Happy Birthday Twins!

Penelope spent the day wearing her new summer pajamas, and riding her new scooter around the house.

Parker woke up at 3 am with an asthma attack, then didn't go back to sleep. We went to CEOP with his teacher for next year to observe what they do there for his individual speech therapy session. He was not up to par, but tried his best. It was fine.

We had a picnic in our salon for lunch (one of my favorite things in the world, actually, with all of my little chickens on my lap), then we all made really fancy cupcakes for the twin's birthday. It was fabulous, and the twins couldn't get enough cake.

Parker woke up really grumpy from his nap, and now we're off to dinner with the kids to celebrate.

I think we're all ready for a vacation. We've been discussing deleting June from our calendars for next year. Its just been too busy. We'll be happy when school is out next week. What do you think??

Have a great weekend!

Absences are the same as Crises

There is so much to learn about the brain, it is incredible how little even the "experts" seem to know. Sometimes I think I could be a consultant for the neurologists. I am, afterall, living with (and trying to case manage) a neuro-challenged specimen.

So as it goes, the same thing seems to have happened this spring that happened last spring. Remember Parker climbing out of his crib seemingly uncontrollably? We first thought it was because he was excited and determined to climb. But as it turned out, it was his brain sort of short-circuiting him awake. And at that point it was difficult for him to find sleep again.

So we upped his meds, and he got "better".

Well a few months ago, Parker started waking up between 3 and 5 am. AND STAYED AWAKE UNTIL HIS NAPTIME IN THE AFTERNOON. This was significant for a household full of people who usually sleep during those times. It meant that the exact time he needed to get ready for school (CEOP) ,and I also needed to get 5 other people in the house ready for school, he needed and wanted to be held, and reassured, and basically wanted a nap about 8 or 9 am.

The doctors chalked it up to a "normal"phase some children go through at this age, or nightmares, or who-knows-what-it-doesn't-matter-to-me-all-that-much-becuase-it's-not-me-waking-up-all-night-long-repeatedly-for-months-it's-unfortunately-you, Madame.

That was the way I felt, anyway. But I was beginning to have very hazy thoughts because I was very plainly sleep-deprived, so I didn't know what exactly to think or do at that point.

But I climbed into a very welcome bed about 12:20 one night, and at exactly 12:30, ther were little boy noises coming from the twins' room. He stayed awake all night long. Poor little guy then went to school, and did a great job they tell me....

But, they also told me they thought he was having "absences". What is that? It's when your brain actually stops sending electricity to the next part of your brain to complete the task you are working on....for a few seconds, then starts up again when it figures something should actually be done about the obvious malfunction.

I learned today during Parker's EEG (but I'm getting ahead of myself) that absences only last 5-10 seconds.

But people seem to think that absences are not as serious as "crises". The french word for a seizure is a "crise".. Yes, I think it would be considered a crisis if your brain started mis-firing and sending bad information to your limbs, eyes, tongue, etc to move repeatedly and involuntarily, so chalk one up to the french for that terminology. Its much more explicative than "seizure".

So for months I have had the impression that "absences" are just not as bad as "crises"....but truth be told, its not as tiring for the epileptic patient, but its basically the same thing. Humph. This is disconcerting, I think to myself. And Parker is having them? For real? I hadn't seen one until today.

We do not want Parker having absences or crises, they both signify brain abnormalities, and to me, brain lesions--which translates to---brain damage.

But the good news is his EEG looked great today after we've increased his meds. The bad news is that he clearly still needs these meds, and my prayers for him to have "no more brain lesions or epilepsy"have not yet been answered.

BUT many of my other humble prayers HAVE been answered with time, so I must be patient, and finally soak up all I can about deafness, implants, hearing aids, deaf education, hydrocephaly, vestibules, bilingual education and brain-compromised (do I prefer that?) children, and a bunch of other important stuff--like the difference between an absence and a crisis.

For those of you who prayed for us today, THANK YOU! It was very painless comparatively speaking. Parker put on his spider-man mask (what I call it--you would, too if you saw it), and sand in his hair with the electrodes in style--(I joked that we were going to the beach--the techs just love it when we show up)--and even slept without a fight. That was a wonderful blessing for a tired mama.

But he is sleeping better at night. UNLESS HE SKIPS HIS NAP. THEN HE WAKES UP AT NIGHT. Weird, right? SO much for the old adage of keeping your toddler awake so they sleep earlier, longer, and harder. It's just not true. It's just not true for Parker. He needs a routine, and he needs to be consistent in that routine.

