NaNi: Increasing in Wisdom (and Humor)

Naomi is now two and a half years old, in the stage many parents refer to as “The Terrible Twos,” although they haven’t been that bad for us, there is a big difference in Naomi’s willingness to obey. A few months ago, noticing her increasingly complex methods of disobedience, I remarked, “Your brain is getting bigger: You’re learning to sin in more elaborate ways.” She promptly reached up and felt around on her head. I had no idea she knew where her brain was. I wonder when she absorbed that. (We did teach her where her spleen is, because we have a friend who likes to tease the little ones by asking the location of the spleen, after the more traditional nose, ears, etc.)

Among the many things that amaze me is Naomi’s ability to completely ignore the commands we give her. She does so without giving the slightest inidication that she actually heard us say anything. She does this without regard to the urgency or volume of the command given. It’s amazing. I remember the other kids having “selective hearing,” but had forgotten how extreme it can be.

Not long after age two, NaNi announced when I got home, “My spankings all done, Daddy.” I was amazed. “You’re all done getting spankings?” “Yes.” “You mean, you’ve decided to choose to be obedient?” She replied in her sweetest, most singsong voice, as if to tell me how silly I was, “Oh, noooo.”

Another time, David was being verbally corrected for something he’d been told to do but neglected. NaNi grabbed a wooden spoon out of the drawer, held it in one hand while tapping her other hand with it, and announced with glee, “Spankin’ time!”

“By myself” and “I did it myself” have become her new mantras. She wants to do everything she can herself. She can crack and cook eggs (with supervision), helps out with the laundry, and pushes to do everything from pour a full container of juice (not a good idea) to dress herself (which she does very well, with about the same propensity of getting things inside-out as David exhibits).

She also likes to quote movies and other things we watch. Before her second birthday, she’d run around saying, “Demon llama! Aaaaaaaaaaah!” from The Emperor’s New Groove. Now she will come up with, “I’m a dirty skunk?!” (from Buggs Bunny), or “You little rascal!” and she can even do the entire “Niagara Falls” dialog from The Three Stooges. (Of course, she won’t do this on command, so I haven’t gotten it on tape yet. :: sigh ::)

She loves to sing. I am always moved when she sings, “I Stand in Awe of You,” a worship song. She’ll often be heard singing Sunday school songs or the songs in Chitty-Chitty Bang-Bang, which seems to be a particular favorite of late. NaNi dances, too. She loves to mimic the dances in Charlie and the Chocolate Factory or the “Me Old Bamboo” song from Chitty-Chitty Bang-Bang. She also makes up her own dances, including a beautiful one she does to the credit music of Finding Nemo. Her favorite thing to do is pirouette, and we have to keep a dress or two on hand that she can put on because she loves the way the skirt flares out when she does that.

One time when NaNi was preventing me from working at the computer, I asked her to go bother Isaac instead. She was very, very skilled at this. She started with sticking out her tongue at him a few times, with appropriate sound effects. When that didn’t produce the desired result, she walked over to him and started slapping him all over. Then she tried to push him out of his chair. This skill must be instinctive in little sisters.

Whenever we’re in the car, NaNi urges me to, “Do Burnout, Dad. Crash the cars!” (Referring to the style of driving in one of our favorite games for the Xbox.) Then she’ll add, “Pleeeeeeeease. Pretty pleeeeeeeeeeeease.” I can imagine the result, “But, officer, she asked so nicely …”

Before Isaac’s birthday, I was asking Isaac about who he was going to invite. I teased him about Amy, a girl who follows him around constantly. I asked Isaac if he was going to invite her, and NaNi interjected, “Amy not come, Amy’s a slacker!”

Naomi has also learned to use the computer mouse effectively, at exactly the same age Isaac and David did.

She nearly completely potty-trained herself mostly before her second birthday. (she still wets a bit, so she gets Pull-Ups; we’re not pushing the issue, especially as she can change her own Pull-Up.) And for some reason, she prefers to flush the toilet with her foot.

Someone taught her to ask, “Are we there yet?” That person will be found and punished appropriately. (For the record, NaNi claims to have taught herself that particular clause.) Generally, though, she merely asks, “Where are we going?” repeatedly while we are out.

