Moving forward...

We're back!  After the funeral, we took a break and left the city for the Lake.  It was a much needed retreat.  The funeral was beautiful and felt so perfect.  I was able to add a few special touches that I didn't get to do for Ashley's funeral, and that made me happy.  We sang "Blessed Be the Lord" at the graveside and I sang it for both girls.  And then I felt peace.  I gave them both, the best that I had.

Moving forward from this point will hold a lot of unknowns, and I am so glad that we had time to rest together.  It is truly amazing how nature can feed the soul and remind one how to be thankful.

Purple

Have I ever mentioned that I picked favorite colours for my girls?  I decided they needed to have a colour, so Ashley liked pink and Hope liked purple.  For Ashley's funeral, Alex wore a pink shirt for Ashley.  For Hope's funeral he is going to wear purple.  He's a great Dad! 

Anyway, it occured to me (with the help of a friend), that others might want to join in the purple fun.  So, I'm letting you know that you are welcome to wear a bit of purple for Hope when you come celebrate her life with us.  Anything purple is fine...a purple article of clothing, purple flower, whatever you choose is quite alright for Hope's celebration of life ceremony.  And if you have nothing, don't worry...we'll still let you in the church...te he!

So the funeral will be at 1 pm on Thursday with internment following immediately afterward with just close family. Family and friends will be invited to the hall immediately after the funeral mass for a reception (roughly 2 pm).  We'll ask everyone to go directly into the hall after the funeral so that you can watch the slideshow and have some food.  We'll be going to the cemetary with close family and return fairly quickly, since the graveside service is short and St. Vital cemetary is close by.  We'll look forward to mingling when we return, and hopefully won't miss too many people. 

Funeral arrangements

Today we focused on funeral arrangements.  It's been a heavy day, with some tears but made easier by the supportive comments we've recieved here, and by phone, and by facebook.  Thank you soooo much.  Most of all, we were blessed by family today, who helped with the children and meals and cleaning while we made phone calls and wrote emails.

Hope's funeral will be held on Thursday, August 18th at 1pm.  It will take place at St. Timothy's RC Parish on 135 John Forsyth Rd.  There will be a reception and memorial slideshow to follow in the hall.

If friends and family so desire, donations may be made to the Children's Rehabilitation Foundation (http://www.rccf.ca/) which is the fundraising arms for RCC, which provided Hope with the expertise and equipment needed to make her daily life more comfortable.

Good-bye Hope!

This morning we had to say 'Good-Bye' to Hope.  My mom was with her when she took her last breath, and it was very peaceful.  We were on our way home from church when Mom called to tell us that she wasn't looking very good.  We got home shortly after she died and were blessed to have some crying time with her while my mom took the other kids outside.  I'm so, so, so glad that Hope was with her Grandma when she died.  We would have loved to be with her, but we know that it is a blessing this way too.

I am so glad that we have had some time with Hope.  After Ashley died, we prayed that we would have a few more months with Hope (Wow, this is a really hard post to write)...and I guess we got it.  It is so hard to let her go.

Yesterday, I bathed Hope and braided her hair.  When I brought her over to the couch, Mira was reaching for us, so I sat on the floor with Hope and Mira for a moment.  I'm so glad that Kayla snapped a photo.  It will be the last one I have of Hope.  Wow, that's hard to take, too.  How does one wrap their mind around the fact that they can never again take a picture of their child.  I no longer have my girls to share with you.  How is this possible...

Funeral arrangements will be posted here.

Thank you

Thank you for the positive response to my 'helper list', I wasn't sure about the whole idea, after I wrote it.  But now I'm feeling good about it.  I can't promise that you'll get a phone call, but I can promise you that I will make a call when the need arises. 

Hope has not changed much.  She still turns blue (mouth, hands, sometimes feet), when she has a seizure.  She turns almost purple when we change her diaper, but starts breathing again when we turn her on her side.  We don't sit her up AT ALL.  No chair and no carseat.  The wagon works well for her, when we go for a walk.  She still sleeps most of the time.  We increased her phenobarb and because the seizures have decreased a bit, she has had a few awake moments.  In fact, she had her eyes open for about 2 hours one morning, but only once.

I still like to bath her and braid her hair.  This was taken a few days ago, when Hope could tolerate a bit more movement.

Blue

Well, normally I like the colour blue, but I'm not liking it on Hope.  She's turning blue (mouth, hands, feet) today with her seizures and with each turn.  She's still not waking up.

On the upside, Brodie had a great time at the farm with Grandma and Grandpa Allen.  Fortunately, he got home in time to see Mira start crawling.  Yay, for Mira.  Not so 'yay' for me, who now has to 'baby proof', and find all the dust bunnies before she does.  Then again, maybe I could just tie swiffer cloths to her knees and let her take care of the floor!  Te He!

