4, 2013, Joana took her very last breath. She never seemed scared.

I held her for a while longer, then I went to tell Tim, who had still been sleeping at the time. We decided to leave David and Anya in school till normal dismissal time so we could have some more time with Joana. Someone (not really sure who) called the funeral home but told them that we were not ready for them yet. Elizabeth came back and unhooked Joana from her picc line. Then I spent a few hours with Joana before Chris picked up the kids from school. We wanted to give them the opportunity to see Joana, if they wanted to. After they were home for a little bit, someone called the funeral home and told them they could come to pick up Joana.

There is so much more, but this gives you a glimpse of what happened during Joana’s last days.

I miss her so much, and most days it still feels so unreal. She was such an amazing young woman, and I will never forget the grace and courage she displayed during her five year battle.

She will forever live in my heart.

I found my answer....

...in a little yellow flower.

For the last couple of weeks I have pondered if I should start blogging again. Blogging is a touchy subject for me. In a way it helps me, but at the same time I struggle with it because I feel it puts a lot of pressure on me.

So for the past few weeks, I had this little war going on in my mind: Yes, you should blog again. No, don't do it. Yes, you should definitely start again. No way, big mistake.... You get the idea.

Fast forward to today. We went to Ann Arbor in honor of Joana's birthday. We walked through a most beautiful park and stopped at a perfect rock skipping place by the river. It wasn't right by the path, you had to actually climb down an incline to get to the river. There were small rocks, big rocks, medium rocks....and one old tree stump. That old tree stump had a hole in it, and in that hole, there was a beautiful yellow flower. That little flower hadn't grown there, someone had taken that flower from somewhere else and stuck it in the tree stump as if it were a vase. There were absolutely no yellow flowers anywhere around, and it looked like that flower had come from a purchased bouquet.

I was flabbergasted, and I still am. As you know, the title of this blog is "Chasing Yellow Flowers", and here was a yellow flower where it definitely didn't belong...

A sign? A coincidence? A not-so-subtle kick in the butt?

Whatever it was, it convinced me to start blogging again! I'm not sure which direction this blog is going to take, but I know it will be a combination of journaling about my road to becoming healthier and losing weight as well as different aspects of dealing with loss (not weight loss, but loss of a loved one).

I hope you will join me on this journey, and also hold me accountable. But more about this in the next couple of days...

If you do want to follow along, you can enter your email in the upper right corner of the home screen...this way you get an email when there is a new entry.

(P.S. I was VERY tempted to delete my old entries and start fresh (especially because they are evidence for the fact that I have not followed through with losing weight in the past), but then I decided to leave them. My failures are a part of me as much as my successes...so they are here to stay!)

"Doing okay"

What does "doing okay" really mean?

Today I talked to a friend and asked her how someone was doing...someone she knows very well and who has also lost a child to brain cancer a little over five years ago. She told me that the whole family was doing really well and went into a bit more detail.

Then I started to think. If someone was asked how I was doing, they would probably also say that I am doing really well. After all, I "look" like I am doing fine. I go to work every day, I don't have swollen eyes from crying all day long, I take care of my family, I laugh, I decorated for Christmas, I started a scholarship in Joana's honor, I don't hide at home all day long...so wouldn't you say I am doing okay?

But what dose "doing okay" really mean? My heart hurts every minute of the day, I cry when no one sees me, I don't sleep well, I comfort myself with food, I am unmotivated and have to force myself to do most of the things that others see and that would cause them to say that I am doing okay. Is that "doing okay"?

And if it is not, how many other people are really not doing okay that appear to be doing fine? There is no way to look at someone's heart to see how much they are hurting on the inside.

I don't know if you can ever be "okay" after losing a child. Watching my daughter suffer and eventually take her last breath will haunt me forever. The memories of the awful last days still overshadow the good memories I had with her. I often wake up after dreaming that she has died...only to realize that the nightmare was really not a nightmare after all.

So, what does "doing okay" really mean? If it means I can function and take care of the things I have to take care of, then yes, I am doing okay. But if it means that my heart is healing and I am enjoying doing  these things, then no, I am not okay.

