Living the Not-So-Deliberate Life ...

I have found it difficult to be deliberate lately. I feel I am in limbo, between two worlds - the one in which I am here, at home, waiting for the baby to join us, and the one in which we begin to live our lives together, with Emma finally home. That world looms in the not-too-distant future, possibly as early as the end of next week, if Emma continues to gain weight and not have any intestinal problems. It is so close, the end of this tumultuous period. It is so close, and yet, so, so far away ... So much can go wrong. If she vomits, if she begins to have too many bowel movements, if ... if .... if ... So much over which I have no control. I must plan for her home-coming and yet, I must remain cautious, on guard against defeat ... once again. I want to be optimistic. I really do. I can see myself being optimistic ... I just can't feel it. Four times yesterday I told my children to get ready to go shopping - four times I told them we were leaving to get things for the baby. Four times I told them, "Maybe we'll go another day". Finally, with the fifth announcement, I managed to convince myself that I really did have to get certain things ready for her probable, possible, eventual home-coming. We did go - I do have all the receipts. How is that for optimism?

Mile-marker 200, Straight Ahead ...

I was at the hospital for rounds. The resident read from Emma's chart: "Day of life, 196 ...". They asked me if I had any questions. Only one came to mind: Does she get a gold watch when she reaches 200?

The Queen's Arrival ...

I journeyed to Philly today. Upon my arrival at the hospital, I was greeted by a sign that read, "Parking lot is full. Sorry for the inconvenience." Hmm. What to do? I had just driven 85 miles to be turned about by a sign, 'Sorry for the inconvenience"? Uh, no. I felt extremely belligerent at that moment. I wanted to ... I don't know what I wanted to do, but definitely I wanted to blame someone, have someone fix it, have someone ... Who is this "someone" I wanted to hold responsible? The someone who was going to make the hospital less hectic today, on the day of my arrival. For does not that someone know that I, Emma's mom, visit on Wednesday? Was not someone notified? And, by the way, could that same someone arrange to have my daughter better so she can be home for the holidays? Because this is truly a huge inconvenience and I want it stopped ... like now ... okay ... someone? Anyone? Bueller? Bueller?

Challenges and Blessings ...

I stumbled upon a new blog this weekend - it is on my sidebar. If you ever need a kick in the pants after a self-pity party, just click over on NieNie. She'll put it all in perspective. I was up until the wee hours of the morning reading her blog. I needed to see when it all changed for her, the moment she started to categorize her life into "before" and "after". There is a single picture that, once you know the story, captures both the essence of the loss and the joy of her journey to a new being - Easter Morning, 2008. I stared at that picture for quite some time, both before and after I had learned of her struggle, her suffering, her need to reinvent herself and yet cling to what made her herself before the accident. There is a prophetic air to her writing in the months before the accident, an alluding to fear, a sense of almost knowing this all must come tumbling down, it is too perfect, too blissful. Before Emma was born, I would marvel at the people I had either met or read about who seemed to be blessed by the struggles in their lives. Children who challenged them with their disabilities, disease that had ravaged their bodies and left them without much hope of a future, catastrophic events caused by the carelessness of others that devastated their families or their homes or their livelihoods - all horrible circumstances that one would think would cause a sense of despair to set in, a sense of pointlessness, a sense of, "I just cannot go on". And I would wonder at the absence of that, and at the joy that seemed to define their lives. I would fear the same things happening to me, to my family, most especially, to my children - because I doubted my own courage, my own abilities to cope, my own strength and faith. I am not out of the darkness yet, so I can not judge how I have weathered this storm in my life. But I have come to realize that there is a sense of being chosen that comes with struggles of these proportions. As though, God looks down at each of us and judges us to be strong enough to handle the gifts of the special circumstances we have been presented. And we call upon ourselves to meet the challenge, be worthy of the gift. Because that is what has come out of my challenge - a sense of wanting to be worthy of Emma, of all she has been through, of all that has been done to hopefully bring her home to us. There is also as an appreciation of all the normalcy that marked our lives before, and a desire to renew that in the aftermath of the turmoil that has marked it since. When you read NieNie's story, you will marvel at her faith, her strength, her willingness to go on. She speaks of the blessings in her life, and of her simple thankfulness at being alive. Hers is perhaps the most inspirational story I have read in a very long time - well, except, of course, for my little angel. But I am a bit biased.