Today, I started a list.  Surprise, surprise...I know.  The list is labled, 'Helpers', because I can't seem to remember to ask for help when things get tough, and even if I think to ask, I usually can't think who I should ask (despite the many wonderful people who have offered help over the years).  So, I've started this list, and if you want to be on it, you can email me. 

I am preparing for the difficulty of losing Hope, as you can guess.  I have heard that a second funeral after your child has died, can be double the intensity, and the months following could be a surprising downturn in energy and mood.  Maybe if I expect the worst, then it won't happen.  Either way, it doesn't hurt to let people know that there may be a need that they could fill.

A bit of sunshine

We enjoyed our bit of sunshine last week.  Mira and Brodie were outside almost the whole time.  Mira really likes the grass, and was very content to sit on a blanket and play with grass, or a water bottle.  Sometimes we would give her a toy, but she's so happy with the unlikely things, that we don't have to worry about toys too much.  We also had a little visit with cousins...

During the days we were gone, Hope continued to worsen.  Her seizures increased in intensity and she started to vomitt with the seizures.  We've had some nice days with her since we've been home, but she's changing a lot.  Even though some would say, "Oh, she looks good to me"....there is a lot going on that others might not see.

As of today, she is hardly waking up anymore.  If she does wake up, she promptly has a seizure and goes back to sleep.  We were getting worried about the intensity of the seizures, and had planned to talk to doctors about increasing meds today (especially because she is now vomitting with some seizures).  But now, her arms and legs barely move with the seizures, as if her body doesn't have the energy to do what her 'messed up' brain is telling her to do.  Her face still twists and she makes little squeaks and her hands will jerk a bit with each spasm, but no more arms and legs scizzoring.  You might remember that Ashley had no more seizures in the last month before she died.  This feels similar.

The worst part is her vacant stare.  She just looks so lethargic and exhausted, and if her eyes do open, there is no real awareness.  To me, it sounds ridiculous when someone says she 'looks good', but I'm rather sensitive right now.  Of course, Hope looks quite peaceful and sweet when she's sleeping, so that's what people probably see and comment on.  Perhaps it is supposed to be an encouraging comment.  It's better if there is understanding and compassion. 

I see the blue tinge around her mouth, and the way her skin marks easily so that we're very careful to watch for pressure sores.  I see the way her hands turn blue with each seizure and sometimes don't pink up for a while.  I see the shallow breathing, and occasionally irregular breathing.  I see her not tolerating formula, and the struggle we have each day as we try to meet her nutritional requirements.

I'm telling you this, because I think some people mistakenly believe that we are 'just fine' (and therefore Hope must be doing okay).  And I know that I usually present myself as happy and content when I'm with people.  I like being with people.  Visiting and interacting with people gives me energy.  So, don't look at me and assume that Hope must be doing fairly well, just because I'm not falling apart.  When I say "she isn't doing very well", I mean it.  Yes, that phrase is very subjective and really doesn't give much information.  That's why I have the blog.  So, I can give you a better idea of how Hope is doing.

Thank you for caring enough to read this.

Quick update

We're back.  Hope has had a rough week (making it difficult to concentrate on 'fun/relaxing').  I'm tired, so I'll leave a bit of an update and hopefully get back soon to chat more.

It seems that Hope is having more violent seizures now, and she's puking with the seizures.  Her eyes are still puffy, and right now she sounds congested, but that's because she just finished puking up some brown stuff during an awful seizure (9:30pm ish).  I know this doesn't sound too positive, but it's what I came home to.  So sad...poor Hope.

Still Sleepy!

We still have some cold symptoms floating around here.  I have been feeling quite unwell.  Brodie and Mira seem to be mostly better.  Hope is sleeping a lot.  She's still coughing up green stuff, and her eyes are 'gunky' all the time (Mira had the same thing with her cold).  She isn't having fevers anymore and her breathing is nice and even, so that's good.  We usually see her awake for a few minutes and then she has a seizure and goes right back to sleep. 

Today, we're trying to decide if we should go ahead with our plan to head out to Killarney.  Hope is going to stay here with our respite worker.  We won't be far, so we can easily come home.  I'm just trying to decide if I'm comfortable leaving her.  Hmmm, 'comfortable'?  I doubt that I'm ever content to leave Hope behind, it just feels wrong.  But trying to do something good for the rest of the family is usually wise, and I know Hope won't mind.  I just have to talk myself into it.

So, you probably won't see anything here on the blog till the end of the week. 

We've spent the last couple days visiting with our family from England.  I think they enjoyed Mira quite a bit.  I know Mira and Brodie loved all the attention...

And Hope recieved a lot of attention too.  She liked her cuddles the best...