Nicknames

When I was pregnant with both Lydia and Harry we didn't know either of their sex, so each of them had a "womb name" that we called them before they were born. Lydia's was "Little Foot" - because she was so active, we'd always see these feet sticking out and we'd say, "Oh there's a little foot", which morphed into "Little Foot" as her womb name. I remember when I first held her right after she was born, I said over and over, "Hello Little Foot!" and then we thought to check her sex and suddenly she was, "Lydia".

Lydia came up with Harry's womb name. One day at breakfast she just decided he needed a womb name and she declared it should be "Huggypet", which we loved and it stuck and became one of our favourite nicknames for Harry (along with Hares-y-bares-y-boinga-boy).

This time around, we told Lydia on a friday that I was pregnant and found out on the following Monday that he was a boy. Lydia suggested a womb name, "cutie pie" but it has not stuck. It is interesting to me, knowing that Sebastien is a boy and so clearly knowing that this is his name, we don't call him by his womb name at all - he is Sebastien to us.

Much more so than with Lydia or Harry, Sebastien seems so real and a part of our family already. Maybe because this is our third child and we know so much more what to expect? We feel so clearly that we already know and love him. Maybe it is just because of the age that Lydia is at, and the fact that she talks about her brothers - both Harry and Sebastien - every day - but he feels more real to me than the other two did in utero.

True to form, Lydia has already come up with several nicknames for Sebastien - all three of which I think will stick after he is born - "Basji", "Sebasji" and the more playful "Basji-Boogles".

On the pregnancy side, I continue to feel great - I wish everyone could have such a wonderful pregnancy! And Basji is very good. He is very much like Harry in the womb - gently active. When I am busy he sleeps and he is most active first thing in the morning and between 10-11 pm at night. I hope this doesn't mean that he is going to be a great sleeper only as long as someone is holding him and walking around! Every now and then I am overwhelmed with fear that he will get sick just like Harry and we will have to do the whole thing all over again - but I try to pretty quickly quell that fear as understandable but purely irrational.

Lydia said an interesting thing this morning when she and I were cuddling in bed before getting up. She declared that "Basji is going to be the best little brother ever". Then she quickly corrected herself, "Well, Harry is a best little brother too, but Basji is going to stay with us in his little overcoat a lot longer than Harry did, so I will get to do more with him".

That is one way we have talked about Harry that really has stuck with Lydia - that our bodies are really just like little overcoats that our souls, our true selves, wear. That each of us are "souls in little overcoats" and that when we die we take off our overcoat, but our true self, that which makes us 'us' never dies and goes back to heaven. Lydia will often talk about Harry in terms of, "remember when Harry was with us in his little overcoat" ...

Lydia makes me so aware of how trusting kids are of their parents when they are young. She was unable to get very excited about Sebastien until one day her friend Svava bluntly asked, "Is Sebastien going to die like Harry did?" and Lydia quickly piped in, "Yes, is he?" I could feel that she was having that fear but didn't know how to express it to me and that she was relieved when Svava finally said out loud what she could not bring herself to voice - it just took Svava to blurt it out for her and for me to assure her that no he would not, to help her overcome that fear and start to get excited about Sebastien.

Though I of course will always have my fears, which I think is only natural, though I try to keep them well at bay. It is amazing to see the trust of little children. Ever since I said, "No that is not going to happen to Sebastien", Lydia has simply accepted that as true, since her Mommy said it, and now she trusts that and dreams and talks about the future with Sebastien. I feel such an overwhelming responsibility to her to make that true, and also saddened that gradually she will have to learn that Mummies and Daddies do not know everything and can't tell you exactly what is going to happen. Although, I do feel that Sebastien is not coming for the same experience as Harry and his life will be uniquely his own. In any case, it is lovely to watch the innocence of a child completely trusting what their parents tell them - and to know that Lydia feels so secure in her life that she can trust us in that complete way.

So every day we talk about life with her two brothers, Harry, no longer in his little overcoat, but still very much a part of our family and Sebastien whose arrival in ~ 2 months time we anticipate with such joy and excitement.

It is so good to have so much joy and excitement to carry us forward through February and March this year. I remember sitting and writing pretty much exactly a year ago about my fears of entering into February 2009. It is incredible the difference a year can make.

I remember in the early weeks after Harry had passed over, wishing so much I had a fast-foward button I could press. I knew the first year without him with us "in his little overcoat" was going to be so very hard and I wanted to just get to the one year mark, because I had an intuitive sense that somehow things would get easier after that. Of course, you can't fast forward grief. The only way to deal with it is to do the hard work of walking through it. Walking around it doesn't make it go away - just actually makes the obstacle bigger and more difficult to deal with.

But we have managed to walk through "our forest of grief" and we do seem to be through the worst to a place, a clearing, where the light can shine through brightly. The trees have thinned and the canopy is mostly open and we can breathe in the air and sunshine and feel joy and happiness again. That said, for those that wonder, I would never say that I am "over" my grief over Harry's illness and passing. That I have somehow "gotten over it".

I have said before and I maintain, this is not something one "gets over" and I would like people to know this and remember this if they either ever find themselves in this place or have a friend or family member in this place. I will never be "over" losing Harry. I have learned to live with his absence. Learned to live with the fact that we can't see him in his little overcoat again. Learned to live with the fact that I can't hold him and watch him grow. Learned to live with the ache and the grief and the loss. But it doesn't mean that any of it has gone away. I've just managed to integrate it into who I am now and I know how to be me and live with this within me.

I am forever changed and different from the experience of being Harry's mum, for the better I hope and believe! And I look forward to being Sebastien's mum and how that will change me - I hope more for the better yet again. It is the one thing I know for certain in life - that change is the only constant - and the sooner we come to know that and live with that expectation the easier life seems every day!

Love,
Cynthia

To Chris Grabowski

This is a message to a Chris Grabowski --

I don't even know if you will be returning to this blog or not. But you had posted a comment a few days ago about the niece of a friend of yours, named Lydia, who has just been diagnosed with MRT of the kidney.

I am just wanting to pass on some information to you to pass on to Lydia's family. One of the best internet resources for MRT is the www.cbtrf.org. This is the web site for the Children's Brain Tumor Research Foundation. It is an organization founded Jeff and Katie Shaddix in honour and memory of their son Jonathan, who passed away from AT/RT (the brain tumor verson of rhabdoid cancer) in May of 2009. Jeff is trying to keep a database of all kids with AT/RT / MRT / extra-renal & non-CNS MRT (basically all other Rhabdoid cancers). The web site also hosts a number of discussion forums and is a really good place to go to find out about the latest research and treatment protocols for rhabdoid cancer.

The AT/RT / Rhabdoid community is a very supportive one - we have all been through the experience of our children receiveing this heart-wrenching diagnosis and dealt with the challenges of chemotherapy and, in some cases, radiation. I would strongly urge them to register on the site into the database. As Jeff is trying to gather a database all children with MRT / AT/RT in the world to be useful to research.

If Lydia's family has set up a caringbridge page or carepage or web page or blog - could you let me know - Jeff Shaddix at cbtrf.org would also like to know as he tries to keep track of all of our rhabdoid kids. I would like to follow her journey and know how she is doing so I can be specific in my prayers for her.

Peace,
Cynthia