Weekly Report ...

Week #20 completed! It was a good week. Once again, my six-week schedule helped me remain on track and focused.

The oldest twin completed Central Asia in her Eastern Hemispheres studies. We are working our way through Penny Candy, and she just completed the missionary biography she was reading. In Latin, she is continuing the review of LCI that LCII focuses on in the first five lessons. We also listened to the recordings from Librivox of Famous Men of Rome, completing chapters 3-5. I had her focus her attention on Life of Fred:Decimals & Percents, completing up to the Bridge that includes chapter 25. We will finish the book in two weeks, and then return to Math-U-See, Lesson 19. I have the Fred Algebra book on hand already, but I do not think we will begin it just yet.

Grammar studies included the younger twin, and we were able to complete five lessons this week, as well as two worksheets, and a writing assignment that focused on outlining paragraphs. The younger twin also worked his way through to the second quiz in his third CLE math workbook, and completed two weeks in science. He is reading Just So Stories, by Rudyard Kipling. He completed a number of drawing lessons via the on-line academy, and studied the Jewish holidays and Biblical origins of Rosh Hashanah and Yom Kippur. In History, we read about Greek sculpture and architecture. He added some narrations to his notebook, and drew examples of the Greek columns. He also decided to research the prevalence of the various columns in historical buildings. Got to love it when they take that extra step.

Little Bear is nearing the completion of her fourth workbook in math, and she has reached lesson 30 in R & S Spelling. We studied the Nile River this week, as well as King Tut and the mummification process. She remembers a great deal from when the older kids were working their way through SOTW I, which was 4 years ago. She was only 4 then. In Science, we studied pigeons, and read about the Cuckoo, who replaces the eggs of certain birds with its own, so that they can be raised by the efforts of others. Little Bear was really disturbed by this, especially since it involved ridding the nest of the eggs that belonged there. She felt the Cuckoo should do its own work. Little Bear is continuing to do well with Writing with Ease. Her narrations have improved so much. I have added a little tweak to the program a la the old Sonlight LA. I have her underline, circle, squiggly underline various parts of speech. She is able to recognize nouns, proper nouns, verbs, and adjectives now with relative ease.

I did manage to get some work in with Rocko. I always wait until he is receptive because I just do not see the point in trying to teach him when he is otherwise engaged. His math skills are excellent, and he can add two two-digit numbers in his head. And his writing is improving. I am using a dry-erase board with him, and helped him with his grip this week. It really seemed to improve the quality of his writing. We read about the Creation week, and a picture book of Noah's Ark. He was so interested in that one, and was able to relate to me the story in his Bible storybook about how Noah came to be on the ark. He then took it upon himself to draw his own rendition of the ark, and the animals, and Noah and his sons. I can see his interest in academics growing slowly. He asks me more often to "do school". It is nice to see his interests come alive.

Well, those are the highlights. Emma is improving, slowly. She is over 7 1/2 lbs. We are awaiting lab analysis of her stools, as there was some concern over the consistency. Let's just pray it is not the start of anything bad again. I will end (actually they are up at the top) with pictures of some playtime at a nearby park, which is situated beside a lake. It is beautiful. Hope you had a good week, too.

About Face ...

Notice anything? Anything different? In the words of Tommy Pickles, Emma's "nakee" - well, her face is, anyway. No more feeding tube. No more tape, no more blotches caused by tape, no more horrible patches of bruising and bleeding caused by her yanking the tube and the tape. She is taking all of her feeds by bottle.

Bittersweet Moments ...

