Mon 16 Apr 2007
We Love You Long Time
Posted by Jane under Updates
[15] Comments
We ordered chinese take-out last night. I always open my fortune cookie even though I rarely eat it. And even though I put absolutely no stock in anything found inside, I do usually glean something wise or at least ironic. And my lucky numbers for the week.
So I guess I was looking for something eerie like, “Your daughter will live long and prosper.” Or something way off and laughable like, “You will take a long trip to a sunny destination.” Instead, my fortune said, I kid you not, “Tyrants have not yet discovered any chains that can fetter the mind.” Wha?
I think this is meant to reassure me that although my free will may be compromised by some evil dictator, my mind will always be free to think any and all crazy types of thoughts it wants. Yippee. I think I’d rather get the fortune that says, “Scientists have just discovered a drug to fetter the mind!”, then I could actually sleep at night.
Yesterday I met for the first time with a 22q11 support group in my area. I have been looking forward to it, and dreading it. As expected, it was good to meet other moms who are making peace with this diagnosis and also really scary to be in their company. I like to connect with people, hear their stories, ask big questions. But the answers to my big questions left me with a lot of fear, and more questions. Maybe I should stop asking questions.
When Andy and I talked last night, we were surprised to find that we’ve both been entertaining some pretty dark thoughts. Warning: Some of these thoughts are not warm or fuzzy, please do not freak out and call the authorities, they are just thoughts. For instance, I left my meeting wondering if maybe someone else could take care of Ramona until we know what’s going to happen to her. Or wondering if it would be best for all of us, Ramona included, if she didn’t make it.
I think that is my overwhelm and fatigue talking. Oh, and grief, which makes you a whack job. I also think that now that Ramona has stablized somewhat, I am spending more time thinking about what this all means for me, and less time thinking about what this is like for Ramona.
So today I am reminding myself of the profound sense of pride I had a few weeks ago. That Ramona was strong enough to survive without any help for so long. That she was brave enough to make it through surgery. That she has what it takes to accept the help we are giving her now and is using it to grow. I am reminding myself that she is a baby and if we don’t fight for her and love her and keep pressing in to know her more, we are failing her as parents. I am taking time to cuddle her and thank her for teaching me so much about myself and about God. I am whispering “Grow!” in her ear.
And I am scared for her future and our family’s. So I am reminding myself that it will be a privilege to discover what challenges might be in store for her. Please pray that we will be able to take things one step at a time. Pray that we will not lose sight of what a precious gift a child is under any circumstances. Pray that Ramona will continue to amaze us with her strength and preserverance. This is a pic that Papa took, she loves him so much.
Love, Jane.
Sometimes when questions are so big and scary, it is a comfort for me to remember that God has better ideas about the best plan than I do. And he doesn’t mind letting me in on it, although usually not as quickly and clearly as I’d like.
But I, too, wouldn’t mind a mind-fettering drug every once in awhile.
Some people choose to go through life avoiding any and all big questions. You and Andy are strong enough and privileged enough to face these big questions about life and death at a relatively young age. May God see you though and may you guys get a break to relax.
Once again, heart strings being pulled (sniff, sniff).
As Little Man sleeps in the pack n’ play, I’m just amazed. Amazed at your tender and loving heart in the all this murky mess. Your capacity to love, to deal, to parent…it’s all an effective discipline in shaping your soul and forming the character of Christ within you. It’s inspiring to behold. You’re doing it Jane. Where do you think Mona gets her tenacious spirit? She is just so precious.
Keep on keepin’ on Mama.
Jane,
It was wonderful running into you at the park yesterday. You and your entire family have been deep in my thoughts and prayers all day.. and you will remain there for all the time to come.
You have a special light about you.. that is what made your shop so magical. And though I do not know you well, the glimpses I have gotten from this blog tell me that you and Andy are 2 hearts meant to be together, and those hearts are very very strong. Strong enough to endure the pain and confusion and anger and fear of the path you are on. But also light enough to see the joy of Simon and Ramona and bask in the love.
You are in my prayers for health, courage, strength and grace.