It is so easy to look at someone without realizing how much they are hurting, how hard they have to work at appearing "okay". So please be gentle with others...you never know what they are dealing with and what their hearts look like....maybe they have to struggle every day to survive with a broken heart.

The three "G"s - Grief, Guilt, Germany

I am struggling with the three "G"s - Grief, Guilt, and Germany.

Joana has been gone over one year. More than 13 months. And things are not any better. I miss her so, so much....it's hard to put into words how it feels, how much it hurts, how it consumes every second of my day.

On the outside, I look like I am just fine. I go to work, take care of the kids, keep up on the laundry, and cook dinner on most nights. But honestly, I don't want to do any of those things. I am "functioning", but I am also pretending and acting each and every day. And it is exhausting.

Often, I feel guilty for feeling the way I do. I know there are parents out there who have lost all of their children, and I "only" lost one. But that one loss is just so overwhelming and the sadness so all-consuming... It would be empowering to be given permission to grieve for more than just a few months.

The last "G" is Germany... The last time we visited was 6 1/2 years ago, just before Joana's diagnosis. Joana absolutely LOVED Germany - the language, the culture, the cities...and she always talked about wanting to go back to visit. We never did...and that absolutely breaks my heart. Last September, when we were told that Joana's tumor was incurable, I asked if we could travel to Germany, but the answer was a definite no.

I had many chances to take Joana back to Germany, but I never did...and I feel incredibly burdened and guilty about that. And than, all of a sudden, it was too late...

Now Chris, David and Anya all want to go next year to visit Oma, and I am in a panic about it....and no one understands why. How can I go to Germany and be happy and excited about it when I know that that's the one place Joana wanted to visit again? Everyone tells me that Joana would want us to go, and that it's not fair towards David and Anya if I refuse to go. And I agree with both of those things. I want to be able to "suck it up" and go for their sake...but even researching plane tickets throws me in a panic. If merely visiting traveling websites gives me symptoms of a panic attack, how would I possibly be able to get on a plane next year?

So yes, I agree that I should not deprive the kids of visiting Germany. But at what cost?

On the one hand, I think we should not go next year, and maybe I could get some help from a counselor so I could feel better about going the following year.  But on the other hand...what if we don't go and then something happens to my parents or my brother? How would I deal with that guilt?

It feels like it's a no win situation...and I hate that it's turned into this. After all, isn't a vacation supposed to be fun and eagerly anticipated?

Identity Crisis

For over five years, I was Joana’s caregiver.

I had her diagnosis, her treatments, her appointments and long list of doctors memorized. I could tell you each of her medications, the dose she was on, the side effects, and when I needed to get a refill. I knew how to navigate through the MRI viewing software and what to look for on the images. I knew the early signs of Joana’s seizures and what to do if she had one. I had our insurance information memorized, and knew the oncology clinic’s phone number by heart. I even had her main doctor’s cell and pager number so I could call her any time. We saw the same doctors weekly for many months. The hospital felt comfortable, I knew where I was going, I knew the nurses, and I looked forward to be in an environment where “people got it.” I knew our routine – blood draw, doctor, infusion – and found comfort in it. I was doing something to help, I could actively participate in the fight against Joana’s cancer by being her caregiver.

 

Then Joana died, and with it my role as her caregiver and my relationship with so many people that had been a regular part of our lives.

 

Joana’s illness consumed me and my time, and suddenly it was all gone.

 

I had spent a lot of time communicating online with other brain tumor moms, but suddenly I felt like I didn’t fit in anymore because I didn’t have a child with a brain tumor. I went to a fantastic conference in Chicago by the ABTA with Joana three months before she passed away, and we wanted to go every year because it was such a great experience. Well, can’t go there anymore….

 

When your child dies after a long illness, you not only have to live with the loss of your son or daughter, but also with the loss of much of your identity. You lose many, many people in addition to the most precious one - your child.

You have lots of "secondary losses."
 

