Packing Up Harry's Room

Well, I have done it.

I spent the morning at the house and packed up Harry's room. So now it is just boxes that need to be put in the storage container. His crib, which needs to be taken down and stored too, and the rocking chair and little bookshelf.

And his dresser. Still didn't know quite what to do with his clothes. I am very tempted to just leave them in his dresser and cover it with plastic and leave it in the room and deal with when we move back in. I guess I'll decide with Henry on the weekend.

The actual doing of it wasn't nearly so bad as the anticipation and planning of the activity. I find that usually is the case - the anticipation of an experience without Harry tends to be worse than the actual living through the experience.

I find that my usual method of having a big cry as I anticipate and prepare and then writing about it on the blog - which is somehow so cathartic for me - usually translates into the actual event not being as bad as I had imagined. Doesn't mean it is easy, just that it is never quite as bad as I manage to paint it in my imagination.

Now our house is really empty. I swear I am never moving again once this renovation is finished! I took some pictures this morning and will post soon.

Love,
Cynthia

Harry's Room

Thanks for the suggestions. I know I should probably buy a nice box of some sorts for the clothes of Harry's I want to keep.

One of the challenges is that I have to figure out which of his clothes I am okay with the new baby wearing and which ones are just "too Harry" for anyone else to wear. I just don't feel ready to make those decisions. Yet that is usually the way isn't it - life thrusts us into situations where we have to make decisions before we are ready.

I'm debating just pushing his dresser into the middle of his room and wrapping it well in plastic and not doing anything until the reno is over. I know it just isn't realistic to figure on buying the baby an entirely new wardrobe - I'm already too much of a Winnipegger to go to that sort of extravagence! I know Harry would want his little brother to wear some of his clothes. I think I'll be okay with the baby clothes. It is going to be the outfits he wore post-diagnosis and especially the ones in the months just before he passed over. I think those ones will just hold too much of Harry's energy for anyone else to wear.

So I know at some point I have to sort through all his clothes and decide what to save as special and what to give to the baby. But I just don't want to do that right now! Maybe I'll start with everything else in his room and leave the dresser till the last and in the process it will come to me what to do.

Siobahn - we did receive the lovely book - thank you so much. It was so incredibly kind of you to think to buy it and send it. I have been so bad at sending emails ever since Harry was diagnosed. I read them, but take forever to respond!

Peace,
Cynthia

Packing Up Harry's Room

I have to pack up Harry's Room.

I don't know how to do this.

We are in the middle of a major renovation of our house - so major that three weeks ago we moved out into a friend's house. (Aside: We were super fortunate that this friend / former colleague of Henry's has moved back to the US to take up a tenure track position in Denver and his beautifully renovated house on the river here in Winnipeg has not yet sold. He is kindly letting us stay here during our renovations. If anyone is looking to buy a beautiful river lot in Winnipeg drop us a line!!!)

Our main floor is basically gutted, as are our bathroom, watercloset, linen closet & half of the back bedroom on the second floor and the hallway / stairwell wall between the second and third floors of our house. We have moved everything out of our house and put it in storage, either in the basement or in a storage container. Every single room is now packed up and basically empty, or with the remaining furniture pushed into the middle of the room and covered in tarps.

Except Harry's room.

I have not yet had the courage to face packing up Harry's room.

I thought it would be easier to do this way. That is, since we are packing up everything else it wouldn't feel like such an individual or final act. We're not just packing up Harry's room, we're packing up everything in the house.

But it isn't the same. It feels incredibly final and I just don't want to do it.

We'll unpack everything else. In a few months, everything else will come out of the boxes and be put back into its place where ever it belongs in the house.

Except for Harry's things. Harry's room will never again be Harry's room after the renovations. It's going to be our office. We're giving the baby our room and we're moving to the back bedroom, because I want the baby to have his own space, not his brother's space. But once I pack these things up, they will never be put out in the same space. This is a letting go that feels so overwhelming, it almost feels like a betrayal to Harry. Though I know in my heart it isn't. He isn't in that room anymore. He is everywhere in the universe and always in our hearts. But still it is so final a thing to pack up his room.

I don't want to touch it.

I tried yesterday afternoon.

Henry and I spent a few hours in the house, finally finishing up cleaning out the last bits in our room. I still had some time before we had to go back to Kingston Row (where we're staying) to prepare for Thanksgiving Dinner. I went into Harry's room and sat in my rocking chair, surveyed the room, trying to decide where to start, and I couldn't do it.

I sat and held onto his baby blanket, cuddled on my shoulder just as I had held him in it so many days and nights, and rocked in the chair and cried and cried and cried. I cried so hard I could barely breathe.

I don't want to change a thing about his room.