I know the NICU nurses want to make me feel good about Emma's development and experiences, but ... to hear that her first "walk" was with the nurse, and her first smile shared with another baby was with the nurse, and the first time she laughed with someone playing "Patty Cake" with her was with ... the nurse, is a hard pill to swallow. I am pleased that some nurses take more of an interest in spending time with Emma beyond what her physical needs dictate. It warms my heart to know there are nurses who nurture her soul as well as her body. But it is as though I am awaiting word on an adoption that is taking far too long due to red-tape, while the baby is languishing in a ward, growing without the family that longs to provide her comfort, sustenance, and love on a daily, hourly, second-by-second basis. The empty cradle in the next room, the quilt with the warm chenille fabric, and the doll lovingly placed on the pillow inside the bed, all await Emma. The siblings who have not set eyes upon her in six months - since she weighed less than two pounds - already speak fondly of their baby sister, and await Emma. And I await Emma - not just word of Emma, not just the morning, afternoon, or nightly report on Emma, but the actual being of Emma.

The (Long) Road Home ...

I received a call from Emma's doctor yesterday. She is the new attending, this habit of changing doctors every three weeks only serving to add to my sense of uncertainty. I had asked for clarification that we are indeed going to follow the "plan", that which was agreed upon in the conference room many weeks ago. Because, as has happened before, it is not unheard of for the new attending to decide, "Now we are going to do things my way," which could result in drastic consequences for Emma. As usual, my heart started to race when the number for St. Chris appeared on my phone. The doctor let me know right away that Emma was fine, but my heart beat took awhile to receive the message. She reassured me that the treatment plan was unchanged, and that formula fortifier was not to be used at this point. But she stressed that Emma is only one-third of the way to full feeds. One-third? I thought - nay, I hoped, I prayed, I inwardly pleaded and willed it to be - she had done her math wrong, that somehow she miscalculated. The nurse told me, on Sunday, Emma was one-half of the way there - 1/2, as in 21 more days from Sunday, as in 19 more days from today. The difference between 1/2 and 1/3 is huge. One-third means 44 more days of this, more than twice what 1/2 means. The road which led us to right before Christmas, suddenly stretches to the new year. It means trips to Philly through snow and ice, freezing temps and inclement conditions. Just as I was hoping to share our fall trips to the park with my little one, I was so hoping to avoid winter driving to the hospital. Emma is the little golden ring just beyond my reach - each time I believe she is within my grasp, she is pulled just that much further away, dangling, waiting for me to try again. I won't stop trying, of course - but it certainly weighs heavy on my soul.

What's Up ...

This is Emma taking a bottle.

This is Emma saying, "Is that all you've got?" (She has obviously not sat in on our grammar classes.)

We are at 21 ml every three hours and 7 lbs. 4 1/2 oz. I've started removing some of her preemie outfits and replacing them with Newborn sizes. Very exciting developments - makes you want to cheer and be sick from nausea all at the same time! We can only pray that she can maintain this progress without any setbacks. Perhaps her homecoming will serve as this family's Christmas gift.

Weekly Review...

We had a pretty good week. My oldest daughter still has a poor attitude toward math, and sometimes, that translates into a poor attitude in general, which morphs into me getting upset with her poor attitude in math ... Vicious cycle. Math needs to be done. That's it! You can not be a math drop-out in the 6th grade, no matter much you excel in your other subjects. She may love literature, and do very well with writing, but math is a necessary evil. So we sat together every. single. day. And we did allllll the bridge exercises in Life of Fred: Decimals & Percents to bring us up to Ch. 21. She was not happy - with me. This child wants to take herself to her room after breakfast and be left alone - as in, I-am-my-own-island alone.

