Wed 28 Feb 2007
Love Language
Posted by Jane under Updates
[12] Comments
I got a lot of calls today from folks saying, “Hey, I read your last blog entry, I hope I haven’t said anything to offend you”. Don’t worry, it wasn’t you! Even if it was you, don’t worry.
Andy and I aren’t the only ones who love Ramona. We’re not the only ones processing our grief. I know that each of you also loves Ramona and is mourning with us to one degree or another. Do we always say the right thing in response to your sadness? You don’t need to say the “right thing”.
I also know that you want to help. You want to say something or do something that will make this better for us. Thank you for loving us that much. Thank you for stuffing our house with food, our inboxes with emails and Ramona’s room with visitors. Your comments are always so welcome, even if they don’t scratch me where I itch on that particular day. I often find that if I revisit your remarks days later, which I often do for encouragement, they will strike me completely differently than they did on the day they were posted.
One of the reasons I love reading your comments is that I’m learning so much about the people I love. There’s a theory that people express and take in love in different ways. Some people give gifts, some give their time, some give words of affirmation, etc. This is something I think about a lot when I encounter difficulties or misunderstandings in my relationships. I might think, for instance, “Here I am pouring myself out by giving my time and showering them with praise, would they prefer it if I just sent them a muffin basket?”. So now I’m spying on you, taking notes so that if and when you need my support, I will have at least some idea of how to meet you where you are and love you in a way you can take in.
There aren’t words to express how our community of friends, family and some strangers has transformed this experience for me. I’ve often described this time as a nightmare that I can’t wake from. But in some ways it’s also a dream of what we can be for one another, what you’ve all been to me.
Thank you, Jane.
I love you Jane!
This community has been a God send to me as well. I am amazed and so grateful Ramona and you her family have mobilized so much prayer and focus and caring. It has been a powerful image of God’s hands and feet on earth. It is no surprise why we are called to live in community. In that context, as we bump into our own limits such as they are, we encounter either a space for God to fill or a human reaching out to care. Not that we always hit that mark as a body but it’s really cool when it does flow right. This seems to be one of those sacred times. It comforts me that there are so many hearts leaning towards all of you; to stand with you in the ache and joys of this time.
Hey and I’m on my way to wellville so maybe I can see you in a day or two. I hope it is soon. I won’t come till I am all well. It is hard to not be with you physically. I am grateful for the chance to share my thoughts with you all the same.
Peace to you tonight and looking for that girl to come home.
Kerry
I think we’re all going to say something stupid at some point. Feel free to tell me. It’s hard to know, when someone is grieving, what’s going to push buttons at a certain moment. But whatever I say, please know I love you guys and my heart is broken for you!
I think it really helps, of course, to be around people who have been through something like this — so I’m glad to see a few posts from people with DiGeorge kids who are reaching out to you. I hope you’ll find additional support through them.
I’m so glad a pink little Ramona is coming home. It gives me hope…but I also know she’s not out of the woods yet. We’ll continue to pray and walk beside you in this…
Love,
Karen
Sending you lots of love Jane. You mentioned before that getting Ramona’s room ready reminded you of being pregnant and prepping for her birth. Now that’s in my head, and I keep waiting to hear her “birth” announcement in the form of “she’s home!” I love that you got pink and blue iPods, and I love that American Idol found a way to sneak into your day (nota bene – I’m rooting for that little Sanjay boy, he’s precious).
On the more serious side – Ramona’s diagnosis has turned on the professional side of my brain (ouch) and my head is swimming with info. If you have any questions that I could help with (i.e. therapy, service providers, etc), let me know – again, we’re all dying to be helpful to you guys.
love,
m
Dear Jane,
Thanks for your above post. I told Andy last night that there were some things that have been on my heart as you have gone through the last few days….but I like many others was afraid that my butt would look big. (Andy thought your comment was hilarious…but then he will never have a big butt!) And since Charles told me when I turned 40 that I looked like a rock star…I am really trying to hold onto that image!
Anyway, I have been thinking about when Joseph was diagnosed with scleroderma when he was five. The two of us left the drs office that day not even knowing what Joseph had ….we knew it was something derma. But the Dr. was not helpful at all as to how this was going to effect our life. All I knew was that my little guy’s skin was looking funny and that movement on his left side of his body was not as it should be.
I went directly to the internet to find out if i could get more information. I did. And what I found our was not encouraging at all. I learned that most children with scleroderma have a life of chronic pain, other autoimmunes can be triggered by it, extensive therapy may or may not work…My heart was aching. Here was my son who had not even had a chance to play baseball and it was looking like that may not be a reality for a long time. And that was not half of the anguish I felt.
God was gracious in providing a dermatologist who could see Joseph within a week to confirm the rhumatologist’s diagnoses…this alone could have taken months and we had already waited 5 months to see the one Dr. The dermatologist was that one that who would monitor care and prescribe treatment.
What she prescribed was overwhelming….OT,PT, medication that if not carefully watched would ruin his liver, anti-infamatory drugs, vitamin D cream that cost $200 a tube… The good news from the Dr. was that Joseph did indeed have linear scleroderma, we did not have to do more testing and it was very unlikely that it would effect internal organs.
