Baby M.

I call her Baby M. because she does not have a first name and her last name begins with "M". This little baby has been quite a challenge for us. Knowledge of him/her (sex is uncertain without blood test) has taken us through some heavy periods of self-examination. We have prayed and prayed seeking God on what role we should play in this child's life. We have sought Godly counsel and talked in endless circles. We have been up and down and back and forth.

Earlier this week the baby was placed on a special needs website. We were encouraged by this and reminded that we are not the only ones who care about this little one. We continued to pray for God's will and seek information. I met with Anara's MD earlier this week and discussed what the treatment plan and future might look like. He was very honest with me about her condition, the number of surgeries, and the long-term care plan. He was quite amazing in his advice; although he was honest about her fragility, he was never discouraging and never took away hope.

Today I received an email that the baby has continued to lose weight. She now weighs only 3.8lbs. Her little photo looked nothing like the pictures we had previously received. Her first pictures were peaceful and her face full. Today's photo looked like skin had been stretched over a tiny skeleton. It is doubtful that she will recover. It is unlikely with her bowel outside her body, that she will be able to absorb the nutrition necessary to sustain her.

I am not writing this as one without hope. I am very hopeful. I know that God can heal her small body. I know that she could begin to recover and amaze everyone who has heard about her. I also know that she could be blessed to return to her Heavenly Father. I am writing this in an effort to continue processing this event in our lives, in an attempt to elicit prayer for this baby and babies everywhere without families or medical care, and to encourage everyone to find a way to help the "least of these".

Today my mom introduced me to William. William's family is trying to raise money to bring him home. I do not know these people personally and have no more information about them than what is presented on their blog. If you are interested in finding out about William, I invite you to take a look at their blog. William is an example of a baby and family with a need. http://specialneedsbaby.blogspot.com/

In the meantime, please pray for Baby M. Pray that she will not suffer, that she will experience peace, that her birthparents would experience peace and know Christ, and that the people who know her will be blessed by her life.

Constantly Composing

I am plagued by an inner monologue of constant correspondence. When I was younger I spent alone time pretending to be doing television shows and giving instructions to large groups. I taught people to put on make-up, shave their legs, make toast, etc. Whatever I was doing became an instructional session. Today my thoughts are writing letters, emails, and blogs. Yesterday, in the shower, I wrote a letter to a high school friend, and today while I was sweeping our bedroom, I wrote a letter to Anara's birthmom. I have written numerous letters to our local grocery store, the city on behalf of our neighborhood, my daughters, the local library, my husband, parents, grandparents, friends, strangers, agencies, foreign countries, thank-you's to police officers, ..... The tragedy is that I never actually write anything. I have all these grand ideas and great words that never see paper or computer. I wonder how much impact some of these could have - maybe not as much as I imagine. I could never actually send as many emails/letters as are in my brain, but I certainly could send a few.

Lots of things keep me from writing these letters: time, energy, the fact that it never sounds as good on paper as it did in my head, and worrying about people's responses. Worrying over responses and how I will be interpreted is definitely prohibiting my letter writing. For example, would the cashier at the grocery store, whose line I always try to go to, think I was a freak for writing her a note? Would the company really make any changes to the store if I reported on good/bad things I observe? Would my high school friend forgive the fact that I never took the time to be a good friend and call regularly? I am not sure why these letters are in my head (some days my head fills with post ideas for the blog that never ever appear), and I am not sure what I should do with them. Maybe I don't need to do anything with them and this is how my brain processes, but where did the random high school friend come from? I think some should definitely be written and I am constantly making a goal for myself of letter writing - the real kind with postage.

The letter that I am most often writing and rewriting is a letter to Anara's birthmom. I write and write and write. I tell her all about Anara: how she is growing, what she likes to do, how well she speaks, how funny she is, the way she smiles, how she loves Violet, that she is better now, and that her mom made the right decision for her daughter. I know that if Anara had been born "perfect" she wouldn't be part of our family (we weren't the next family in line for a beautiful baby girl)? Would her mom have parented her or would she still not have had the resources available to keep her healthy and alive? In Anara's case she probably felt she didn't have a choice. Anara's birth defect was significant and there wasn't really a doctor or hospital specialized enough to care for her properly. It is incredible that Anara lived at all. Her urologist said that Anara must have the right "protoplasm". I would like to tell Anara's birthmom how clever she is and also of her stubbornness. It is probably her stubbornness and determination that kept her living (at least that is what I tell myself when I am frustrated).

We have a document that gives a name for the birthmother and birthfather. I have no idea whether it is correct, but at least they are names. Maybe someday Anara will be able to locate her birthparents with these names. Sometimes I wonder if I should try to do this for her, but then I think maybe it should be Anara's decision. I am not really sure how I feel. I think that if I were the birthmom I would love to know that my child was well and loved, but I don't know her circumstances and would not want to compromise the life she is living or cause pain. I think that someday I will write this letter - even if just to hold on to it.