Melissa
Jane, you are an extraordinary woman. Like Keri said above, many of us wouldn’t even have the strength or the honesty to even ask the questions, much less admit the sometimes scary answers. I hope the love you have been surrounded by — from friends, strangers and those of us in between — is a source of strength. And as always, I will pray that the moments of joy outweigh the moments of fear. I know you don’t need my admiration, but you’ve got it, along with my love and support. It was so good to hug you on Saturday. You’re as good a hugger as you are a blogger and I am blessed to know you. Big love.
Jane,
Number 1, this super fab picture of Ramona makes me giggle with glee. Who would have thought that she would look so good and happy and share her love for you both in February?
Number 2, I continue to love your honesty and bravery. Your storm is mighty but those winds will not win in the end. You are strong in the Lord and I love you all.
Jen
thank you for being so real and honest with us (and the world I guess). I think you and Andy sound pretty darn normal.
Yep, Jane is a CHAMPION hugger…highly recommended!!
Jen’s comment made me think of a song I sang once. The chorus was:
Sometimes He calms the storm
With a whispered “Peace be still.”
He can settle any sea,
but it doesn’t mean He will.
Sometimes He holds us close
As the wind and waves grow wild.
Sometimes He calms the storm
Other times He calms His child.
I pray that God will calm you and your family in the midst of this storm. And I must say, what a beautiful smile Ramona has! She made me smile, too. =)
Jane
I was thinking about your support group meeting and am not sure I understand what left you feeling more anxious. Was it parents only or were kids there? Did some of the kids have serious disabilities? Is it the uncertainty over what DiGeorge means for Ramona vs other families?
Also, you mentioned a couple of days ago that Ramona is ‘behind’ in a few milestones. I find it so hard to judge what they are supposed to be doing now… what is it that the doctors feel she is not meeting right now?
Its fine if you don’t get time to respond. These are just the things I was wondering about.
Shannon
(who had a few more hours sleep last night and saw the therapist today and is feeling quite a bit better)
Jane,
I don’t think anyone would be surprised to hear that you have had dark thoughts during this ordeal. I’ve even wondered them for you, I’m sorry to say. The physical & emotional exhaustion you’re experiencing has to be monumentally overwhelming. We’re not only all here for Ramona, we’re “here” visiting this blog for all of you. Trying to give you strength & support where we can. I hope we do.
On the flip side, most of the time I find I get enormous strength from you. I am inspired and awed on a daily basis. I have laughed & cried. I’ve tried to be a better mother & wife. So thank you for that. Thank you for your honesty & openness. Thanks for letting us take this journey with you.
Molly
Hi Jane,
When we spoke on the phone I think I told you that I have not really been a part of our 22q support group yet, because there are some things that I’m not ready to deal with yet. I kind of feel like I can handle the medical problems right now, and I guess I will worry more about the other possibilities later. Sometimes it can be overwhelming.
I’ll be praying that you (and I) can take things one step at a time.
As one who has been with you for days at a time and sees your kind spirit moving through your day with your children, and sees you and Andy tirelessly and without complaint but with joy and great care tend to the different needs and wants of each child, I sit here at home at my computer with tears streaming down my face and I am humbled by your courage, Jane.
I surrender myself to the Power that has lifted you above the particulars of your humanness. Your willingness to disclose your darkest thoughts makes me realize that you are fully aware of the humanness of those thoughts and relegating them to that status as such.
I continue to learn so much from you and from Ramona as well.
All my love, Mom
On a lighter note, what is it about fortune cookies these days? They’re never fortunes anymore!! (Not to mention that, as you pointed out, the bits of “wisdom” aren’t really that inspiring, or even understandable).
Jane, I know there are days where you feel utterly powerless and feel like giving up. Hang on to your faith. Its your faith that guides you and whatever fate has in store for Ramona it is part of God’s plan. Believe it or not, from the outside looking in, you are a heck of a lot stronger than you think. God wouldn’t have given you this challenge if he didn’t think you could handle it. I truly believe that in whatever small way we are all a part of this plan. He has sent us to you in whatever form to comfort you and to help give you strength when you need it. God Bless and as always I hold you all in my prayers.