I was talking with Patti the other day about the ‘costs’ of dealing with a child with cancer. The medical protocol is a well tuned machine at this point, but the schedule for visits, drug administration, tests, etc. has the hours of a full time job. We can see how a family could loose everything, or have to sell a house, or something to get through this, because you can’t go back to “normal”.
In our situation, there are some things that we are finding hard to balance. 1) we have a daughter who is fighting cancer (and winning). 2) we have a new-born son who requires a lot of holding and feeding and usual new-born stuff. 3) we have a 2 year old that is very busy and wants to touch and climb and jump and run and search for gum, not to mention spitting, throwing food, peeing his pants, dumping makeup on the floor, and he also has an egg and dairy allergy that keeps us on our toes. 4) we have work to fit in there somewhere. 5) oh yea, there are two other kids, one that has AD/HD, and one that has well developed adult emotions.
Patti is a very organized and capable person… she could do any combination of 1+2, 1+3, or 2+3, but 1+2+3 is too much. I could do the work thing, or carry the load of the one that patti cant carry, but both is really hard. We are trying to find balance and we have very understanding work situations and supportive family and it is still almost more than we can carry.
Today serves to show what I mean. I have a daughter that needs new glasses and needs a visit to the optometrist that we really trust in abbotsford, but he only works a few days a month here and we booked a visit… but had to move the visit because of a conflict with an appointment for Angelica. I’m not usually the one that would organize this stuff, but we are all giving-and-taking. the appointment got moved to Thursday and i made sure to take the last appointment slot at 6:00 so I could make it and I JUST made it after driving ALL day.
The receptionist looks at me blankly and says “I don’t have your kids booked today”. ???
It seems that NEXT Thursday they are booked and that detail was overlooked in the conversation between Angelica’s doctors and me taking the call from the optometrist’s office and trying to remember all the details for everything until I could write it down…
I sigh and realize that I will have to do this trip again next week and that… I have one too many things to juggle.
It’s hard to believe it’s been over a month since Judah Zane joined our lives.
My Sweet Boy,
You are an amazing addition to our family. I am so thrilled that you were chosen for us. I still feel like we hardly know you and yet I can’t imagine you not being a part of our family. You fit in perfectly with all the crazy, passionate, vocal, chilled-out, intense rest of us.
In just the last week, you have managed to go slight;y hoarse from screaming when we don’t pick you up fast enough. You are so relaxed and laid back and easy going, and then……..BAM – there doesn’t seem to be any wind up or lead up time, you just go from happy to wicked pissed, and as soon as we pick you up, you’re okay. It’s equally amusing and slightly horrifying. I wonder if this will carry on or if you’ll figure out that we’ll come even if you just start to get upset. I figure that as the youngest of 5, you just want to make sure your voice is heard?
You were 13 pounds 12 ounces at your last weigh in almost 2 weeks ago. I wonder what today’s visit will say that you weigh. My arms and shoulders can totally testify that you’re even heavier now than you were then. At some point I expect to have some serious “pipes” as you don’t like to be put down and yet you weigh a ton…..You definitely like to eat. And yet, with all that you eat, your night times are so SO sweet and for that I thank you and am willing to carry you to the end of the earth.
When you fall asleep around 9pm and then typically only wake twice in the night to nurse, I can forgive you much…..heck, there are many nights when your (almost) 3 year old brother is up that many times (or more….)
I love to look at your little ears and your sweet head, your chubby thighs and to see you wrap your sweet little fingers around mine. All these little parts of an amazing whole….you complete our family, little one!
As I mentioned already, you love to be cuddled and held and you could sleep forever as long as someone is cuddling you close. You are so “squishy” and there are time when my heart wishes I could express the depth and fierceness of my love, and yet no words seem adequate enough and so I just hold you, whisper words of love and pray that the magnitude of my love for you is just “known”.
This is a crazy, CRAZY time to born into, and I pray every day that I’m able to take each and every moment and love each and every one of you kids like it were my last day on earth. I want to live and love and laugh with no regrets and I want to pass that same desire on to each and everyone of you.
Time seems to fly by so fast and before I know it, you’ll be as big as your older sister….it seems like I just blinked and now she is a teenager…..