I don't want to take down his crib. I don't want to pack his books off his shelf. I don't want to pack away his shoes - his yellow crocks and his brown squeekers. I have so many memories of sitting for hours nursing him in that chair. I don't want to not be able to sit in that chair and remember him there.

The chair is in front of the window and a toy wooden block train sits on the window ledge. Sometimes, even in the middle of the night, Harry would finish nursing and instead of falling back to sleep on my shoulder he would reach over my shoulder for one of the train pieces. So I would sit with him, at 3:00 am and we'd play with the train in my lap and he'd laugh and laugh. Until he would get sleepy again, start to lose interest in the toy, and I could cuddle him in again, resting his head on my shoulder, one of the blocks from the train clutched in his chubby hand. We'd rock, I'd kiss his soft head and he'd drift off. I'd eventually pull the toy from his relaxed grasp and gently place him back into his crib.

Will I lose those memories if I can't sit in his room and remember them?

I most certainly don't know what to do with his clothes. I am afraid to open his closet and take out his clothes and pack them up.

They still smell like Harry. Even though I have washed all of them since he passed over, they still smell like him. Especially in his last few weeks he had a really distinct smell about him, and that smell still lingers strongly on his clothes. When I need to I can go into his room, open his closet, take out one of my favourites of his outfits, inhale deeply and still smell him.

I am terrified that if I pack up everyting and put it in a box it will lose its smell, his wonderful Harry smell. I am not ready to let that go.

So I am not sure what to do. I need to pack up his room, so they can put in the new wndows and paint the walls. But I can't touch his clothes. I don't want to just leave them in his room, because they'll get too dusty, and have to be washed, and then they might not smell right anymore. But I am not ready to move his things out of his dresser. But I have to decide soon, the decision can't wait forever.

I guess I just have to sit and still my mind and listen to my heart. It hasn't led me wrong so far where Harry is concerned. I have to trust that it will lead me to the right choice in this case too. I have to figure out some sort of compromise. Does anyone know a way to capture and bottle a smell? Not the essence of a flower or plant, but just a smell left clinging to clothes? I wish I knew how.

Maybe one day I won't need the smell of Harry. But I am not there now. Right now I need that smell to still have my connection to him. I try to always think, "what would Harry want me to do?" "What would honour him in the best way?" But I am just not sure.

But somehow this week, I have to figure this out and figure out how to do this.

Love,
Cynthia

Laundry

I was doing laundry this afternoon and it reminded me of Harry.

Harry loved to help me do laundry.

Up until a few weeks ago, when it got torn off as part of the massive home renovation we are currently enduring (!), our laundry machines were located in a little room at the back of our house off the kitchen, which Lydia and I called our, "Laundry Room / Play Room". It was about 10 x 10 and housed the washer and dryer, 2 toy storage cupboards, a children's set of table and 2 chairs, and a play carpet. This room was Lydia and Harry's playroom (one of 2 on the main floor, amazing how much of one's house gets devoted to our kids!).

Harry liked to stand in front of the washer door (front loader) and help me throw in the clothes. I can still see him standing there at my feet, holding onto the door frame with his right hand for balance and using his left hand to grab clothes out of the laundry basket and throw them into the washer. With each turn towards me to reach into the basket, he would give me a huge grin and laugh - it was such a fun game to him to see the clothes disappear into the washer. When the load was done, he liked to help pull the wet clothes out and then repeat the same process for putting them into the dryer.

I miss having Harry help me with laundry. I miss his grin and his laugh. And how much he just loved to play in this way, not knowing he was really being a great help. I miss these little things that we used to do together. Those special little moments in a day between a mother and her wee child, those precious moments of togetherness. I really miss those.

After Harry died, Lydia seemed to stop playing in the laundry room playroom. I don't know if it was just that the nature of her play has changed - being more into dolls and barbies - which are in her room, or if it is because of memories of playing with Harry so much in that space.

But it was interesting that she did comment to me the other day that, "Harry and I played in that room and did laundry there, but the new baby won't even know that our house had that room".

It is true, the new baby won't know what our house looked like before the renovations, or will only from pictures. He'll also only know his big brother from pictures. And from the stories I tell him. I will be sure to tell him how much his big brother liked to help me with laundry.

Love,
Cynthia

No Amnio

For now, at least, we have decided against doing an amnio.

I know a number of women who have had amnios and experienced no complications. But I also know at least one woman who miscarried a healthy baby after an amnio....

For me, it just doesn't feel like the right thing to do. And if there is one thing I learned from my experience with Harry it is that I have a pretty well-honed gut instinct where my kids are concerned. (Ah, if only I'd had that same gut instinct when it came to picking dates in my youth!! - At least that same instinct served me very well where Henry was concerned, so can't complain too much. For those who don't know, I knew I was going to marry Henry 2 days after our first date.)