She also began Central Asia in her Eastern Hemisphere Explorer studies. The map for this assignment was ... oh. my. I helped her with this one, only because, well, did I say ... oh. my.? One more "... istan" and my hand was going to fall off. We also completed one lesson in Latina Christiana II and Ludere II which was another exercise in mental anguish. I like the challenge of Ludere puzzles, but the derivative crosswords are so nonspecific - they are almost impossible to complete without the aid of the teacher's manual. I am glad we switched back from Ecce Romani, however, as the structured assignments were just what my little Einstein needed to get her motivated with Latin again. She read, probably three or four books while locked up in her lair, and we are working on Whatever Happened to Penny Candy? together. It is quite insightful to read this book in the presence of an 8 and 6 year old - they have much to add in regards to government, work ethic, and the evils of taxes.

The younger twin continues to work his way through CLE math. He finished another four assignments and a quiz. We also studied the origin of the Olympic games, watched a video on the geography of Greece, and read about Persephone in our mythology book. He is also close to completing The World of Captain John Smith, quite an endeavor, especially at the sloooooow pace recommended by Ambleside Online. I have him studying the origin of Jewish holy days, as well as reading a number of books to the younger children, when he can corral Rocky long enough to get him to listen to the story. He is also making wonderful progress in his SL Science studies, and really enjoying the readings. It is especially wonderful that he is totally independent in this course. Once he had the hang of using the schedule and the activity sheets, it was not necessary for me to sit with him. He is required to be near me, and I am available to answer questions or clarify something he may not understand. But he is pretty much on his own, and loving science this year. SL did a really good job revamping their science this year. It is so user friendly and really written to the student. When you have four levels of science going, it is good to know that your 10 and up kids can be independent.

Little Bear is very near completing her 2nd grade studies. I am looking into ordering for her new year, which we will begin after the Christmas holidays. We were very eclectic this year, especially with history and geography, sometimes doing her own studies and other times folding her in with one of the older children. She has learned a good amount of general world geography. She has also done well with her level of SL Science. Give her a worksheet and she fills it in with gusto! Math is her love. Her work is so neat and organized. It is wonderful that she has acquired this skill so early in life. No need to scold her for misplaced books, or sloppy figures. Each day, she sits at the table and copies a paragraph from her McGuffey Reader - not because I assigned it, but because she wants to do it, and enjoys it.

Little Bear, Rocky, and the Younger Twin completed many Draw Squad assignments this week. Their drawings are so unbelievable - the enrollment in the on-line academy was some of the best money I ever spent. They have learned so much. My older daughter much prefers her lessons in God & the History of Art. As a group, we began the Classical Era in The History of Classical Music. And the twins completed two more lessons in grammar, as well as one worksheet. I have also begun implementing many of the ideas from Writing with Ease across the curriculum, resulting in much improved written work.

It was a beautiful week for being out of doors. So we included lots of time outside in our days. And those are the highlights. Hope your week was good, too.

There But By the Grace ...

http://www.gavinowens.com/

Ugh ...

Emma took her entire feed by mouth tonight - 19ml. It is quite an accomplishment considering she only started feeding by bottle earlier this week. I miss her. From what I have read concerning the traffic in Philly, I would probably be looking at 1-2 extra hours on the road. Plus, if there are any detours, I would just be completely lost. I have no idea how to go but one way. Ugh!!!

I know unions have their place, but I am hard pressed to feel sympathy for people who call a strike when the economy is so fragile and so many people have lost their jobs. It seems about as well thought out as the electric company's plan to raise rates 35% in January. Where is the common sense, an eye to what is moral and righteous? What sense is there is demanding more money when money is so tight for everyone? The electric company has a whole host of programs available to help those who will no longer be able to afford their electricity when the rates go up. How is that better than keeping the rates at a level we can all afford - on our own, without any government assistance? Or are we all buying into this nonsense that a government program somehow has nothing to do with the working people of this nation? The money originates with us, the taxpayers. It all means more taxes. And less money in our pockets to pay for our needs. Without government assistance. Until we can't afford to pay the taxes, and have to sell our houses to avoid the taxes, and then hope we qualify for a government program to help us secure housing. Paid for by taxes.