She’s been riding a bike with training wheels for many months now, and has taken it on short trips (about a block). Saturday she wanted to ride it to the park, so I accompanied her. She actually rode the entire 1.11 miles all by herself, only stopping to throw some rocks in a puddle. Then she spent the next hour and a half playing in the park, and climbing like a monkey on a spider-web-resembling 7-foot-high climbing thing. Her upper body and arm strength has improved rapidly in the past few months, and it really shows in the things she is able to do while climbing. She can also now climb into the treehouse on our swingset, and is trying very hard to master the monkey bars.

I love all her jokes. Tonight she had a blue tongue (from drinking a blue-colored soft drink), and Nichelle commented, “You have a blue tongue, what have you been drinking?” NaNi’s laughing response: “Bath water.”

One of the things that most impressed and intrigued me of late was when she and Nichelle were talking about her third birthday (not until October). Naomi said that she wanted to invite Cody. Cody is Isaac’s friend, but NaNi is in love with him. Nichelle said that Cody was a little too old to invite to her birthday party, so NaNi suggested, “I’ll take off my head, and put Isaac’s head on. Then Cody can come.” She also tried to pull off her head, and later that night asked Nichelle, “Mommy, [will] you cut my head off?” What simple brilliance!

I shouldn’t be surprised at all this, though; after all, she is Naomi Wilcox.

Moving, walking, running … little things for some, but not to me …

How wonderful it was to wake up yesterday morning feeling no pain and being energerized!

This week in school for the elementary grades is “spirit week.” Each day the kids get to dress up according to the predetermined selection of ideas. “Hats, glasses and slipper day” was yesterday, and today was mixed-match day. Yesterday, I was able to run downstairs and lie on the floor looking for stuff under their beds, helping the kids locate items that were deep underneath. That, of course, is a big deal. And I was able to get back up without help. On Sunday night, although in some pain, I was able to help Isaac make a meat eating plant (pitcher plant) for costume day. You’ll see the outcome [Doug: Pictures coming tonight.] and he won second place, too. I was thankful that I was able to do that with him, too. David was a fireman, and he had the costume for that, easy work there. Today being mixed-match day, the kids needed assistance buttoning up their clothes backwards, wearing weird ties, suspenders and a bow tie, I believe from the 70’s. Ah, the ties may have been from that era as well. [Doug: I’ve kept a couple of boxes of “costume stuff” for the past nearly two decades. Weird ties are easy to find at any thrift store.] It was great fun. Doug did take pictures of their final results, and I’m sure will get the pictures posted soon. [Doug: Nag, nag, nag …] I’m still feeling well, too.

On one of the days that I was unable to get the kids from school, Isaac and David were eager to watch a new movie that Doug had bought for Isaac the night before, and Naomi joined them. John hung out with me, and we talked for—what I was amazed at—the entire length of the movie. We were just talking about a lot of things/issues. It was great to spend that length of time with him and hearing what God is showing him. What a blessing.

After Naomi got up this morning, I went and sat down with her in her room and just had a praise and worship time in song. I sing along with CDs that we have, but I haven’t just belted out song after song by memory in such a long time. How I long to be back in choir again and singing specials, but for now, I pray the songs continue to come back to memory again, so such a time or praise can be had again.

Something else I was able to do was play with Naomi yesterday in the backyard with her on the swingset/gym set with the monkeybars and “clubhouse.” She is now able to climb completely up to the clubhouse and get down without help. That part is at least 7 feet high. That’s pretty impressive climbing skill for a 2 1/2 yr. old. [Doug: You should see her climb down the center of the ladder assembly; she hoists herself on both arms, legs flailing, and pretends-screaming.] Naomi also for the first time yesterday used the monkeybars. I was under her, of course, for assistance if necessary. She was able to do three rungs by herself. Oh, she also scales the poles on the indoor gym equipement we have. Her upper body strength is amazing, too. I think Doug took pictures of those. [Doug: I have video of the clubhouse climb, but no pictures.]