It is still so hard for me, and I wish more than anything that I could be “Tina, mom of Joana, grade II oligoastrocytoma in the left temporal lobe. Two surgeries, two rounds of radiation, various chemo protocols, but still fighting” again.

The second year

This post is so well written that I had to "steal" it. I can relate to so many of the things expressed here, and I couldn't have said it better myself.

THE SECOND YEAR: My Journey through year two.

Except for true acceptance, which is the last of the 5 stages of grief, the second year I have experienced to be the very hardest. As the fog and busyness (all of the 'firsts') of the first year fade, we find ourselves more alone as many have gone back to their lives and we spend more time by ourselves with our grief. We resent or are angry that it seems no one but us remember our angel. I call this the 'reality check' year as the fog has now lifted, the numbness is now gone and we see the world going on around us, but we are stuck where we are. Our child's friends are going on with their lives. Graduations, weddings, college, new jobs, having children. All of the milestones in lives that we had envisioned for our own children and we realize that they will never be a part of nor will they ever achieve. We become more panicked, if that is possible. Everything becomes permanent with all of the 'seconds' of each holiday, birthday or special events.. nothing is the same and we now know that nothing will ever be the same. Not for us, not for our child or even our family and friends... it is as if we are realizing and truly comprehending that this is truly for real and there is no going back. There is no way to fix this, there is nothing more for us to do. This is also when we realize that our futures have been forever altered and we must now recreate them anew each and everyday. Who are we if part of our identity has been taken and our futures are gone from us. This is a year of reality, a year of the most difficult and draining work for us to get thru.. It is when we must now make the hard decisions for our own sanity, to seek help for our depression and complicated grief from a professional therapist, grief group or medical doctor because we realize this is too difficult to do alone. This is the year that starts new traditions for each holiday, birthday or special day of the year. We begin to lose those around us who cannot understand us or cannot be around a grieving parent each day. We also find new friends who truly understand our journey as we reach out to them to understand our own path thru this grief. There is such a huge transition between the busy and foggy first year of numbness and pain to the second year of permanance and hard work of grief that we seem to become so much worse even though we are going forward. Please know that it is the nature of the beast as our brains fog themselves during the first year so we can function and actually do and get thru all the things we need to do for our angel.. thank goodness it does... but, when that fog lifts and the reality sets in, it feels as we have walked into a brick wall and cannot fathom that this pain or grief will ever get better. It is now when we need our faith and hope the most on this journey as we are in such a place of darkness and despair that we can no longer see the light at the end of this gut wrenching, heartache of grief. Our pain seems to control us even more than the first year, we now notice it more as it isn't letting up. But do not totally despair, as this 'acute' stage of painful grief does eventually recede and we do find ourselves onto yrs 3 and 4 in a different state of mind having survived that horrid second year of in our face, heartbroken reality. There truly is hope, there truly is light. the light is still there, we just have to keep going towards it no matter how difficult it seems.. we have survived the very worst day of our lives, we will also survive our grief. We are moms. We are the strongest beings on this earth. We may not feel so strong right now, but, if you think about how much you have endured so far, you will find your own strength. It is led by the love we have for our angel and our desire to get back to living. To learn to live with our angel by our side, to not stay stuck in this one stage of grief... we hope for better days, we beg for relief of heartache and we keep the faith that we will prevail. We can do this. We will do this no matter how hard the journey, to honor our angels lives and to honor our own place and purpose in this world we live in. There are many who love us and many who need us, and in helping others, we also help ourselves as we learn our own path from those on it that have gone before us. Listen to their wisdom. Hear their survival and their methods that helped them along their way. Use the methods that work for you, as your path is as unique as your relationship to your child is. Know that life is a journey and we must go with it or it will go on without us. We do not want to live here in this darkness, we want to find our way to the light. There will always be pain, but it will no longer control us.. there will always be times of sadness, but also times of joy. It is a balance of sorrow for our loss and happiness for our lives that we must learn to live again. No matter the tragedy, our lives are forever altered . Although this is our worst tragedy , we will get thru it also and come out stronger for having suffered thru it.. Hold on... it will come. Hold on.. it will ease. Hold on, the horrible daily pain will end... This horribble no good, very bad, gut wrenching, heart gripping, can't stand it one more minute pain.. will end... Our grief will turn to sorrow and loss.. our lives will be better and we will have created the person we will now become because of our struggles thru this terrible time.... It is hard work, but, we have never shied from hard work before and we will not do so now. We will take it one day at a time and when our grief grips us, we will embrace it, work thru it and then let it go each and every day. Grief is an emotion that we need to learn to control.. and we will. We will take hold of it and we will conquer it.. we are so much stronger than we think.. look back at how far we have already come from that first day, that first week that we thought we couldn't survive. Yet, here we are in year two.. still going forward.. still wrestling with the pain, still figuring out who we are and where we go from here. We are fighters, we are survivors, we are MOMS.... and our angels and those we love are counting on us to get thru this year and on to the next.. we can, we will, we matter, we are worth it... and here, we are never alone.. hand in hand, heart to heart we will learn from each other and we will help each other go forward.. one day , one moment at a time... Hold on moms... we got this.. Our love for our children will sustain us... Their quest for life will propel us forward.. their strength will get us thru this worst time of our lives............................ we can.. we will.. together