Books ...

I was sitting with my daughter, working my way through yet another painful math session, when I glanced to my left and saw the vignette pictured above. It struck me as majestic, simple yet bold in its statement - Books! I love books. There is nothing I desire to spend money on more than books. Professional haircuts, manicures, and nice clothes are not a priority when lounging pajamas and hair pulled back in a headband are way more comfortable for the travels that await me in a book. I wait with eager anticipation when it is time for new books to arrive. You would never catch me with a Kindle or any other device meant to replace the tactile pleasures of an actual book - its weight in my hands, whether a tome or a simple picture book meant to please my young uns, the smell of an old book versus a new one, the spine of a well-worn volume that is hanging on by a thread as opposed to the tight binding of yet unexplored territory . Books line my shelves, lay waiting for me in the car, are stacked three to six high on my nightstand, and are safely ensconced in my purse, less a spare moment present itself to me unarmed. I hate finding time to fill, yet having no reading material with which to fill it.

I keep a stash of books at the hospital now. I have a book of fairy tales and one of poems and prayers to read to Emma. As she snuggles in my arms, I share the wonders of reading with her, just as I would be doing if she were home with us - just as we should have been doing. I imagine how different our days would be with an infant in the house, how we would be pressed to include her schedule in our daily routine, take her needs into consideration when planning our days. But one cannot get too caught up in the "if only" s in life. I have at times, only to find myself becoming stagnant, unable to move forward because, after all, life is just not how it was supposed to be. I oftentimes think that situations like ourselves are exactly what health care reform policies seek to avoid in the future - do not allow people to be faced with these dilemmas that cause loss of work time, loss of efficiency in all things, emotional stress ... money. If life hands you lemons, throw them away before they sour the life you really wanted. The truth is, yes, I would not have ever imagined this to be our life, and I do wish it away on certain days. But it is not the child I wish away - just the situation. While it is difficult and stressful and expensive, it is our life. There is something to be said for not always getting what you want in life. It may be cliche, but it is true that these are the times that make you stronger and allow you to reflect on your blessings and see your growth in character and fortitude. I have seen my children as youngsters who are not as selfish as I feared and capable of love that far surpasses that which I ever expected.

How did I get started on this? Oh, yeah, books. Well, suffice it to say, I love books.

Hold On Just a Little Longer ...

I know I should not take the Septa strike personally, but ... 900,000 people competing on the roads of Philly to get to where they must be, and me, trying to snake my way to the hospital right smack down the main drag? I think I am outnumbered! Oh, Emma. Mommy's not coming to see you after all. Excuse me while I go weep.

We Took It Outside...

The Young Pup

The Awful, Never-Ending, Layer-Upon-Layer of Leaves

The Serious Scholar

The Artists In Deep Concentration

Today was a rough day. Perhaps it was the time-change ... Perhaps it was yet another whirlwind weekend ... Whatever the reason, by 11 am I had had enough. Attitudes were poor (mine included), and the thought of the long hours that stretched before us until bedtime just was too overwhelming to bear. So, we packed up our sketch books and the video camera and headed outside. We spread an old comforter across the lawn and the kids settled in to complete their assignment - pick a vista, snap a picture of it, and then sketch it. I mowed the leaves (that's right, I mowed them) as they rather contently sketched the house, the rock beds, and the mailbox. They did a very good job. My serious student was very precise with her architecturally detailed drawing of the house. My Mark Kistler fan added cartoon characters to his rock bed, and gave the house a fun-house feel. My Little Bear did such a good job with her drawing - I am always surprised by the effort she puts into her work, because I think of her as so young still. It was wonderful for Rocky to be out of doors, so he could race about like the young pup that he is. We even had some time for PE - football practice. After a few hours, we took a break to get some food and then the kids spent a few more hours outside. We completed our academic work in the evening. Non-traditional but time well-spent. It was a glorious fall day, cool but not cold, brisk, not too many bugs to spoil the air. The children really enjoyed it, it helped break the hold the bad mood of the am had on us, and I got some yard work done.