ANd apparently is very sensitive to having absences (I still prefer them)if he is sleep deprived.

Sleep child, and onward, soldier. Onward we go.

Tomorrow is the twins' birthday.

I can't believe my babies are turning three. It's amazing.

Awesome!

We have some friends here in Paris whose children attend the same school as ours. Like many of the families here, the couple is mixed. The dad is British, and the Mom is french. A few years ago, our oldest, Abby, went to play at their house. After she came home, the dad said to me, "Her accent is very Californian". I wasn't quite sure what he meant.

We talk about accents alot here, of course. Mine is good, yours is not so great, did you even understand that talk in french today at church cuz all I heard was the spanish "y"s stuck in there where there were supposed to be "et"s, etc. When we first got here people would say to John, "I see that you are white, but you talk with a black accent."Now that is cool, we thought.... A big white guy with a Haitian accent (served his mission there partly). We occasionally have to ask the children if they will get marked off on their english spelling tests if they spell things with a "z" like all yankees should, or if they are obliged to put an "s"like "proper oxford"pupils should (for example, organize, for organise). OK, so you get the idea, we're always talking about accents here, and whether we say "bath"or I can't even begin to write how our english friends would say it....or banana (buh-nuuuh-na??)

But Parker has an accent--"Un petit accent americain"according to his french speech therapist. Of course that is not the goal AT ALL to keep your accents when you speak a second or subsequent foreign language, but I must admit I loved it when my (then) 5 year old daughter once told me: "I want you to read this (french) book to me in english mom, not french."When I responded to her that I will read english books to her in english, and french books to her in french, she responded, "But, you don't really talk like la maitresse (teacher) mom, you speak a little bit espagnole!"(see-- I don't even know how to spell anymore)... I was convinced my accent would never win any awards. Every now and then (many years later) someone mistakes me as a Swedish or Dutch woman, and I am actually pleased that they didn't guess British or American. (It means my accent was not grossly obviously anglo).

So the fact that Parker has an accent that is anything but "deaf" I think is of course totally awesome!

He's repeating the last word of every sentence these days. Life seems good, maybe even awesome. Of course some of his articulations are not right, but we're making progress. I counted 120 english words, and 45 french words the other day that he says.

awe·some

 [aw-suhm]–adjective

1.

inspiring awe: an awesome sight.

2.

showing or characterized by awe.

3.

Slang . very impressive: That new white convertible is totally

awesome.

Or I might say: That little deaf boy sure is awesome!

And that is what my friend meant when he said that our accent was Californian. That our kids say things like "awesome" or "totally" mixed in with "garbage" instead of "rubbish"or "elevator" instead of "lift".

Hmm, I wonder where they learned to say that?

Now I've got to teach Parker that word.

This video is not the best sampling of him saying " I love you", but it's still evolving. He actually said it best when he first started. I don't mind. We've got room to grow. I know what he's trying to say.

Fear not, neither be thou dismayed

I wept tonight. It was unexpected. I cuddled up to my sweetie, put my head on his shoulder and just shed some quiet tears. I don't even think he noticed. His breathing quickly changed to his sleeping giant sounds soon after I lay my head on his strong shoulder... And I felt a very quiet, very real peace wash over me. "It is done"..is what it spoke to me. I could see in my mind's eye a black book shutting, surrounded by darkness, and to me it symbolized the end of the meningitis chapter in our family's life. And it reminded me of something very sacred and very unsettling for many months that I saw when Parker was in his coma.

When that little 8 month old baby boy lay on that air mattress with all of those cords and machines, and we sat and watched and prayed-we also pleaded with God for a miracle. I prayed, then John and our Bishop (and dear friend), Dave, gave Parker a blessing of healing for the sick. I knew that he would be ok. I had a very real feeling that all would be as it should be. I was not at all panicked. I had a quiet reassurance that things would unroll as they were meant to. And in that, I knew that John could and would bless Parker to health and wholeness, and entirety. IT WAS AT THAT VERY POINT THAT I KNEW THAT HE WOULD BE HEALED.