Feelings 101

One year ago today, I took Joana to Ann Arbor to see her oncologist for the last time.

One year ago, I met our hospice nurse for the first time.

One year ago, I knew that two days later we would celebrate Joana's last birthday with us.

One year ago, I thought I still had a couple of months with Joana.


The last year went by in a fog, a daze. I think your body has the ability to protect itself from the harsh reality so you can survive.

Joana's death still feels so unreal. The finality still has not completely sunk in, and I am scared what it will be like when it does.

How, you ask? How can the death of your child feel unreal? Isn't she gone? Hasn't it been almost a year since you have seen her?

Well, I have no answers. In my mind, I know that Joana has died. And I know that she won't come back. But somehow, on a level that I can't explain, it still feels unreal. It's almost like my senses and emotions have become dull, like there is a huge buffer on them that doesn't allow me to feel....good or bad. I have to function...as a mother to my other kids, as a wife, at work...and in order to do this, I have to push my feelings and emotions far, far away.

I belong to a group on Facebook for bereaved moms, and they have week-long retreats a couple of times a year. Moms get together, talk about their kids, cry together, laugh together, and enjoy being with a group of women who know what it feels like to lose a child. It sounds like such a safe environment to start the healing process, but unfortunately, the retreats are never held during summer vacation, so I wouldn't be able to go.

Honestly, I am afraid what will happen if I allow myself to feel more. Could I get out of bed in the morning? Could I function at work? Could I be a mom to the other kids? Or would the pain and sense of loss be so overwhelming?

And how can you allow yourself to feel just enough so you don't feel numb, but not so much that you can't function? Is there a middle ground, and if so, how can you find it? And when you allow some emotions to surface, will other emotions sweep you away?

For now, I will archive those thoughts and concentrate on making it through the next two weeks. Maybe I will revisit them then.

Rough week

This has been a rough week as I am struggling with Joana's birthday coming up on the 25th. It's her first birthday that we will "celebrate" without her, and I'm not sure how I will hold it together on that day. The kids think we should have birthday cake, but I don't know if I can do that. On the one hand, I think I will feel like something is missing if we don't have cake, but on the other hand I know how incredibly hard it will be to make a cake for my daughter who is not here with us any more.

Either way, I think the day will be incredibly difficult and I am dreading it. Last year Joana was still able to open gifts with us on her "real" birthday, but only 3 days later, when we had her party, she wasn't able to any more. And 9 days after her birthday she passed away. The memories are so painful and often take my breath away. I miss her so, so much, more than words could possibly explain.

I was thinking about making a slide show with pictures of Joana in honor of her birthday, but even that turned out to be too painful. Seeing her big smile on the photos throughout the years and knowing that that smile was stolen from her leaves me so very sad and angry.

One year ago we had so many lasts, and this year is full of firsts....firsts without Joana.