Doug again, has been amazingly helpful and quite busy. Doing all he can for us. He joked with me that God has blessed me with all the grace. He’s given it to each of us in different ways and I can see that in the kids and in Doug. They have each had to go through a lot, and with more to come, a couple of good days so far, but…. Many people will say, “I don’t know how you can do it,” and that can be said to each person in my family—but the answer is the same, in my eyes anyway. It’s by God’s grace and that alone. For the kids to go about and do things, at times for themselves or just with little help, not having a Mom to do the typical Mom things I once did, can be hard, and the same goes for Doug. The things he’s taken on and does great with are excellent.

This past Saturday, Phil was up visiting and he and Doug went out in search of a new TV. [Doug: We weren’t really searching; I’d already done the research via Consumer Reports and a number of other online product reviews. Conclusion: The 34″ Sony WEGA HDTV is amazing, and, although smaller, exceeds plasma TVs by a huge amount in quality, at a much, much cheaper price.] They found one and it’s awesome. I got to operate it yesterday for the first time. Hadn’t been out of my room since Sunday, except to get a couple of things and then return. It’s also been great seeing Steve Deyesso again, too. He was around one day early enough to pick up the kids for me. David remembered his face, but couldn’t come up with the name. Naomi played the shy girl for a while, but finally came around. Now when he visits, she’s her typical sweet self and goes right to him.

I thank God and praise Him for the grace and strength He has given through this illness and again thank the many of you who have helped for your care, many prayers, and for the assistance you given.

NaNi Empowered

Last night on the way to church we were on Route 102, and Isaac and I were talking about the time we rode our bikes to about the same place, but had to turn back because I had a leaky tire.

Naomi piped up, “I come? I ride my bike, too?”

I explained that she was still too small to ride that far (she’s only 2.5 years old), but she disagreed:

“Yes, I can! I’m Naomi Wilcox!

How God answered prayer…

First off, I need to thank each of you for prayers. The way God answered was that He brought us to a doctor that not only listened to the massive list of symptoms but also had questions for us. One of which was why I was taking iron tablets. I told her that I am anemic and she wanted to know why. Doug and I looked at each other and thought, hmm, well, I’m not sure why? (Her question was whether there had ever been an underlying cause determined for the anemia.) She was very thorough and up front and also gave an explanation of why some doctors may have passed me on, mainly due to the extent of the work they would have to do in order to properly diagnose and care for me. Doug and I were quite impressed by her and her honesty. We were told that if she can’t help me, she will do all she can to direct me to someone who can.

After our lengthy interview, when it came time for the physical examination, Doug was about to enter the room and she basically said it wasn’t necessary and that he could wait in her office or back in the waiting room. When all was set, she started off by asking me about our relationship and if Doug is adding any stress to my life. I told her what a great husband I have and what a tremendous help and support he is to me. She then told me that she sensed that and that it was great for him to be there with me, too. Typically, her patients’ husbands tend to leave these visits up to the wife (seeing that she’s a reproductive endocrinologist), and figure that they are all set. Also, many times when the husbands do go to the appointments, she finds that they are not so helpful. Needless to say, she was quite impressed by the care of my husband.

I had six tubes of blood drawn for numerous tests. Some to re-do what has been tested in the past, but others to do what hasn’t been considered yet. I go back in approximately six weeks or sooner, depending on the results. I will call her office on Monday to make a follow-up appointment because her receptionist was gone for the day.

Ah, I forgot to mention that the pain did kick in a great deal while sitting in the waiting room, I was uncomfortable on the trip down, but yikes! did it increase. I was ready to lay down on the floor, because no position in the chair was helping. That lasted for quite sometime, but thankfully stopped. Doug went to grab us some lunch nearby, and brought back a chicken shish kebab wrap and a felafel wrap from a Lebanese restaurant, the Phoenicia, at 240 Cambridge Street, just a block away from where we were. Awesome food! I was only able to finish half of my sandwich, but, by the time the appointment was done, we were both hungry and headed back to eat there. [Doug’s note: I was amazed Nichelle felt up to walking the one-block distance to the restaurant. That put her health—at least at that time of day—better than average, although we did have to walk very slowly.] It was absolutely delicious. We couldn’t finish it all of the food—Felafel, tabooly, meat pie, and spinach pie—and brought plenty back with us.

I do need to thank Sandy, Trish, and Cindy for taking care of our kids for us, too. Thanks again for all that you did for us today.


