Your child was diagnosed with MCADD but will live a full life, with care

When we got the confirmation of my daughter's MCADD diagnosis, we had an answer for the crisis she had gone through, but I was terrified of being able to keep her alive. Five years out, she is indeed alive, and MCADD was not a death sentence. A butt-kicking experience, but doable.

Most children will be diagnosed through the expanded newborn screening, done shortly after birth through the heel stick blood tests. The nurses who have practiced for years often refer to the test as the PKU test, since for years that was the main illness diagnosed by newborn screening. Now, most states have expanded their newborn screening for metabolic disorders, and MCADD is about as common as PKU, and the second most common genetic metabolic disorder.  Loads of kids are diagnosed years after their births, when a younger sibling comes up positive on the newborn screening and then all other kids in the family get tested, and the family learns they have been successfully living with MCADD for years.  Regardless of how you learn about it, being told your child may die from a regular average every day cold, is indeed terrifying. The scariest day is when the parent goes to the internet to learn about the new presence in their lives, and they find websites describing the tragic stories of children dying when the condition was unknown. Armed with the knowledge that as long as your child never goes into a serious low blood sugar state, she will live, you pick up the pieces and move on, fear in your heart.

My daughter's stroke and cerebral palsy were caused by the MCADD factor, but are certainly not a common outcome for MCADD.  Hannah was not a gifted nurser, and her blood sugar went down slowly after her birth, so that 2 1/2 days after her delivery she experienced a metabolic crisis.  If we had a normal delivery she would probably have died and people might have called it SIDS, but since she was born by Cesarean section, we were still in the hospital.  Nurses charted her low temperature and took her from my room, her blood glucose was measured, they tried to feed her, and measured her blood glucose again, and again, and eventually charted "glucose IV stat" but it was not given for another 20+ minutes.  She became fully hypotonic, with absolutely no muscle tone, and experienced a metabolic crisis.  Doctors were baffled by her condition, gave antibiotics and monitored her closely, and about six days after she was born, we were given the MCADD results. At the time, no one expected there to be lasting complications, and the stroke was not diagnosed.  I had enough to worry about, being told that a few hours delay in feeding could kill her and that fever and vomiting might be cause for a hospital admission to avoid a hasty death. We came home without her, brought her home a couple weeks later, and I pumped breast milk for the next 18 months, since she never was an adept nurser.  I was terrified, I wondered if I should quit my job to stay home with her or try to get a nanny rather that putting her in day care, and I wondered how I could keep her alive if a world class medical facility nearly couldn't.  Three times I have taken her to the pediatric ER for testing and a glucose IV and three times she started keeping food down while there, recovered, and has never had to be admitted to a hospital for her MCADD condition.  Now that she is bigger, fasting is less risky, provided she doesn't fast for long or have other illness of a significant nature.  Day care was fine, in fact, given her CP, it was a huge part of her successful development to date.

If I could tell parents of kids with MCADD anything, it would be - you are good enough to do this. You really, really are, so don't waste any energy with fear and self doubt - just be mindful and do your best.  If you get here because you are in a similar situation, please email me for support. If you struggle with your fears of being adequate, get help.  If you are trying to be supermom, don't hurt yourself to do it.

I don't want to blame my meltdown on my daughter, but instead on how I reacted to her condition - but having a daily fear like this contributed in a big way to self medicating myself into a pain pill addiction that could have robbed my daughter of her mother altogether. Not cool! Not good parenting! I hope that other parents are smarter than I was, and don't let self defeating beliefs, the depression and anxiety that can come with family illnesses be part of why you sink under the weight of what is on your plate.  I wish I could go back and tell myself that indeed I was good enough to care for this child, that I was up to the task. History has proved that I was, so far, yet I didn't invest appropriately in my own health and well being and I very nearly blew it.  Having other family issues come along means I can no longer cushion the blows with pain meds and anxiety drugs, so now I must do it all sober, which is both harder and easier, and now I need not engage in further beating myself up for daily acts that affirm my negative beliefs. But I wish I had forgiven myself sooner and in a less gut wrenching fashion.  So my message to other parents who have similar burdens to carry, take care of you, so you can take care of the kids.  You deserve to be proud of what you do to serve your kids of every flavor, and to be good to yourself.

Bittersweet birthday without a Daddy, but still, a day to celebrate

Bitter + sweet = still sweet

There ought to be a mathematical formula for that but it escapes me.  We celebrated multiple times in multiple ways, including violently colored cupcakes delivered to her day care / summer camp class, sure to wind up even the most peaceful of kiddos.  There is a pile of real angst here, that for all the critical thoughts I had for Lord Honey not doing much to help me help Hannah, at least he showed up to the party on a holiday and now he doesn't do that.

