Comfort in sorrow

After struggling through a respiratory infection (Renee thinks it was H1N1) which slowed his progress, Parker is doing better this week and has started up where he left off.

He has been getting on all fours and crawling around, not coordinated but moving each member to take him forward.



Because he was ill we decided not to attend any therapies scheduled for the week and it was somewhat of a break for Renee to not constantly be running from one place to the next.



This was a challenging emotional week for us. We have been following the progress of a little girl named Olivia. She was born a month ago and had a condition known as trisomy 18. Her father is my sister-in-law Katy's older brother and they have created a blog to track her life, which, in the case of children with her condition, was not expected to be long. As we read the blog entries and saw the pictures and shared with our children her progress, we were all starting to become attached to Olivia though she was far away. The girls prayers always included "please bless baby Olivia".



I also could see that at some point this would lead inevitably to sorrow. That as we thought of this family, as we started to love this child and pray for her and her parents, that this would mean that we would mourn her passing, and this was a very frightening prospect to me.



Despite this, we persisted on with our prayers and every morning the girls would query and we would open up the blog and see small signs of progress, some signs of digression, but an overwhelming and universal sense of love. Yet I wondered what would happen when Olivia's time on earth would be over and how my family would react.



Katy informed us this afternoon that Olivia had passed away. I shed a good many tears, as did Renee.



Hannah, in her perfect and pure faith included in her prayer tonight, "Please bless baby Olivia that she can get resurrected".



As Abby has been preparing for her baptism this Sunday I have thought much about a specific scripture that speaks of the qualification to be part of the fold of God "...and are willing to mourn with those that mourn... and comfort those that stand in need of comfort..."



Today we mourn with Pam and Trevor for the loss of their daughter. Though I do believe that Hannah's prayer will ultimately come true and Olivia and other children like her will one day be resurrected, for a time we cannot see them, hear them, hold them, or watch them grow. I can only imagine how difficult that must be.

Stronger back, Better shoes

I don't pray anymore for Parker to be saved. I pray for strength. For a stronger back to carry the burdens that are asked of me. And better shoes to walk the paths I must trod. I still pray for Parker to be healed. Every single day. You may think I am delusional. Maybe I am. But I believe it is still possible. It may not be today or tomorrow, but it will be. I don't think in terms of days or months anymore. I think in years & spheres & realms out of earthly dimensions. I know Parker will be healed. I know it. Just like I knew I held the pen that scratched these words on my little post-its at 1 am this morning.

I pray for more patience, more hope, more wisdom to guide me where I must go. Where I do not wish to go, but where I must go, so I load up my back, put on really great shoes, try to chin up & walk.

I walk & walk & walk. Sometimes I run with joy to my destiny and unashamedly take what I must. Sometimes I tiptoe backwards in hopes that I can change time. These backwards steps usually last only for a moment. Today I walk forward, but very, very slowly.

The cab driver said to me "C'est la vie" as he drove me and Parker to Necker last night. Time slowed way down as I actually saw the sun setting between buildings... and I told him, "A l'hopital Necker, sil vous plait". To the Emergency Room.

Parker had an asthma attack. What? But he doesn't have asthma. Well

, I guess he does now. He got some kind of respiratory infection which caused him to get a high fever and have difficulty breathing. Swine flu? No. Perhaps. 6 nebulizer treatments and a thorax x-ray later we were sent home with steroids, antibiotics, and breathing treatments. More medicines? Really? Is that even possible? Where will we fit them in the day...?

Six hours later I returned home in a cab to lie my son to sleep. Sleep in his own bed, with no lights and no cords & no machines & no needles... And no other coughing or crying children around. The house was asleep when we arrived. I lay him in his own warm, comfy bed. He quickly joined his dad and four sisters in slumber. Home is good. A quiet, sleeping home is even better.

I prayed last night in gratitude that I still have my son at home with me,

with us. I prayed for the parents and children I left, we left, in that sick-child prison. For them I prayed for stronger backs, too, and better shoes. They are going to need them where they are going.

Another Perfect Day

Admittedly I have been silent on the blog. I haven't wanted a blog from the beginning. It is all just so personal & overwhelming & intimate & heartbreaking & exposing & just plain hard hard hard. Part of my silence is just that John is so great at communicating that I let him do it. Part of it is that I am too exhausted-mentally, spiritually, physically that I can't think to do it. Partly, I can't even most of the time identify , not to mention, express all of the emotions I have that I just don't even bother. Also, he is better at separating the reality from the ideality. Let's face it: He is a realist. I am an idealist. My blog posts tend to deal with feelings & hopes & dreams. His do, too, but also tell the nitty-gritty day-to-day realities.