Doug’s Impressions:

I actually had a little speech planned for Dr. Hall, but didn’t get to use it. Essentially, I intended to ask that she leave no stone unturned to find out what was wrong with Nichelle, and if she believed things were out of her field or specific area of expertise, refer Nichelle to a doctor she knew would do the same. To my delight, Dr. Hall declared almost exactly that, right at the beginning.

We spent a long time in the preliminary interview. We covered a lot of ground. I felt at times like, given the immense amount of information we were trying to convey, that we weren’t communicating perfectly (there are a couple of corrections/clarifications we need to make), but Dr. Hall took all the relevant records from us, and intends to read them. Dr. Hall said Nichelle was, “very observant”: Possible translation—In our increasing desperation to find answers, we’re becoming hypervigilant, and noticing unrelated symptoms which might be meaningless in a larger context. I’ve noticed a little bit of that in Nichelle’s online research. She’ll locate and pass on to me documentation on illnesses that match on one or two symptoms, even though the overall pattern does not match at all. One of the hardest questions to answer was what the most pressing problem is. Do we go back to the odd and persistent fibromyalgia-type problems? How do we divide the fibromyalgia pain from the odd and debilitating symptoms (many of which are pain-related) that occur now?

We still don’t have any real answers. Dr. Hall is not convinced that the problems are endocrinological in nature. (We all believe that they are not all caused by endocrine problems.) It is clear to her that there is not one single diagnosis that would cover everyting. She is also considering some things that have not been looked at, such as an autoimmune disorder, or a hemoglobin problem such as spherocytosis. She also asked quite a few questions about what cortisol tests had been done. I was particularly impressed with her willingness to look at some of the items that we tend to now take for granted, such as Nichelle’s anemia. I can’t remember a test that Nichelle has had that didn’t show anemia, but I don’t think anyone has ever looked for the cause, just as I don’t think anyone has ever followed up on why the anemia hasn’t responded well to iron supplements.

The tests Dr. Hall ordered required drawing six tubes of blood. We wait for the results, and for a follow-up with Dr. Hall some weeks hence.

Nichelle is in very poor health today (Saturday).

With a thankful heart…

First off, I’d like to thank Debi C. for lending me the book by Amy Carmichael, Rose from Brier; what I’ve read and re-read has been a blessing and a huge encouragement.

A portion of a song that came to Amy C. while amidst great pain and a desire to be with her Fellowship, “Thou hast not that, My child, but Thou has Me, And am not I alone enough for thee? I know it all, know how thy heart was set Upon this joy which is not give yet. And well I know how through the wistful days Thou walkest all the dear familiar ways, As unregarded as a breath of air, But there in love and longing, always there. I know it all; but from thy brier shall blow a rose for others. If it were not so I would have told thee. Come, then, say to Me: My Lord, my Love, I am content with Thee.”

Thank you to Eric and Juana Quinlan for giving me a CD by Twila Paris, entitled, “He is Exalted.” My favorite song—although I love listening to them all—but the one that has stood out the most is, “God is in Control”:

This is no time for fear
This is a time for faith and determination
Don’t lose the vision here
Carried away by motion
Hold on to all that you hide in your heart
There is one thing that has always been true
It holds the world together

God is in control
We believe that His children will not be forsaken
God is in control
We will choose to remember and never be shaken
There is no power above or beside Him, we know
God is in control

History marches on
There is a bottom line drawn across the ages
Culture can make its plan
Oh, but the line never changes
No matter how the deception may fly
There is one thing that has always been true
It will be true forever

He has never let yo down
Why start to worry now?
He is still the Lord of all we see
And He is still the loving Father
Watching over you and me

Another thank you to Beth C. for sending us the sermon by John MacArthur, entitled, “The Role of Suffering” from II Corinthians chapter 12. It was such a powerful message. One of the points he made was that trials serve many purposes, such as the following: To test our faith, to wean us off of worldly things, help us focus on eternal hope, to reveal what we really love, to teach us to value God’s blessing, to enable us to help others who suffer, to produce endurance, to humble us, or to break our confidence. They produce the broken and contrite heart God wants us to have. Another point is that God uses suffering to draw us to Himself. Suffering has a way of increasing and intensifying our prayer life. In II Co. 12:9, “… My grace is sufficient for you …” God doesn’t remove the issue of pain or trouble, but increases the grace He gives. He gives comforting grace in the midst of a trial. Encouraging grace in the midst of pain. A confident grace. In Deut. 33:26 it says He “rides through the heavens to your help.” There will always be sufficient grace to every issue. God doesn’t promise to remove your trouble, pain, etc., but promises to overwhelm it with grace. How wonderful is that? How wonderful, awesome, and powerful our God and Saviour is!!!!!