For reasons that escape me entirely, I can't load pix directly from my ipad so I will have to do a bonus birthday post when I can jump that technological hurdle, but the fast facts are:

The Sophia the First talking castle - big hit
Cheap clip on earrings and amulets - huge hits
Bouncing at Jump Around Utah with the pals - another birthday party success


For me, my kids' birthdays are always a time for review, and so I looked back to Hannah's first birthday post on this blog, entitled Lucky, and indeed I know that I am. I love you, Little Bunny.

Who is miserable now?

So while I was away from this space, the physical space around me was altered by maturing and growing children.  Hannah is headed to Kindergarten soon, totally mainstream. Claire now wears clothes sized nearly to her age, Hannah, though still stick figure skinny, could actually get out of the big toddler car seat and into a 35 pound rated booster . . . but worse than that, is the vocabulary growth.  Claire made a witty joke about the womb when she heard Hannah morph the r in room.  Granted she is all for a low grade knock-knock joke as well, but when I recently offered her a bit of my cheese toast, she, observing my fruit salad topped with whip-its delight said "my eyes are on the cream." WTF? When first she said "what the heck is going on?" I blamed her environment and heaved more than one sigh of relief that the phrase came from a wretched popular children's movie.  Last week I promptly lost all my helicopter parent cred by showing her YouTube shorts of songs from Les Mis, which she now begs for daily.  Mommy can we watch Red and Black? And then Do You Hear the People Sing? Sure I say, until I hit upon a making of the movie clip, and got stuck when the costume director explained the color choices for prostitutes coordinating with the imprisoned slaves.  Oh yeah, Mommy, nicely played.  Now explain prostitutes, slavery and metaphor.  When I told Claire that Fantine sold her body I said she sold her hair and her . . . teeth.  True!  She did!  And some other stuff.  And then I had to decide that I wasn't ready to show them Les Mis yet. I don't know which character she would emulate (Javert?) but I don't want to find out.

things I'll regret saying in front of Claire

"That is totally freaking me out."

I said it a few weeks ago when Lord Honey played a YouTube video clip of dancing babies who also break dance, ride skateboards down flights of stairs, and roller blade.  All wearing things just short of wife beater t-shirts and gold necklaces, and with moves to match the clothes, so I was justifiably freaked out.  I knew immediately it was a bad idea because she found ways to use the phrase appropriately within minutes.  She stopped saying it eventually and I was somewhat relieved that she was less freaked out. 

Yesterday, as we drove away from the home of her future husband who was celebrating his fifth birthday in style, Claire used the phrase again.

Mommy: Did you have a good time at the party? Is Logan your boyfriend today?
Claire: He is my boyfriend every day. 
Mommy: You don't say that on the days when he hits you, or when he won't let you hug him at school.
Claire:  I always love him, Mommy.
Mommy: Well, I don't think you should marry him if he hits you.

Claire:  Well, sometimes he hits me because I freak out. 
Mommy: Why do you freak out, Claire?  I don't understand.

Claire: Sometimes I think he is going to hit me and I just freak out, and then he does hit me.

I am now officially freaked out, myself.

One more thing that is all my fault.

I put away the Childrens' Ibuprofen.  And the Children's Tylenol.  It is all my fault. that Hannah got sick again.

Every time I put away the purple stuff, within three days someone gets sick.  I tell myself it isn't so, that only coincidence could produce this result.  But time and time again I scoff in the face of anecdotal evidence and I put away the fever reducing medicines, only to have someone develop a fever in pretty short order.  I don't really believe in this kind of magical thinking.  My mother does, I know, and I've felt some pull toward it in my life certainly, but of course it makes no sense at all.  When I was a much more angsty young woman in my teens and early twenties, driving at night, I would always notice when for some reason streetlights would turn off as I drove under the light they cast.  I'd notice the pattern and then be unable to not notice.  I'd wonder if my ions were wrongly polarized or fate had a plan.  I would think back to when I'd learned that one developmental stage of childhood has a child wonder if she or he is the center of the universe - that they are the only real part and everything else is just a construct.  Certainly I was relieved to know I wasn't alone to have had these thoughts as a child, and toasted my good fortune in not being mentally ill or stuck in that phase (I probably toasted with quite a lot of cheap beer).  Perhaps I even drunkenly discussed existentialism, even though I hate philosophy.  I might have had deep thoughts, or just thought I did.  But how is it that now, at forty three and well encumbered with relationships with people that really bring home the concept that real is indeed real, how do I now believe that whenever I put away the Ibuprofen, my kids will need it again?  And even if I could make myself sick with my thoughts how am I making my children get strep or viral illness?