And during the blessing, I saw something extraordinary:

I saw pillars of light coming from the center of the earth, that went heavenward. Many, huge, beautiful pillars of light, that transcended the earth, the old Necker building, the four floors of the building until they reached our room--the pristine ICU room in the Reanimation Unit that Parker's lifeless body lay. These pillars of light continued through our room and towards the sky. I felt nothing but peace. Then, when the prayer was over, I kept my eyes closed, and for a moment, I felt like I was floating towards heaven. And I felt warmth in my heart and chest. But I had an inner urge to look to my right. So with my eyes still closed, I turned my head to the right. And I felt that there was something I was supposed to see far in a dark corner. But I remember it being strange that the rest of the room was filled with light and warmth, and alot of it...but there was a corner that beckoned to me. That I knew we had to traverse, but it seemed far from where we were, and as I tried to look into that dark corner, to see what was hiding there, someone spoke. The Bishop, I think, and I was taken back to the physical reality of the room.

And these questions came to my mind repeatedly from time to time throughout the past few years,

"What was that dark corner?"

" What did it represent?"

"What did it mean?"

"Was I supposed to go there?"

"Was I supposed to look there?"

"Did I make a mistake by opening my eyes, and not straining more to see what was there, hiding in that dark corner?"

....in that dark corner in the middle of that very warm, and very light room....?

What did it represent?

And tonight as I unexpectedly wept on my strong husband's shoulder, the Spirit whispered to me that the past two years (plus) were that dark corner. That we came out of that dark corner, and have always been surrounded by warmth and light, even if we have been living (partly or sometimes completely--sometimes for long periods of time, and sometimes shorter) in that dark corner.

And that the darkness in that corner is being replaced by light. And complete light, and warmth. And safety.

And the dark chapter is closing in this story.

It's been very difficult to come out of that "darkness" into some sort of normalcy. I imagine this is what other people feel like all of the time, and what I never thought I would feel again.

It's so very refreshing to think of Penelope and her potty training, or how to hold her more, or teach her more, or make up for some lost time, better, more completely, in some small sense.... To sculpt her art project with Abby..or talk about Bieber Fever..... To read with Hannah, and see the sparkle in her eyes again when I kiss her goodnight..... And stop to listen to Axelle sing in whichever corner of the house she is in. She simply goes through her daily tasks in song.

And, it's good here.

__________________ ____________________ ____________________

The other day we were at the pool. John was actually in the water with the 5 children. I was standing outside the pool, with my suit on, not yet in the water. And we were watching the kids play in the fountains, and twirl around a lazy river, when suddenly we heard a thud and gasp from the crowd behind us. John and I turned to see the thud was actually Penelope who had somehow fallen 4 feet over the ledge of the pool, onto hard cement, flat on her back, and head. It didn't register at first that it was our child. There was another parent running to her side. I took a mere 5 steps, and quickly enveloped her into my arms and chest. And the woman after about 30 seconds said to me, "But where is her mother?".....Shocked, I said, "I am her mother."

But I couldn't help but wonder WHY on earth she was doubting that I was her mother? Because I was not horrified, scared, screaming, crying? Or did I not look the part? Or was she expecting her mother to be in the water with her (her 7 year old sister, arm floaties and ring-- and me and her daddy less than 10 feet away-- were not enough supervision for her?)....I analyzed that one for awhile.

And I came to the conclusion that it must have been the calm manner in which I took her into my arms, wondering if her head was bleeding, looking into her eyes for a concussion. I had a significant realization at that point:

I realized I am not really scared anymore. Of course I am terrified in my heart of things I've never dreamed of having to endure before, but on a very daily basis, I am hardly stunned by shocking events. I just continue onward as obliged. AND I think it is because I was so stunned, so hurt, so traumatized with meningitis and PJ, and I realized I was SO NOT RUNNING THE SHOW, that I decided some time ago that worrying is actually completely counterproductive.

And I thought of this scripture in Joshua 8:1 "Fear not, neither be thou dismayed."

And can't help but think that there is something still dark lurking in a corner somewhere. That my peace and joy are not the only feelings left in this heart of mine. I have many more days to live. But I am always optimistic that we have only good things to come, greatness to follow this boy, and this story.

So for now, I walk by faith, I accept this intuition, this vision of mine, and thank my Lord for His infinite wisdom, and pray for more wisdom, more patience, more knowledge, more energy to do all of the things that are required of me as a mother, and a wife, and a friend. And assume that the darkness is gone, the corners are all filled with light. And I accept what comes at me with open arms and an open heart. Come what may. I am no longer afraid. And I have no time to worry, anyway, right?

There is too much to do, too much life to live.

Come what may.