Tuesday, March 11, 2014

Heaven and Back Again...and again and again

Yesterday we took Grace to the park. Not the Children's Hospital playground, but a real park. I was terrified at the thought, but not only did Grace have cabin fever, her energy levels were up and I felt that a lot of her anger would heal if she could be active and have a way to challenge herself and overcome. When she was younger and having a bad day I always found the park was a great way to build up her self esteem and get her back in the happy zone.

I asked around and got recommendations for a very secluded park (for germ avoidance), that was shaded (chemo kids burn easily) and that was small (so she wouldn't wear out too easily or hurt herself). We did a test run without friends or onlookers so we could see how she would do.

She was so happy. She had to hold all the railings and had to slowly pull herself up every step but she did it. She had to wear a hat and sunscreen but she did it. She had to be spotted during every climb so she wouldn't fall but she did it. She had to sanitize her hands at every opportunity but she did it. And she did it with a smile.

She's been so easily frustrated by her brother lately but at the park they were a team, running from the mommy zombie. I loved seeing them playing together again, something they had only started before she got sick. I could see how proud of herself she was again.

It was absolutely heaven to me.

This coming Thursday we will access her "bumble bee" port again, which means she'll have to be more careful playing. I also think her platelets might be low since her lips bled a bit today (granted, it's very dry out) so that may mean a blood transfusion, which if that is the case both her lumbar puncture and AraC medicine could both be delayed. She's nervous about the "stinger" but I think it'll be much better now that she's been through it once already.

Also today she told me she's ready for her hair to grow back and when would that happen? Little statements like this always surprise me because that means she's thinking of these things but not letting on about it. I told her it was likely that she'd lose more hair before it started to grow back, but that it would grow back once the cancer is gone. This is only the second time she's told me that she's sad about her hair since losing most of it weeks ago.

Moments like that always bring me back to Earth.

We played a rousing game of "mommy-zombie-LegoMovie-escape-ninjas" today as I chased both kids around the couch. We played loud music, at which Grace raced off to put on her fanciest dress, and shoes and headband for some of the fanciest dancing you've ever seen. Today was a beautiful weather, flowers blooming, kids laughing, Grace smiling kind of a day.

I was back in heaven again.

Later I decided, as I was cooking and as the kids were laughing at Jake and the Neverland Pirates on TV, that I'm done with cancer. We had a fair run with it. It was hard, we learned a lot, we met new people, we did some meaningful things and now I'm ready to have the normal time we had today...everyday. No more 12 hour days at the hospital, no more spending hours confirming appointments, checking for prescription refills, packing and planning for Luke to be away from us, administering medicine and driving in rush hour traffic to the city two or three times a week. Today was nice, today is our life, and today is how I decided I wanted to keep it...and then I had to accept that I can't.

I was back on Earth.

When this all first started I was very unnerved by the fact I could be so happy and so sad at the same time. Or so angry and so at peace at the same time. But I am. And I'm both in Heaven and on Earth at the same time. And because God has made heaven His throne, and from there He rules over everything, I am at peace both in heaven and here on Earth.

Psalm 103

New Living Translation (NLT)

A psalm of David.

Let all that I am praise the Lord;
    with my whole heart, I will praise his holy name.
Let all that I am praise the Lord;
    may I never forget the good things he does for me.
He forgives all my sins
    and heals all my diseases.
He redeems me from death
    and crowns me with love and tender mercies.
He fills my life with good things.
    My youth is renewed like the eagle’s!
The Lord gives righteousness
    and justice to all who are treated unfairly.
He revealed his character to Moses
    and his deeds to the people of Israel.
The Lord is compassionate and merciful,
    slow to get angry and filled with unfailing love.
He will not constantly accuse us,
    nor remain angry forever.
10 He does not punish us for all our sins;
    he does not deal harshly with us, as we deserve.
11 For his unfailing love toward those who fear him
    is as great as the height of the heavens above the earth.
12 He has removed our sins as far from us
    as the east is from the west.
13 The Lord is like a father to his children,
    tender and compassionate to those who fear him.
14 For he knows how weak we are;
    he remembers we are only dust.
15 Our days on earth are like grass;
    like wildflowers, we bloom and die.
16 The wind blows, and we are gone—
    as though we had never been here.
17 But the love of the Lord remains forever
    with those who fear him.
His salvation extends to the children’s children
18     of those who are faithful to his covenant,
    of those who obey his commandments!
19 The Lord has made the heavens his throne;
    from there he rules over everything.
20 Praise the Lord, you angels,
    you mighty ones who carry out his plans,
    listening for each of his commands.
21 Yes, praise the Lord, you armies of angels
    who serve him and do his will!
22 Praise the Lord, everything he has created,
    everything in all his kingdom.
Let all that I am praise the Lord.

1 comment:

  1. Such a poignant post. So wish you could have heaven on earth, all the time. You all deserve it so much. Precious Grace deserves that sweet simple childhood she once had. And I wish you all the peaceful sleep and reckless abandon you once had. Life is complicated now and so much hinges on even the small decisions. Continuing to pray for the strength, faith and courage you need to do all that is required of you. May God shelter, comfort and encourage you all. Much love.