I live in a one hundred year old home.  Nothing about my kitchen is spacious.  My counters do not need piles of things that never go away.  OK a knife block, a hodge podge of long handled utensils crammed in a somewhat attractive but mismatched jar.  The phone.  The pile of baby bottle parts and binkies that will finally go away soon.  Hannah's carnitine, and syringes to measure it.  My vitamins and supplements, lest I ignore them for months at a time.  I don't need medicine for potential use to remain out and at the ready.  We don't need it everyday.  We possibly need it for five days at a time, longer when the girls split their illnesses up rather than share them.  I don't want the bottles to live there.  So I hired the most powerful sorceresses I could find to cast a banishment spell with their sparkly pink wands.  It better work.  I'm keeping the bottles on the counter until next month, though, just in case.

2010, bullet by bullet

Numbers to explain the year in review:

Health category:

• therapy sessions for my daughter:
•      PT - about 45
•      OT - about 35
•      Hippotherapy - about 20
•      bonus play time at Little Gym -  about 30
• Doctor visits for daughter - 10 ish
• Doctor visits for me - skip that
• times my children went under general anesthesia because dentists don't do "light" sedation on people under 30 pounds - 2
• kinds of brain damage identified in immediate family - more than, one for hell's sake
• physical therapy sessions for me:
•      neck related - 10
•      broken butt related - 8
• physical therapy sessions where I went to cheer my mom on - 3
• number of times she didn't remember my name correctly, before therapy - 2
• number of times she said she didn't want to do therapy - a bunch
• number of times she did it anyway - enough that she gets an A++ for effort, and will be released home in a few days, having achieved more strength than she had pre-stroke
• number of times I've felt inspired to chuck in the legal job and become a PT - a whole bunch
• Jazzercise classes attended: 50 or so
• Pounds lost - about 20
• Months not spent doing regular exercise - 6
• Bra size letters down - let's just rate this as moving in the right direction.  If I were one of those medical weird ass types (as in "patient denies pain" WTF?) I'd say the bra size is downgoing
• Number of times I creatively visualized punching "STROKE" right in its stupid ass face while doing a punch move in a Jazzercise routine - at least 150
• Number of times punches made me feel infinitesimally better - 150 

• twenty zillion - number of times I had to explain to someone what Hannah's hand braces and taping methods are, how different methods work, separately and together, and what a cast is doing on a perfectly good arm
• a few - number of times the above made me cry when I really didn't want to
• a whole bunch more than a few - number of times I did the explanation without tears because I rock.  Well she rocks, and I have been practicing.

Wealth category:

• Raises - none
• Expenses - up, up and away
• Vacations I paid for without charging the whole thing - one big honkin' trip to Disneyland, in my minivan, because I am that cool
• Bankruptcies, job losses, unpaid bills (debt floating on credit cards excluded) - zero. We'll call this a win, because fortune didn't frown on me here, and the credit card debt far predates 2010, so it doesn't really count as an annual statistic, right?

Happiness category:

• Belly laugher now identified: Hannah is a belly laugher.  She also hits people a lot and honks your nose while looking you right in the eyes to watch how you react.  Claire was very much a smiley baby but Hannah is more of a laugh out loud baby, and I have to say both traits are quite pleasant in one's offspring.
• Husband has not been killed by me or anyone else.  This is probably good.
• I can't say I didn't try, because I really did.  But it made me tired.
• Claire says I am the best Mommy in town, and she loves me a lot.  She loves me "forty-three" - I think she arrived at this number based on my age, which is the biggest number she has spent any time pondering. I'm trying to teach her about eleventy zillion but she hasn't grasped that concept yet.  Both children seem quite fond of me but Hannah only recognizes two and five, so she doesn't quantify her affection for me, but I think, in the fullness of time, she will. 
• Debris removal shoes may be available soon. 

2011, bring it on.  You only scare me a little bit with your potential ass-kicking.  It's just a flesh wound. 

Hell's bells, I don't know where the time has gone. Mo specifically asked me to write about the results of constraint therapy for Hannah, and so I will, but first I'll give my excuses for why I am so very absent. I had meant to blog from Disneyland, but I was really in a lot of pain after oral surgery to extract a tooth and begin an implant process, so every time my kids were down and I could rest I didn't feel like getting on the computer. On the night before Thanksgiving, I slipped on ice carrying Hannah, two glass bowls and the school photos, all of which needed protecting and so I torqued my body in the air to not land on Hannah and thereby tore my hamstring.  When folks picked us up and dusted us off the baby wasn't even damp. I win! I really seriously injured myself though, so now when I get my kids down in the evening I need to lie down and try to elevate my hamstring/thigh above my heart to reduce swelling (not easy). So, I beg your pardon if I normally comment on your blog, or if I normally give you something to read, and I've been letting you down.  I look forward to things getting better in six to eight weeks.  Yeah.  Good times.