My God has given me a wonderful husband, who is stronger than he realizes. I thank Him for such a man that is faithful through it all. My kids are indeed a joy and a blessing, most of the time. From the silly things they say to the serious questions they ask. One of my favorite times with them is just sitting and listening to them sing along with the music that plays. What a joy to hear them sing praises to our God. He’s so very good. His provision for us, His loving care, His guidance and His continued mercy. One of my favorite verses is: Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father. But the very hairs of your head are numbered. Fear ye not therefore, ye are more valuable than many sparrows.
—Matthew 10:29-31

I praise God for His love that is shown through family and friends, with their continued prayers and words of encouragement and the many helpful things they do. Thank you to each of you. Thank you for showing me God’s love and your love, too.

36 Hours / 12 Days and Counting

12 Days and Counting

Endocrinologist 3, with Mass General, has given Nichelle an appointment for May 12 at 1:00 p.m. Nichelle is thrilled. Please pray that this doctor will be determined to find out precisely what is wrong with Nichelle and treat her, or immediately send her to someone who will.

36 Hours

Nichelle experienced about 36 hours of “normal” life this weekend. She was without pain, and had no trouble walking or doing regular activities from Friday afternoon through late Saturday evening. We even got to go to our church visitation program Saturday morning.

She went to church on Sunday morning, but experienced a rapid degradation again. By the end of the service, she needed help getting down the stairs, and needed someone else to drive her home. (I was at home with David, who was sick.)

Nichelle wrote in an e-mail earlier today,

Of course, I was grateful for feeling “normal,” and for being pain-free for the first time in a very long time. I give Praise to God, my Lord and Savior, for His great love and care, and for each of you for your continued love and support and many prayers.

I find Nichelle’s worsening illness is wearing me down (after 13 years with these symptoms appearing periodically, the last 7 of which have been difficult, and the last 2 of which have been extremely disruptive both in symptom severity and percentage of time per year they have been present). I noticed this weekend while she was well that I was dampening out any feeling that might be described as “experiencing hopefulness,” as such feelings have been rewarded repeatedly with crushing disappointment. I still have hope that God will lead us to a treatment eventually, but it seems to have become my own quest to destroy the One Ring—even as we may be getting closer to Mordor.


Addendum: May 2, 2006

My goodness, I was in a funk yesterday! My reading in Spiritual Depression: Its Causes and Its Cure (D. Martyn Lloyd-Jones) coincided perfectly with my mood, and was exactly of what I needed to be reminded. Now I know why it’s taken me so long to get to that particular chapter: God was orchestrating the timing.

All things may seem to be against me ‘to drive me to despair,’ I do not understand what is happening; but I know this, I know that God has so loved me that He sent His only begotten Son into this world for me, I know that while I was an enemy, God sent His only Son to die on the Cross on Calvary’s Hill for me. he has done that for me while I was an enemy, a rebellious alien. I know that the Son of God ‘loved me and gave Himself for me.’ I know that at the cost of His life’s blood I have salvation and that I am a child of God and an heir to everlasting bliss. … Faith reminds itself of what the Scripture calls ‘the exceeding great and precious promises.’

I do not suggest that you will be able to understand everything that is happening. You may not have a full explanation of it; but you will know for certain that God is not unconcerned. That is impossible. The One who has done the greatest thing of all for you, must be concerned about you in everything, and though the clouds are thick and you cannot see His face, you know He is there. … Now hold on to that. … Nothing can happen to you but what He allows, I do not care what it may be, some great disappointment, perhaps, or it may be an illness, it may be a tragedy of some sort, I do not know what it is, but you can be certain of this, that God permits that thing to happen to you because it is ultimately for your good.