…and so I hold the memories of these days close to me. Days when you were tiny (comparatively) and slept and fed and cuddled and smiled because of the gas bubbles. That one seems to carry on though….your brothers both take great delight in their gas escaping both ends and I’m sure you will continue to find joy in that as well.
I believe these feet will take you place in your life that I could only dream of. You are created for greatness, my son. I believe this strongly and I will continue to encourage you walk the path that you are destined for, whatever that may be.
Welcome to our lives, my sweet boy. Welcome to this world. It’s gonna be a better place because you’re a part of it.
That is the day that Angelica was born and when Jon gave Geli her first bath.
Some wise man talked to Jon about giving the babies their baths as it was a way that “he” could bond with his babies..ya know, seeing as he didn’t have boobs and wasn’t able to bond with them the same way that I could…..
And so, he jumped right in there and he did most, if not all of the baths for our kid when they were babies…..I find the baths to be a bit scarey as the babies are a bit like rubbery wet noodles……
This whole situation has required some give and take on our part and while we’ve been separated as a family for almost month…..some things are too important and can have the extra effort given to make them happen.
And so,getting back to the whole first bath business….
I had to beat the nurses at BC Women’s Hospital back with a stick as they kept offering to get a bath for me to bathe Judah in and I wanted to give Jon the opportunity to give Judah his first bath. (I didn’t really have to beat them off, but they did offer a bath a few times and I very politely declined.)
This last Thursday, on Judah’s 2 week birthday we were at home all together and we whipped out the baby bath and Jon was able to carry on the tradition……HOOOOOORAY!
Judah’s a pretty chilled out little dude and I wondered how he was going to handle his first bath. All of our kids have had different reactions to the bath. Some loving it, some hating it, some screaming the entire time and some just going to sleep in the middle of the bath.
Judah just stayed pretty true to his nature and just laid there all relaxed while Jon bathed him. No screaming, no flailing, no startling, not bothered at all, one bit……
It was a bit of a family affair. I think that if Jeremy had been able to fit that he would have jumped into the bath with the baby. All of our kids are quite the water bugs now and if Judah’s first bath is any indication – he seems like he’ll fit in with the rest of the family quite nicely.
I’m just glad that we were able to carry on this little tradition. It’s not that big of a deal, but sometimes it’s the little things that make a difference. I know that Jon was happy that we were able to make this “first” happen.
You might think that caring for a newborn in a hospital shouldn’t be that difficult and well….its not difficult – it’s just challenging.
Either I hold him or I put him down on my cot or Geli holds him, but really I don’t like to let him cry or fuss too much as I don’t want to bother the nurses or any of the other patients on the ward and so the majority of the time…..I’m holding Judah.
Which, to be honest, I’m not too upset about, but it really means that there is almost nothing that I can get done that requires 2 hands…..but I am getting really good at doing mostly everything with one hand…..mostly everything. Somethings just require focus and concentration and we’ll just leave it at that………
About 2 weeks ago, Angelica did something to her left hamstring and it spasm-ed and pulled all tight and totally confused the Dr’s and nurses and physio-therapists……everyone was wondering if it was something related to the chemo meds, but in the long run…we’re thinking muscle spasm as it’s been able to be worked out…..mostly!
The physio-therapist came and suggested some exercises…..this was about as far as she could bend it….
And so as not to hurt it more and so that she wouldn’t torque her body trying to compensate for the hurt leg, they suggested she use crutches for a while….
I will admit that I was a bit worried as she had been kind of dragging the leg like it was dead or like she was the Hunchback of Notre Dame…..but the crutches have been given back and aside from a little bit of tightness which she is working on stretching out….it’s almost as good as new. We are so thankful that wasn’t a big deal.
The nurses here seem to be so amazed at how independent and responsible that Geli is. She is really taking responsibility for her own health in so many ways and gets up and makes her own meals when she is hungry….that’s the one that seems to really amaze people. I just figured that it was normal for a 13 year old girl to know how to cook…..seems normal to me, anyway?!?
She made perogies the other day….her favorite, but because her body is currently in a diabetic state – they are not something she can have very often…which is very sad!
Most of the time when I have to run to the toilet….Geli holds Judah and is typically able to get him to settle down if he’s a bit fussy. She’s an AMAZING big sister….
Last Thursday was the first time that we had all been home together as a family of seven….since our lives changed on June 16th…..it was so nice to all be together, even if only for a few hours.