That being said, occasionally I think of a "good post". Something worthy of my time & attention, and yours, perhaps. Then I think I should share this burden with John. He has "alot on his plate", too after all.

I think it comes with age, or wisdom, or knowledge that all days are not actually perfect, or even noteworthy, but the past few years, I have starting collecting in my memory days that are worthy of the title "A PERFECT DAY". To me, it signifies something so beautiful & the feelings I have on that day are usually so joyful that I can't help but want to photograph everything in my mind-take it, covet it, wrap it into a little ball & keep it very close to my heart, or etch it into my mind. It is a good, happy, perfect day. Something I want to remember--forever & ever.

I only have 3 days that fit this title in my 35 years of life. Sadly they do not include my wedding day or even the days my children were born (those were great, of course, but I was too young in my maturity, or tired or distracted or stressed to truly appreciate them). I am sure I had more perfect days when I was little, but can't remember them at all. Seeing as how Axelle is included in all 3 of my perfect days, I must have only started realizing these in the past 4 years.

The first was Axelle's first birthday. She was born in May. The winter was long & gray. For those of you who live in Paris, you know what I am talking about. The first hint of springtime sunshine, and everyone runs outside & can't stop talking about it. When Axelle turned one, Abby was a mere 4 1/2. Hannah was then, 2 1/2. I decided to take Abby out of school & celebrate the fact the sun was shining & I had 3 gorgeous creatures given to me. We ate at their favorite restaurant (after a morning nap), took pictures by the Arc de Triomphe, then headed on the 30 bus to the Eiffel Tower for some pink soft serve ice cream in the shadows of the Tower & picked flowers. I remember thinking I was the luckiest woman alive. I had some tourists take our picture.

The second "Perfect Day" was in Kauai 2 summers ago. John & I had just kayaked the NaPali coast, my extended family had returned to the mainland. The girls wanted to go camping like Mom & Dad. We loaded up and drove the yellow Jeep Wrangler (Thanks to the Bebblings) to the furthest beach on the island and watched the sunset over the waves in a perfect pink/purple/orange haze. John & I talked about our dreams & how lucky we were as our 3 energetic angel babies turned into young girls danced & pranced in the sand with waves crashing behind them. We talked of our love for each other & these precious beings we called "ours". I was the luckiest girl alive. There was no one else around. John held out his arm & took our picture.

My third Perfect Day happened this weekend. Well, it is not really a whole day, but more of a flash within a day...that lasts. This has much more meaning considering I feel like I have lived on a different sphere than most earthlings the past 18 months (being pregnant with & having twins will do that to any normal person) and more specifically the past 7 months (watching my healthy infant son nearly die & come back again). A few short weeks ago, I told John I wasn't sure I would ever feel joy again, I was just too too too too sad....that I would never stop blaming myself for not protecting my son from this wicked, awful bacteria. To my surprise he got very angry with me. For those of you who know John, you know it is rare to see anger in his eye. This only made things worse. Since then, I have worked through alot of things. I have done things in the past 7 months I never dreamed possible, or even thought would be or could be expected of me. THIS IS WHAT MAKES THE MOMENTS ALL THAT MUCH MORE WORTHWHILE. I live more because I have tasted death. I think I have, you can debate it. I think more, I listen more, I love more. My joy is far greater because my suffering has been immensely greater. I do feel joy again. Rejoice! I feel a calm, loving presence in my life too, knowing that I can handle what comes next, whatever that means. I can do it because I have been tested, and proved. I can do it because I feel and know the presence of angels...here & there. So back to my perfect day: Only 3 weeks ago, I told John I couldn't imagine I would ever feel happy again. Yesterday, I felt it. I felt it all day long. I woke up with a spring in my step. My son is sitting from a lying position, he is hearing (albeit with machines), he is crawling (call it what you will, but it is forward motion). All of these things were uncertainties only weeks ago. I have a husband who cherishes & supports me, and 4 girls who honor me (well, mostly) and in whom I find great, sincere, genuine pride. My son thinks I am pure sunshine. They are all amazing. I have a loving family & dear friends who stand by me, even when I falter. You might meet me on the street & think I have "too much on my plate" or "a child with special needs", but you will not ask if I have joy in my life. You will see it in my eye, my smile, my touch, see it reflected in the people's eyes around me. I am back. I am here. I am joyful. It is genuine. My "perfect day" moment was a picnic by the Seine at a church party with my 5 children & sunshine with a few drops of rain. Lots of friends, and great food. Am I lucky? Do I even have to ask...That's Perfect Day Number Three.

Urbanyl, Depakine, Tegretol

Parker is going through a series of new medications but seems to be continuing his physical progress.