Jumping Jumping Hakadakadare

Proof that Anara is finally eating

And gaining weight

(her stoma is on the left, suprapubic is the white tube hanging down

and the G-tube is the clear button on her belly)

Further proof of Anara's "Hub"ishness

Classic Hub picture pose (eyes rolled back in head)
Again
And againTea with a stranger at the museum Riding the "horsies"

Anara is actually enjoying bathtime (as long as we don't wash hair)

Violet's special dance

I have no idea what the subject line actually means but it is Violet's new, favorite game. She holds hands with anyone willing to play and starts jumping in a circle chanting, "Jumping jumping hakadakadare, jumping jumping hakadakadare." Anara likes to play as long as there is an adult involved and she isn't being drug across the floor by Violet.

This afternoon we are going to see Anara's urologist to have him inspect her suprapubic site. The skin is kind of nasty and seems to be pulling away from the tube. In other news, there are three possibilites for the catheterizing problem: 1. it might fix itself eventually, 2. maybe it is a small lip that he can knick with a scope, or 3. maybe it will require another surgery. We won't know for another couple months. We are waiting for the channel to heal more, her bladder to stretch and hold more urine, and to see if we continue having trouble catheterizing her when her bladder contains more than 100ml. We are praying for the 1st possibility and that God will resolve things without further surgery.

Am I a bad mom - 1st installment

I like the idea of this post so much that I am giving it its own label with plans to give it a recurring slot.

Am I a bad mom because my favorite part of the day is the second that silence overwhelms our house meaning that both girls have fallen asleep?

Am I a bad mom because it's 1:00pm and both of my kids are still in pajamas?

Am I a bad mom because today I cleaned the playroom and then refused to let the girls play in it because I wanted it to stay clean for more than 10 minutes?

Don't get me wrong, I absolutely cherish these girls but their early bedtime provides an opportunity for me to be independent for a few hours even if I find myself collapsing on the couch from exhaustion. I wouldn't have it any other way. Nate and I might be tired after putting the girls to bed but we still find ourselves smiling and retelling stories of their daily exploits.

The girls love their pajamas, but maybe I should be getting them dressed at a more appropriate time.

The playroom was disastrous. One toddler can do significant damage, but two can unleash something completely unholy. I resisted the urge to restrain them while cleaning and let them wander the upstairs while I separated, paper, puzzles, legos, play food, chalk, markers, crayons, and pads (from last week's incident). I thought if I worked twice as fast as they destroyed I could make some headway. I was actually able to accomplish this when they were temporarily distracted by the keyboard. However, once they walked into their newly cleaned playroom a switch flipped in their brains and they knew what they had to do - DESTROY. I took immediate action and carried them downstairs to distract them from their mission.

And now for some Violet quotes:

Lunch today was leftovers. Anara really enjoyed spaghetti last night so I decided to give her the remainder of the spaghetti and Violet had to suffer through leftover macaroni and cheese. Violet finished and had about 6 pieces of pasta on her tray. I asked her to finish them and she declined so I got her out of her chair and she went off to play. Anara spotted the macaroni and asked for "Deese" so I put them on a fork and gave the bite to Anara. Violet saw this and mourned the loss of these 6 macaronis for the next 45 minutes. Here are some of the things she said during this time... "I am going to pray to God to give me back the macaroni and cheese that Anara swallowed. Mama, I just really wish that I could eat that macaroni you gave Anara. I need to eat some more breakfast because I didn't get to eat that macaroni and cheese that Anara ate. God, please let Anara to give me back that macaroni and cheese that she ate and help Mama not to lose her patience."

"Mama, how's it going?" Me: "Good Violet, how is it going for you?" Violet: "Cool"

"Does Uncle Joel want me to sleep? Okay then, I will."

"Ummm.... chocolatey"

"Dear Jesus, Please help my bottom to get better and forgive me for not telling Daddy the truth." This was not after being spanked. She was praying about her diaper rash and the telling the truth part was totally random.

"I watch too much TV don't I? Then can I just play the computer?"

"Is Baby Jesus up in Heaven too? Does Jesus have a beard? Maybe when I get big I will like beards, or maybe He can just shave it like Daddy shaves his whiskers."

Detox....it's mom who pays

Today is the Monday following an eventful weekend; all of these Mondays are the same. It begins the night before with a bedtime later than usual, this results in an earlier waketime and finally it progresses into superhuman fits complete with inharmonic screaming and whining. I knew that this was coming yesterday when we decided not to make Violet nap. The course of events was reinforced by the allowance of too much sugar coupled with putting the girls down an hour and a half past bedtime.

An hour ago, while I was trying to make lunch, both girls were on the kitchen floor screaming and rolling back and forth from front to back. If someone entered the house at that point they would have thought that the girls had been stricken with some awful stomach bug the way they were convulsing and carrying on. There is some relief in sight. We are only minutes from naptime and I am hoping for longer-than-usual naps.

I wish I could capture this rare, animal-like behavior on camera for everyone to witness, but the camera seems to evoke rationality and the fits stop; I will have to remember this trick in the future.

Tomorrow will be better, and I will try to remember in the future that one more sucker can break the camel's back, and missing a nap to have more fun doesn't directly translate into more fun for everyone.