Headed Home in the Van…Dad had run to Starbucks quickly!
Geli really wanted to have a barbeque lunch and asked that we pick up some chips because you can’t have a barbeque without chips…..
She took her portion and then Siah claimed the rest of the bag as his own and valiantly fought off having to share with the other kids….little brat!!!
Jeremy worked on keeping things real by parking his butt in front of the Computer pretty much the whole time….
I don’t know how we missed out on Xani, but she was there….I promise!
and Nana got in some sweet baby cuddles….It was a pretty hot day….hence the naked baby!
The time flew by WAY TOO FAST and we hd to head back into the hospital. It was so nice to “BE” together in the comfort of our own home…..and hopefully we’ll be back together again very soon!
And now, my littlest baby is starting to fuss and I must go and get him….
Alright, so there is no way that under “normal” circumstances that I’d have ever gone this long without posting a ton of pics of our newest, sweet, little man, but these are far from “normal” circumstances.
We have TONS of things to share about Geli, about Judah, about our family, about many other things; but…….it all requires energy and time….and those are two things that we seem to be running short on these days.
I’ve uploaded a bunch of pictures to Flickr and will direct any of you (Mum C – this is for you specifically) there for cuteness overload. You can click the link or click on any of the pics…I’ve not edited any of them….just threw them up, sorry! It’s that whole lack of time/energy thing……….
Judah is a doll. A GIANT doll, but a doll, nonetheless.
He was 22 inches long at birth, and weighed in at a healthy 9 pounds 15 ounces. He managed to lose almost a pound and went down to 9lbs 1 oz, but as of Tuesday (day 5 of life for him) he was back up to 9 pounds 11 ounces and my midwife is coming by this morning and figures that he’ll be back up to his birthweight by today. Apparently I’m feeding him straight cream….lovely!
He had a bit of jaundice, but I think that’s because he was quite tongue tied at birth. We had a pediatrician at Women’s come at look at him and he was able to clip his tongue and that made nursing MUCH easier…..and the jaundice is fading quite quickly.
For whatever reason, his latch on my left side has been a bit funky and I’m in a little bit of pain, but it’s getting better now…..
He doesn’t cry often, but when he does, he has a HUGE scream, which is so different from Siah. I figure as the baby of 5 kids that being able to make yourself heard and understood is not necessarily a bad thing.
He’s currently sleeping from feeding to feeding through the night, except for the first night home when he was awake and/or feeding from 3am to 6am….and then Siah woke up at 6am….to say that was a rough day as far as sleep deprivation would be putting it mildly.
I’ll try to find some time to type up the birth story for anyone interested. Things were so far from what we had thought or planned and yet in spite of it all….it was a lovely, amazing beautiful birth that I will forever remember as quiet, peaceful and a calm moment in the middle of all this chaos and pain and confusion……it was the calm within a storm and even though I was so worried that it would be a horrid experience, it was anything but….. It was absolutely lovely!
I don’t have as many pics of his first few days as I’d like but in the grand scheme of things…….it’s okay. It is what it is, and we’re carrying on.
I have good moments, and sad moments and better moments and its all okay! Everyday brings us all closer to the day when we’ll be reunited as a family and for that we are thankful. We are all struggling through this in our own ways, but we are being carried throughout this and we know and sense this. Peace that defies common sense within the swirling chaos. It’s an amazing thing!
I hope you enjoy the pictures and I’ll try to get up more.
Thank you to everyone for your understanding at this time.
I know that Jon’s mentioned a few times about not visiting if you’re feeling sick and I’m gonna take a minute to be really clear and blunt….
Normally, when someone is sick or when you have a baby it’s customary for everyone to want to come and see and congratulate or to visit and cheer you up when you’re not feeling well……and in this case, we are asking you all to do the exact opposite.
If you are feeling even the slightest bit “off” or have a cold or cough or you think that you might not be feeling well or EVEN…..if you have been in close contact with your child or partner who’s been sick or you’ve visited your mother who’s had a cold or a fellow employee has been sick…..please PLEASE!!!!!! Don’t come and visit us at the hospital or at home….
Send your love, send your prayers, but please don’t share your illness.
