Month: March 2012

The Ups and Down of Life

I feel so……so……so caught up inside myself.

There is so much going on and I don’t know where or how to unpack it all. I had a phone chat with our social worker from BC Children’s yesterday and kind of fell apart on her.

I’m tired. I want some help for the kids (and myself if I’m being honest) and “the help” (therapy type help) available, is at BC Children’s….an hour away from here. (We have no extended medical to help cover the expenses for other help and so we’d be paying out of pocket for other help, which we may just have to do…..)

There is a sibling support group that is just about to start, but…..it’s on Thursday afternoon’s for an hour and a half FOR THE NEXT 8 WEEKS.

That’s not really very helpful. If we missed traffic (which would be a miracle – we’d be in traffic for at least one way), we would be driving for 2 hours to go to a meeting for 1.5 hours. And I’m not sure what Geli, I, Siah and Judah would do while the older 3 were in the session. Then we’d be leaving at dinner time (and sitting in that lovely traffic I mentioned) all the while hoping that the baby wouldn’t fall asleep in the van so that he wouldn’t be up until midnight. There would be dinner to figure out and homework to work around and well….it’s just more of a problem than a help…..

I am already running below empty and I can’t fathom adding 8 weeks of that stress into our lives….so where does that leave us………?

Not in a great place, that’s for sure.

I know that we need to get beyond “this time” and that things will look different in a year from now and hopefully things will be easier but I am so tired and worn out, I’m not sure what shape I’ll be in, in a year from now. We’ve been looking forward to “this season changing” for what feels like a very long time and it’s all seeming so very surreal and even unattainable at very low times. We have to believe that things are not always going to be this tough. We are not looking forward to the future as a “magical time of amazing-ness” but we are trying to hold onto HOPE with what little strength we have left, but sometimes, even that feels so very difficult to do.

Our social worker asked me what things I could take off my plate so that I wasn’t so overwhelmed and to be honest…..I have no idea. I’m already doing the least amount of housekeeping that I can and still have us be functional. And that right there…..is so tough to deal with. I like a clean, neat and tidy house. I feel like I’m drowning….not even like I’m treading water anymore, but that I’m sinking deeper and deeper under. I have no time or energy to keep on top of all that it takes to keep our family running smoothly and my “coping mechanism” is to “fill another box” with the crap that gets piled up on my counters and then take it down to my bedroom.

It’s definitely not a cool way to deal with things. I think I have 6 boxes downstairs with “crap” that needs to be sorted through. It’s all I can do to stay on top of my laundry and well….besides the fact that I have the worlds smallest laundry room and 7 people’s clothes and towels and linen won’t fit in it…..we just need the clothes to wear. The boys only have about 3 pairs of pants each and depending on how messy they are we could plow through 2 or even all 3 of them in a day. NOT COOL, boys! NOT cool!

Obviously we have to eat and trying to feed a family of 7 economically, while eating a gluten and dairy free diet….well, it’s extremely challenging and sometimes I just wish that we didn’t have to eat.

A significant portion of my time is spent homeschooling Jeremy and breaking up fights and squabbles between the two little boys. A few people have asked me if that’s something that I should off load and just send him back to school. Maybe even a different or new one……to me, this is not even an option. For the first time in his life, Jeremy is EXCELLING in school. He hasn’t gotten a mark that’s been less than an “A” for 2 months now. He feels smarter. He’s ACTUALLY retaining the information that he’s processing. If he doesn’t LOVE school, he at the very least enjoys it, now. As much prep work as it is for me…..and let me tell you, teaching ONE CHILD has a significant amount of prep work and time spent overseeing what he is doing…(I can’t fathom teaching 30+ kids with more than one of them with Learning Differences or other social issues)…..this is something that I believe is CRITICAL right now. I firmly believe with all my heart that Jeremy is learning valuable LIFE SKILLS that will impact him for the rest of his life. To cut this time short, would be devastating, in my opinion. Even moving him to a new school…..he doesn’t “YET” have the skills needed to make a change, and I believe that he would end up in the same position that he was in….behind, feeling stupid and bullied……

So basically, I get up in the morning…….. I sort of teach school. I try to care for my little boys. I attempt to feed and clothe the family. I clean, and it is an extremely loose interpretation of the word, the house and then it’s bedtime…..

For “ME” time….I “try” to work out 3 times a week and while that’s a good thing…I feel like it’s an hour and a half of hellish torture that I enjoy once it’s finished.