Dr. Quijano sent us an e-mail on Sunday and indicated that given Parker's continued episodes we should start him on the new medication Urbanyl as soon as possible. We found an open pharmacy and started him that night. Meeting with them on Wednesday, they also changed the current anti-convulsive from Micropakine to Depakine which is the same family of medications, but in a liquid form, making it easier to administer three times per day rather than two. At Necker on Wednesday, Dr Quijano from Garches met & discussed with the head of the Neurology Department to determine what the treatment plan should be for Parker and whether there should be some additional medications. Friday they informed us that we should move him to a different drug called Tegretol, while slowly phasing out the other medications.



We are concerned that he is going through a large range of different medications in a short amount of time. Although, while he had a few episodes early in the week, the last part of the week they were mostly cleared up. Dr. Quijano is also keen on pointing out that the small episodes that he is having, while difficult to witness, shouldn't have a lasting impact on Parker's development and he could potentially grow out of them.



He also had cochlear mapping session (where they adjust the implant--or fine-tune this boy's "hearing") on Wednesday. Dr. Laccourreye informed us that there was significant ossification in the right (implanted) ear and that the electrode titled "one" was no-longer functioning within acceptable ranges. This may limit his ability to hear deeper sounds. She did reassure Renee, however, that in essence Parker could hear with only 10 of the normal 22 operating electrodes.



They also tracked down the particular form of meningitis that Parker had this week. The "Centre National des References Pneuomocoques" confirmed that this particular strain was not covered under the vaccination that he had (Prevenar), it is included in another pneumococcal vaccine which they give to older children. It has been suggested that we vaccinate our older children with this vaccine (Pneumo23) but it is currently out of stock in laboratories until further notice.



The reality is that he is progressing physically. Even seeing him every day we notice it. His fore-arm only body drag is fairly efficient and he will get up on his hands and knees. When we put him in his walker he has some directional control and can, to some exent, navigate our very narrow hallway. For months now, we have left him on the floor in a room and he would essentially stay close to his originally planted spot. Now upon returning, we find he has actually left the room & is searching for (mostly upright & female) playmates down the hall or in the entryway.



Dr. Quijano is very positive on his chance to progress and has been uncharacteristically clear that she would anticipate him to walk and function mostly normally cognitively and physically. She is also keen to remind us where we have come from. "Il est venu de loin" she said to Renee. This means, "He has come a long way".



He is a very energetic little boy and from the beginning the therapists have said that his engaged curiosity will make all the difference. We do see a clear sense of frustration from him not being able to do all that he would like to do and I think this is driving him forward. The occupational therapist reported today that Parker seemed much more focused, directed & steady in his movements. She made him arm crawl several times across the room. She congratulated Parker for making a formal "step" in therapy. Renee cried as she agreed he seems like a different boy. No longer a baby, but a boy, more serious, more sedated, but also more coordinated. Florence also added that she thinks Parker will be crawling in 3 weeks' time. When Renee reported to the girls at dinner this new & exciting news, Abby shouted, "Yes!' and Hannah said without hesitation, "That means God is hearing & answering our prayers..."



We were reminded of several things this week and some of them were emotional to experience. We were staying at the Marriott timeshare to the east of Paris which we have used as an escape to the countryside on occassions. When we checked in, Hannah got very sad and she mentioned last time we stayed there Parker could sit-up by himself, then she burst into tears. I realized that we hadn't stayed out there since the day Parker had gotten sick.

Abby & Renee also stayed up late the first night talking & crying & sharing their emotions about anger & pain & suffering & angels & faith & hope & heavenly things & "why". This is alot for anyone to process, not to mention a 7 year-old regarding her baby brother. Abby, when asked what she wanted for her upcoming birthday stated she would like Parker to be able to crawl for her baptism on November 1.



Axelle has a very on and off relationship with prayer; sometimes she refuses to pray and there are periods when she insists on saying all of the prayers. Currently she is in the latter mode and she always adds with her slight lisp,"Please bless Parker that he can walk, and talk, and crawl, and hear."


My personal desires are a little bit more varied on the subject. While I of course want him to walk and talk and crawl and hear, I have a hard time not projecting into the future and being more concerned that he will be able to do other things. I have found in a recent prayer I focused on him being able to succeed in school, to have good friends, to actively serve in our church and have the opportunities I had growing up. That one day he will have a meaningful career, find a wonderfully loving spouse, get married, have children. That I could guide him in avoiding some things that were hard for me and be a model that he could look up to but ultimately that I could help him be a better person than I am. At some point I realized in this prayer that all of this is what I wanted for all my children, and all of them would face their own set of challenges in achieving these goals and I thought of whether Parker's challenges would really cause that much of a barrier to achieving these.



Abby's goal of having Parker crawl in the the next few weeks until her baptism just may happen -- for Christmas I would like him to walk.