Angelica has NO way…absolutely no way of fighting infection or illness of any kind. So, if someone who is just starting to feel off, but still feels fine visits her, she can’t fight off whatever you have……..and could get very sick.
The same goes for us….if you come around us (the rest of the family) and we get sick, then none of us can go in and visit her…..and just being honest…..that would be very, VERY, VERY hard on all of us.
So please, we’re asking that unless you are perfectly healthy and know that you’ve not been in contact with anyone who is sick, to please stay away until you are certain that you are not able to spread any illness to any of us.
This is not a forever thing. This is a right now….for the next month or two, kinda thing………her counts are the lowest they are going to be over this whole process right now and so we’d like to make things as easy for us as possible and staying healthy is a HUGE one.
Thank you for your understanding in this matter…..we appreciate your prayers and love and thank you for working with us in this.
I know it defies every “normal” thing that we want to do at times like this, but….it’s only just a season. And to everyone who has mentioned that they haven’t come because they’ve not been feeling well……THANK YOU! Honestly, we thank you more for not coming. It’s HUGE to us that you care so much that you’d put our health before your desires to comfort and love.
Angelica has already had her bone marrow biopsy and is just now (at 12:30ish) getting the chemo meds. We’d love if you’d stand with us that the meds would do thier job and kill the cancer cells, but that she’d be strong physically and not get massively sick as a result of the chemo……we believe in miracles and expect to see great things come out of all of this.
We don’t believe that “God only gives what you can handle” as that implies that God did this to her and to us…..but we do believe that even though bad things might happen, that He is there with us and that we will see good things in the middle of all of this….and we have…..
Your love and support has spoken so much to us through our short time on this road and we know that we have “family” all over the world standing with us, loving, praying, supporting us and carrying us through those times when we feel tired, exhausted and overwhelmed…..to know that we have such a solid support base under us is AMAZING!
In the middle of the tears, and the laughter and the pain and the joy……we can feel the strength of love and it carries us and lifts us up………
I’m sitting in my room over in BC Women’s Hospital on the labour & delivery ward.
Judah and me are hanging out over here, while Geli and Jon are down the hall at Children’s, in the Oncology Ward.
We’ve been over with Geli for a good bit of today and then resting while she was gone for her Bone Marrow biopsy and Spinal Fluid Tap and right now we’re just hanging low over here for a moment.
Today has been an “icky” day for Gelica and a “crying” day for me.
Between the excitement of the past few days, chemo treatment, tests, and wacked out sugar levels, Angelica had a barfy, yucky, nasty day……..she’s had no fever though and right now, her blood levels are within normal range – so for that we are so SO thankful.
I’m hitting the end of Judah’s second day of life and facing the lovely hormonal changes that brings. Add on top of that – very little sleep, a leukemia diagnosis, a week of stress and the looming unknown and you have a sure fire recipe for tears.
I’ve cried off and on today and feel some of the built up pressure has released, but I still feel like I could use a really good cry. Just to release all the pressure that’s built up since my last good cry about a week ago.
I hate this. This is nothing that I ever imagined for my daughter, for our immediate family, for our extended family…….it was unfathomable, until now………
I hurt for her. I hurt for Jon. I hurt for my other kids. I hurt!
I look back at some of the little life lessons that I learned over the last year and see how I can use those lessons in my life now.
Probably the biggest one with the HUGEST impact on me………..I learned through this past year in my exercise class!
Stay in the present!
You can handle just about anything that’s in front of you right now. It’s when you race beyond into the future that you can be overwhelmed. I can handle today. Tomorrow I will have the strength that I need to get through that day. If I try to imagine or figure out or plan for the next week or so, or month or 6 months from now…..its too much! The unknown is too great and overwhelming.
So today, I cry and I process and I hope and I cry some more.
In the middle of my tears, I am aware of some blessings. I am off my feet, even if they have swollen up to elephant size again. I have some amazing quiet, one on one time with my newborn. I’m still with my “baby” even if I’m sleeping down the hall from her. We are being cared for and supported in so many amazing ways by so many amazing people. In the middle of all this chaos, I am blessed and I know it. That doesn’t mean I’m grateful that we’re walking this road, just that I can see some pretty rocks on the path in spite of the dark clouds and rain.
I’ll get through today and when tomorrow comes, I know I’ll be able to get through it as well.