I will do the standard triple-screen blood test this week and I suppose if some alarm bells are raised from that we'll reconsider our decision, but I won't do an amnio 'just to check' - only if there is some reason to really suspect a problem.

And even then, I am not sure I want to know. I know for a lot of families the logic behind having an amnio is that 'they want to be prepared' to know what to expect, when the baby arrives - especially to be able to prepare if you know you are going to have a child with certain physical or developmental challenges.

I actually don't want to know. We cling to any thread of certainty in our world of uncertainty, no matter how precarious.

I guess it comes from actually *knowing* what it feels like to be told your child is terminally ill that I don't think you can actually prepare for that moment.

Would it have allowed us to somehow 'prepare' knowing, five months in advance, that Harry was going to develop cancer?

No. Absolutely no.

All that would have happened was that we would have been miserable and depressed and scared and full of fear for those five months waiting for the bomb to drop.

Instead, life with Harry was glorious right up until the day we took him to the hospital and the nightmare started. But even then, once the dust settled, life with Harry was glorious right up until he drew his last breath.

So for me, I just want to revel in the joy of expecting this new little life to come into our family.

I once again choose optimism, hope, faith, believing in the good, believing that this little one has chosen to come to us at this time and we'll welcome him with love however he comes.

But you know, going through this thought and decision process has once again reminded me just how intensely personal this decision is. I would never, ever, impose my decision-making process or outcome on another woman. Going through it, it becomes so radically clear that what is the right choice for one woman will NOT be the right choice for another. So it absolutely reaffirms for me my unwavering support for a woman's absolute right to have complete control over her reproductive choices, even if another woman might make a choice I was not comfortable with. I might never have an anmio or an abortion, but I will fight to the death to ensure that other women have the right to freely make these choices. No one should ever be allowed to make these decisions for another woman, it is just too personal and the consequences too life-altering for another person to make this decision for a woman.

So for now, no amnio.

Peace out,
Cynthia

Amnio or no Amnio

We have a big decision to make this week - do we want to do an Amnio or not?

Sometimes I just wish we didn't have so many choices in our lives - it just seems to complicate life needlessly!

Given the fact that I am a 'geriatric' Mum - as the medical establishment so kindly labels me, I am automatically offered a number of tests for the baby. Hence our early ultrasound - given my age we were sent directly to Fetal Assessment - no use messing around with the standard ultrasound for us 'geriatric' Mums! So far the baby looks great - he was 'hopping' around in there, to use the ultrasound techs words.

Unfortunately, we found that I am a week further along than originally thought (this is a good thing, otherwise my due date was April 2 and just a wee bit too close to Harry's birthday for comfort!!!). But this meant that we were too late (had to be between 11 - end of 13 weeks) to look at the fluid in the back of the baby's neck.

Of course it goes without saying we'd love to be re-assured that this baby is 100% healthy. Except for our ages, mine in particular, we have no other risk factors for the baby.

One of our biggest concerns, of course, was Harry's cancer. There *has* been a genetic link found to Harry's cancer. There is one doctor, a Dr. Biegel at Children's Hospital of Philadelphia (CHOP), who is the foremost expert in the United States on the biological/genetic aspect of Rhabdoid cancers. This type of tumor is known to be caused by deletion of or damage to a gene (INI1) on the 22nd chromosome that effectively plays the role of a "tumor suppressor". Without getting too technical, it is usually a mismatched amino acid base pair (A, T, G, C) or an inadvertent STOP codon which essentially messes up the order of the amino acids that create the DNA strand. There are four possible genetic links with Rhaboid cancer (now cancers that do not carry the genetic deletion or damage to INI1 on chromosome 22 are no longer considered true Rhabdoid cancers):

BEST CASE: Localized or Sporadic - The deletion of the gene on the 22nd chromosome only presents in the tumor tissue. This means that if the primary tumor can be removed and/or killed, the chances of recurrence are smaller than in the next two cases. This is called a sporadic mutation - the mutation only occurred in the tumor location.

BAD CASE: a) De novo b) mosaicism (worse than de novo) - The deletion of the gene on the 22nd chromosome presents in all bodily tissue (tumor, blood, ect.), which is called a germline mutation. This is referred to as "Rhabdoid Predisposition Syndrome - RPS" and basically means that the child will be predisposed to rhabdoid tumors throughout his/her life, and is much more likely to experience a recurrence due to the fact that every cell in the body has the mutation. This can also include recurrences outside of the primary tumor location (kidneys, lungs, other areas of the CNS, etc.). However, in a De novo mutation, the gene deletion does not exist in either parent. Rather, the mutation occured very early in embryonic development, or in some cases, was there prior to conception (a mutation in a single or a few sperm or egg cells), which is referred to as mosaicism. Due to mosaicism, any future children have approximately a 1%-2% chance of receiving the gene deletion.