I think the bad moods and poor attitudes are partially my fault. I have committed an egregious parenting error - I have felt sorry for my children. I feel sorry for them for having to go through the emotional turmoil of this situation with Emma, and I feel sorry for them that I have to leave them so often and disrupt our normal way of life. But pity never did a body good. So I need to just stop. I need to reinstitute my high expectations for my children. Chores need to be done again with efficiency and regularity. School requires effort, concentration, and time. And life does not have to be fun. It is nice when it is. Today it was. Tomorrow? We'll see.

Take it Outside ...

Saturday was a hospital day. I sat with Emma for three hours. With the Phillies and the Eagles scheduled for today, I would have spent more time sitting in traffic than sitting with the baby. Emma was very fussy. There was a new admittance who was put right next to her, and his parents came in for their first time. The man was soooo loud. I feel terribly sorry for anyone who enters the hallowed realm of the NICU, but this particular person irritated me. Not only was he loud, but the very first question he asked of the neonatologist was if, in her opinion, the fault for his baby's plight lay with the obstetrician. I truly wish someone had the sense to give these parents some privacy to converse with the doctor. I did not want to be privy to what I was sure was a lawsuit in the making conversation. The whole day was ruined for me. I felt - and still feel - unsettled. I can not help but worry that, one day, in the not so distant future, the brilliant minds most wanted - and needed - in the medical profession will no longer consider that a viable career option, simply because, who wants to put all that time, effort, and money into a career that can be ended based on a judgment call that is questioned by some lay person? My family has been the recipient of some amazing life-saving medical care in the past twenty years. We have also suffered loss at the hands of doctors who may have done better to listen closer, perhaps ask for guidance from other doctors. Loss hurts. Dollar amounts cannot undo loss. I cannot imagine putting a dollar amount on a life. Perhaps if one is seeking to pay for care for a child who has been carelessly injured, I could see the benefit. But, if I lost my child, you could lay a million dollars on my bed, and I would still feel the sting of the pea beneath my mattress - for the loss would be that pea, forever the pain of something missing, of something not right, of the child that was and is no more. Maybe lawsuits help assuage some. Maybe it is a tonic to help soothe the hurt, calm the giant "what ifs" of fear that loom over us when our children present to us so fragile and so broken in the NICU. It is most certainly something that requires the expertise of those who possess enough knowledge to say that a mistake was made. And it is something that most certainly should be done discreetly, in hushed whispers in a conference room or out of ear shot of those of us for whom it is none of our business. I do not want to be privy to your dark-side while I've got my own to live through. And, at the moment, I am trying to enjoy the light of the tiny embers of brightness that I pray continue to be stoked in my little Emma.

Just as a caveat, lest you think, "My, aren't we holier than thou!" - I do believe in the right to use the legal system if necessary to address possible malpractice. There is not a day that goes by that I do not entertain the possibility of that need in my own situation. But it will be done with serious consideration, only following the realization that it is an avenue that must be explored to address the needs of Emma in the future. It will not be a way of displacing the pain and the burden. And it will never compensate for any of what we have gone through - most especially, Emma. It will never take away my own sense of guilt that perhaps I did not take good enough care of myself. I will always curse that blasted flu that plagued my entire family in February of last year, blurring symptoms of pregnancy with symptoms of illness. Each time I enter the NICU, I repeat what has become my mantra: "There but by the grace of God go I", simply because, as bad as it has been and as it may yet become, there is so much worse out there - the baby born with a hole in its face, whose cry sounds like the most awful wind-up toy you could imagine; the baby with the hole in the top of its head, whose cap fell off when the mom picked it up, spewing fluid all over her; the baby in bed 5, whose O2 levels keep falling into the 30s, requiring the nurses to repeatedly bag him. I could go on, but, quite simply, There but by the grace ...