Regardless……something has to change, I’m at a breaking point….I’ve been thinking about getting someone in to help out for a few hours a week….maybe twice a week….to help with the little boys and maybe some housework….I dunno….I’m not sure where to find someone, or how exactly to go about it all, but I have been thinking about it….so….that’s a start, right?

Jon and I are missing each other….it’s been so long since we’ve had any time to just “be” together and that’s tough. Even our evenings are crazy. The boys have been particularly needy over the past couple of weeks and haven’t been settling until after 9pm even though we’re starting the bedtime routine at 7:30pm….I dunno if they’ve been feeding off the extra stress……or what the issue is? Whatever it is….it’s not cool!

We did, however, get the chance to get away as a family. Last weekend, we were able to go to a cabin down at Birch Bay for two nights and it was a wonderful time away. It wasn’t so much of a rest….as it was a change. A chance to get away from the house and feeling a need to clean and tidy. The kids played. Nothing “could” or “had” to be done….probably the biggest downfall was that we wanted to pick up a few clothes while we were down there, but again…..shopping (or pretty much doing anything) with 5 kids is…..um…..interesting…..and we didn’t get done what we had hoped and that left some of the family feeling like they were disappointed. We should have just gone down and not hoped to pick up a few things….that would have at least not set us up to fail…..

DSC_0179

that’s Jeremy in the bottom left of the picture

I have a TON of pics from our time away and I’ll share some of them in the next post. It really was a beautiful place and right on the beach…….like RIGHT ON the beach. The smell of the air, the sound of the waves, the seagulls crying…….it was amazing. Truly, truly amazing. I love the beach. It really is a “Happy” place for me. We are SO THANKFUL to the family that made it possible for us to get away. It was INCREDIBLE! SO, SO INCREDIBLE!

Through The Valley of the Shadow of Death

Amplified Bible (AMP)
Psalm 23
A Psalm of David.
1THE LORD is my Shepherd [to feed, guide, and shield me], I shall not lack.

2 He makes me lie down in [fresh, tender] green pastures; He leads me beside the still and restful waters.

3 He refreshes and restores my life (my self); He leads me in the paths of righteousness [uprightness and right standing with Him–not for my earning it, but] for His name’s sake.

4 Yes, though I walk through the [deep, sunless] valley of the shadow of death, I will fear or dread no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort me.

5 You prepare a table before me in the presence of my enemies. You anoint my head with oil; my [brimming] cup runs over.

6 Surely or only goodness, mercy, and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place.

This passage keeps running over and over inside of me. Different aspects of it hit me at different times of the day and the night.

The Lord is my Shepherd. He will feed, lead and guide all of my and our steps. I will lack for nothing. He provides a place for me to lay down and be at peace and rest. I can feel safe and secure, knowing that He has made a quiet, peaceful place for me to relax when I feel tired or overwhelmed. I can be still knowing that He is in control and caring for me. He refreshes me and restores me when I feel worn down and so tired and so very, very broken. He does lead me into places of uprightness and right standing with Him, because He loves me and Geli and us. Even though we may be walking through a very deep, dark valley and may feel like the shadow of death has touched us with it’s evil and destruction – I WILL FEAR NO EVIL. I will not fear anything because HE IS WITH ME, WITH HER, WITH US….every step of this journey. He will never leave us nor forsake us. He protects us and guides us and in spite of all of our pain, or hurt or confusion or anger – HE COMFORTS US! He provides for us in the middle of all of this garbage. In spite of all we have gone through, in spite of all we are are going through….my life is full of love and joy. Goodness, Mercy and His Incredible Love is with me every moment of every day and I choose to live within His LOVE and PRESENCE all of my life. Nothing shall sway me from this, not life nor death.

Angelica is on the list to get new knees. In all actuality, her shoulder is WAY worse than her knees, but she doesn’t walk on her shoulder. And so, from her standpoint, dealing with the pain in her knees is a higher priority.

I’m very aware of exactly where we are at, and we are taking the steps that are medically necessary to replace her knees, and her shoulder will be shortly behind that. We believe that there is SO MUCH GOOD that the medical profession can offer to help us out.

And in spite of all of that, I am praying for Angelica’s healing.

I would love if if you would stand with me and support her and us with your prayers.

I believe that….. “Where two or more agree concerning anything, it shall be done!” and so I’m asking for two or three….or many, MANY MORE…..to stand with us to declare healing for Angelica.

Looking at the reality……we need a miracle. Aside from the replacements…..that’s the only other possibility. I’ve seen the pictures of her shoulder bones and the left one has collapsed. There is no natural possibility for healing or regrowth outside of a miracle.