WORST CASE: Inherited germline - For the AT/RT / Rhabdoid patient, there is no difference between this case and the one above...they both mean that every cell contains the deletion and recurrence is likely. This case, however, means that either the mother or father also have the deletion in their constitutional (e.g. blood) cells, and directly passed this genetic predisposition down to their child. This scenario is the least likely, since most people with this gene deletion die in childhood, never bearing children. There are, however, people who have lived perfectly normal lives as carriers of this mutation, though they are rare. I (Jeff Shaddix) know of three current cases of AT/RT where the mutation was passed directly from one of the parents. The ramifications of this scenario are much greater, because it can effect siblings, nieces, nephews, etc., as this mutation could run in the family. Other children from this couple have roughly a 50% chance of having Rhabdoid predisposition, which could lead to childhood death.

(Thanks to Jeff Shaddix from www.cbtrf.org and the parent discussion forum for the above information on the different genetic options of the genetic mutation).

Harry's tumor biopsy sample was sent to Dr. Biegel at CHOP for genetic testing back in March / April 2008. Very fortunately, his tumor was found to be the first case - localized or sporadic - only 50% of his tumor sample contained the mutation and 50% was healthy cells. This means that he did not carry the genetic mutation from birth and neither Henry nor I would be carriers.

If his tumor had been inherited - either de novo or via mosaicism - then the risk of other siblings getting this cancer would be significant 1 - 2% in terms of a de novo mutation and possibly higher in a mosaicism (there would be no way of telling what % of a parents sperm or eggs carried the mutation) and as high as 50% if one parent were a carrier. As unbelievable as it may seem for such a rare cancer, there are a number of families that have had 2 children die from this cancer. But in all those cases the cancer was one of the inherited varieties.

The risk for us is still non-zero but very, very, very small - something like 0.00001 x 0.00001.

We just have a lot of faith that this baby is coming for a very different life experience than Harry and so we are not concerned. So there is no need to test for Harry's cancer - because it wasn't inherited.

Had we had an amnio with Harry it would have told us he was a completely healthy baby - it couldn't of told us that when he was 10 months old he'd be diagnosed with a lethal cancer.

The risks with an amnio also just seem so high. There is a 1 in 200 chance of miscarrying a perfectly healthy baby. These may sound like reasonable odds to some, but when you have had the 1 in ten million thing happen to you, 1 in 200 isn't particularly reassuring! We would be devastated to miscarry a perfectly healthy baby boy.

Sorry to all my male friends and family out there - but I have to believe that if men had babies we'd have developed a better genetic testing procedure than an amnio.

I mean really, can you imagine telling a perfectly healthy adult:

"We want perform a medical test on you, just to verify that you are healthy, because you have certain risk factors for disease. No, we have no real reason to believe that you are sick, just your age, but we do this test all the time. And, oh, by-the-way, one wee thing, there is a 1 in 200 chance that you will die as a direct result of this test."

Who in there right mind would subject themselves to this test? I'd say no-one. But yet, we ask mothers and fathers to make this decision for their children. Crazy.

We'll do the standard blood testing. But as you can maybe guess, we are really leaning against doing an amnio. I hate the thought of invading the baby's space with a needle. I'm not even sure what we'd do with the information when we got it. By the time we got all of the relevant information I would be at least 20 weeks and that seems way, way, way too late to terminate a pregnancy, at least for me, personally.

And also, I look at it this way, I would never, ever, ever for a moment give back the 16 months we had with Harry. I would do it all over again with him if I had to. I would never ever say I wish he hadn't been born to spare us the grief, my life has been so forever and deeply enriched by being his Mum.

So I guess I look at the whole amnio thing as a relic of our societies' desire to control that which really is not controllable. Henry and I have always maintained, that anyone who wants certainty in life should not become parents - it is the ultimate act of surrender to the unknown!!!

I have become way more spiritual through my experience with Harry (I specifically do not say 'religious' because I associate that with an institutionalized view of faith and most institutions would kick me out and label me a heretic for my spiritual beliefs!). And I really believe that we come into this life for a particular set of experiences. Harry's life and life experience was uniquely his own. His little brother is not coming to live OR re-live his brother's life - but coming for his own unique life experience.

I just have faith that this little guy is coming to be healthy and be with us for a long time. I don't want him surrounded by a whole lot of negative thoughts and fears either. I just want him bathed in loving, positive thoughts and feelings. I know he already knows how much his family loves him, even though we haven't even met him yet.

So ... we're leaning against the amnio ... but we still have a week or so to finally decide ....

Peace out,
Cynthia