That day I left the Dr. seeing a picture of what normal would be for us….several therapies several times a week, lots of labs, long waits to see a specialist and since I was homeschooling taking my three kids to all of these things…special camps so Joseph could hang with kids just like him, and since the disease is so rare…no support groups for parents. Plus, whenever I told someone what was going on they told me of an adult who had died of sceleroderma. I wanted to scream….You are an idiot…Joseph has something completely different it will not effect his organs like it does in adults. But the looks of sympathy I got as people perceived what they thought normal and the end result would be made me really mad.
As time went by, we realized that J. would just need OT and then only once a week…he did need a splint for his hand but that was manageable. He tested negative for Celiac disease which several people thought for sure would be related…our entire family was tested and we were all negative. And I was able to find the Juvenile Sceleroderma Network on line.
We slowly settled into normal which was not as difficult as we expected. I believe that was due to all of the prayer.
Then we had to move, Andy had lost his job we were uninsured…buying $200 vitamin D cream was out of the question. So i settled for lots of sunshine. And prayed that Joseph would not get weaker. That progress would at least stay the same. It was terrible to think that we would not be able to take care of our child and that things would get worse. It was the biggest jump of faith for me….waiting three years before we had adequate health care to begin the process again.
We were able to start that again this past fall….the only thing I knew was that Joseph had scleroderma, I felt guilt because treatment had stopped, but I was optimistic because he could do the monkey bars and would have never been able to do that in Chicago.
Again…more specialists, therapy several times a week, surgery… now though we got to give Joseph, who HATES needles, a shot once a week. ARRRRG! And with every appointment I would be taking 4 children!
But the Drs. here are AMAZED. J. does not need surgery…in fact the surgeon was “thankful ” that I needed to make this special appointment. But it was really our Dr who felt it necessary. Therapy is only every other week and every week Joseph goes his strength is greater. His Dr. told me just last week that she has seen children on methotrexate ( the shot we give weekly) for years and it never has an effect.
I know this is long…but I hope in all of this there will be some encouragement for you. I also know that your journey ahead looks nothing like ours. I do ache for you.
But…I know from experience that not all of the information we get from Drs and the internet are going to be our experiences. I believe God plays a part here and that is so encouraging for me. Last week I told Joseph as we left the Dr. that God is doing something awesome in his body… and he said Mommy we already knew that ….now the Drs are seeing that.
There have been so many amazing things God has already done in little Ramona Mae. She is a rock star and so are you guys. I guess i just want to encourage you to hang onto all of those awesome miracles. I know for me Matt. 6:34 “Therefore do not worry about tomorrow for tomorrow will worry about itself” has been very comforting for me. Joseph does have a finger and thumb that are shorter on his left hand…but the Dr and the therapist have assured me that he will be able to play guitar:) And he does have growth plates there. I dont know what each day will hold and honestly I am always waiting for the shoe to drop and we will be catapulted into a different normal.
But God is at work in your daughter, in your family and even your friends. He will sustain you and I believe Ramona will continue to amaze!
Hang on! We are praying for a smooth transition home and are looking for more good news.
Love to you,
Nicole
Jane and Andy
Here is a prayer a friend sent me yesterday, just when I needed it;
“You say, “but HE Has not answered” He has. He is so near to you that His silence is the answer. His silence is big with terrific meaning that you cannot understand yet, but presently you will”
Love A Rose
hi jane,
i just wanted to tell you that i’m rather shy about what to say and how to say it – in other words, i often cover my big butt with a sweater tied around my waste – so i ususally refrain from posting my same sentiment “we’re thinking about you!” for fear of being uninspired and repetitive.
but i do check this site habitually during the day and am keeping you all in my (and my extended family’s) thoughts. i have a picture on my desktop of ramona so that each time i see it, i’m reminded to say a little prayer for you. and, when i go for a run and it gets hard, and i’m out of breath and i’m wanting to quit, i always think of little ramona and i offer my run and my heavy breathing up to god in support of her.
and i’ve sat here for about ten minutes (at work – tee hee) trying to find the right words to tell you what an inspiration you are and how important it has been for me to be a part of this community of well-wishers for you – but i can’t think of an eloquent way to say it.
love
peggy
Can’t wait to hear how homecoming was. Jane, you are a lovely writer! I hope you find time to do it when real life sets in. I hope Ramona and Simon are grooving to those I-pods peacefully today. And I hope you get some sleep.
what was that about a muffin basket?
Just kidding. We’re praying for the homecoming.
What beautiful thoughts, Jane. But that we could all be as attuned to the needs of others around us while fighting our way through such deep challenge.
I’ve got ants in my pants. Is she home yet???
Now I am crying…because it is in these moments of recognizing that our love is so fragile and our connection to one another so vital that God shows up….
I read once that “people is all anything is.”
When we feel good we lean on our strengths, our looks, our jobs, our paycheck, our car, our cooking…you name it…
but when we hurt it is the hand that holds ours and the prayers of the faithful that hold true currency….
you are loved…now and always…
AJackie