And so, I’m asking, praying and believing for a miracle.

I would like to invite you to join with Jon and I and more importantly Angelica as we pray and believe for healing and new bones for Angelica.

I realize that to some of you who don’t believe, this may sound crazy. And maybe, I’ve gone crazy….there has been a whole lot of stress over the past 2 years. But………in my mind, as much as it might be good to have knee replacements instead of pain and eventual immobility for the rest of her life……the best thing would be to have new, healed and restored bones. Until the moment that they cut her open to put new knees and other joints in….I will pray and ask and believe for God to work a miracle in her life and in her body. At this point, we have nothing to lose….

Angelica doesn’t finish treatment for Leukemia for another 6 months. The list for new knees has a 6-9 month waiting list….and so the timing works out well for her to be on the list starting now.

She starts physio and OT on Monday at GF Strong.

For those of you joining us in prayer, here is a list of things to pray about:

1. New, Healed Bones for Angelica. Currently they have said that her knees, shoulders, hips and elbows are showing signs of bone death….but we want everything in her body and mind to be healthy!
2. We are all feeling quite emotionally tired, fragile and broken. So prayer for strength and comfort, peace and joy.
3. Geli is so tired of feeling physically exhausted all the time. She’d like to have energy to be able to enjoy life.
4. Geli is starting physio and we want her to be able to build as much strength in her body as possible.
5. Prayer for sleep….restful, peaceful sleep for everyone in our family.
6. Strength for us all to be able to keep going on in spite of how tired and worn down we are feeling
7. Protection for our family that each and everyone of us would be safe and healthy
8. We have had so many things break on us recently…our microwave, my laptop, our toaster over, our scale, my breast pump, and I know there are more that I’m not remembering, but we’ve had enough…..this all needs to stop. It’s a drain emotionally as well as financially!
9. PEACE!!!!!! in every area of our lives and minds and bodies……for all of us.
10. Employment – Jon’s job is very uncertain right now. He is a contractor and currently working for a GREAT COMPANY, working amazing flexible hours and making enough to support our family. His contact is up as of March 31st and his boss has applied for his contract to be extended but the boss’s boss has not not yet signed off on rolling over the contract. Jon would love to actually get hired on full time at this company, with benefits and a regular salary, but even just a contract renewal would be amazing.
11. Mini-Vacation – Personally, I’d really love to be able to get away as a family. Somewhere not too far away, but where we can relax and just escape! I’m just gonna be specific and say that I’d love to be on a beach somewhere to hear the waves crashing and smell the salt water and feel the wind on my face, but honestly….any where would be nice.

Thank you for all your support. Thank you for your kind words. Thank you for your encouragement. Thank you for your prayers. We need them now, more than ever.

Normal is gone……and we grieve

I lay beside her on the bed tonight, cuddling her…my arms wrapped around her while she sobbed and wailed as if her heart had broken. I held her and whispered quietly, my lips against her shoulder, “It’s okay to cry. Just let it all out.”

The sounds coming from the very core of her….so hurt and wounded and broken and tired…..so very very tired.

She cried until she was spent and then she lay, breathing jerkily, as she tried to settle.

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We went to see the Rheumatologist early this morning. He gave us news that no one wants to hear. Especially not a child……

Double Knee Replacement!

Shoulder Replacement!

Most likely looking at bone death in the hips and the elbow and who knows where else…..

Possibly hip replacement in the future…… who knows about the elbow.

He would need to look at the previous X-rays and we’ll probably need more in the future.

It’s a lot to deal with.

I’m not coping very well. She’s struggling. We are all struggling.

This is tough.

So painful.

She’s looking at knee replacement surgery after treatment ends in 6 months.

She’s already feeling like Grade 8 and Grade 9 have been taken away from her by cancer and now to hear that grade 10 will be taken up with bone and joint issues…..

This just feels like too much.

For all of us.

We are hurting and wounded and broken and in the moment, it feels impossible to think about how we can possibly recover from this.

I try to put as many positive spins on this as I can. To think about those we know who have overcome great obstacles and even faced death and now are thriving, but in the moment……

It’s overwhelming and we cry…..

And we hurt and we wonder how we will carry on and yet…….we must!

We will get through.

Nothing will ever be as it were.

Our old “normal” is gone……never to be found again and we grieve. We grieve hard!

We must find a new normal.

Again.

It’s getting harder and harder to think about creating new normals.

It’s getting harder and harder to try to create new normals.

It’s getting harder and harder.

It’s just really hard!

Tonight is a bad night.

Hopefully, tomorrow is better!