Hannah did three and a half weeks of constraint casting. The half week was added because I wanted someone professional to take the cast off, because my daughter is a smart cookie and if we do this again in six months I didn't want her to remember that I could take her cast off, I wanted it to be done by a therapist. We definitely see improvement in the use of her affected hand/arm. I would absolutely recommend this therapeutic approach. Hannah was upset but less so than I expected. I was a bit wound up for a while before the cast was put on because I thought she might cry for days and we would wimp out and give in and take it off. She really was fine at the outset, but she did have difficulty sleeping, and staying asleep, largely because the cast literally weighed ten percent of her tiny body weight. Those of you with bigger kids might not have this issue. My treating therapists have a child wear the cast and simply go about their daily lives, we didn't do the six hours of special OT that make up the basis of some programs in other parts of the country, so this was probably a lot easier. Hannah's biggest challenge was with eating, she simply would not use her right hand to put food in her mouth and she seemed indignant that she would be fed like a baby, but she did let us feed her. I was flexible about letting her use her binky more than we had, since I've been trying to reduce use and encourage more speech, but she foxed me by getting her day care minions to put her binky in her mouth. After a morning therapy session I dropped her at the day care and stayed to eat lunch with her so of course I fed her.  Her little friends gathered around us to monitor the mom in their midst. I kept the binky clipped to her shirt so she'd have to use her right hand to get her binky in her mouth. When she would try to do it the movement really exposed that supination is something that we really need to work on but she developed a work around. I saw her look at her two favorite boys, and say "binky" and they both leapt in and tried to be the one to get the binky first and get it in her mouth. Minions! At age two! She has since moved to the next up aged class and now is at the bottom of the pecking order, where the toddlers take her binky out of her mouth and say "binky in your pocket, Hannah!"

Results: extraordinary. the first week after removing the cast we were in Disneyland so I couldn't observe much in the way of the results because Hannah was not often in a place where she might pick up smaller items. I did buy some toys to encourage bilateral tasks - cookies in little plastic "jars" and things of that nature and we worked on those in the car. Now that we are home, I can see more of what she is doing with her affected hand. What is most noticeable is that she uses her hand much more automatically, or when necessary, she uses her hand to hold the thing she picked up first then picks up a second item with her good hand. She is much quicker to use her right hand to balance a cup or bottle, or hold a bowl of Cheetos while she feeds herself with her good hand.
 

Go Righty, go, get that foam number. 

Claire, this season

This is how she looks when she looks up at me, always full of love, unless she is giving me the stinkeye. Mostly she says I am the best Mommy in town. Recently she said "Mama, this sandwich is overcooked." Later, she affirmed I was still the best Mama in town. I was relieved.

I shamelessly use Claire to stimulate Hannah into crawling and doing upper body weight bearing through the blanket tunnel, because it appears to me that she is also enjoying herself.



Claire has an accomplished stinkeye. You'll will never be unable to tell what this child is feeling. Thinking, she might be able to hide, but strong emotions? You'll know.



She likes to be the little Mommy sometimes, helping her baby sister. Sometimes this means grabbing Hannah by her hoodie and pulling her down, but that certainly keeps Hannah from sneaking into the street while I get things out of the car.



This day of face painting in late summer was a preview of the child she would become, when she graduated to the Butterfly class in her day care. For the record, Butterflies learn to lie on the first day (teachers deny this, parents agree) stop taking naps, describe those kids who fall asleep during "quiet time" (a movie watched while wearing a blanket) with actual scorn, and are ever more adept at drama. Butterflies need a bandaid for all injuries, bleeding or not, and know everything.

Tattoos for the Terrible Twos, like they need more attitude

If you squint you might see the remains of a pink and purple butterfly on Hannah's inner arm - tattooed on with airbrushed paint at the local street fair last weekend. The point of putting it on her inner arm is to inspire her to twist her arm to see it, because evidently supination is difficult for folks with her condition. The other idea is to use an interesting watch, worn on the inner arm, but we haven't gone far with that technique as no watch is small enough to put on Hannah and Claire keeps taking the watch we did get but have yet to find a pokey tool to size it down.





Now don't all go running off using this idea until you check out the paint. I did the tattoo on a whim, and although I would have liked it to last I was also secretly pleased that it came off in case it turned out to be melamine and BPA-laced made in China paint. I am a little gun shy about my "creative" therapy ideas after finding out that the receipts I'd been saving and using for about nine months to encourage opening and closing her hand were likely a bigger load of BPA than all the baby bottles we didn't use because I at least knew to avoid them. (Google BPA in receipts to get a gutful of data) The only bright spot in the great OT receipt fiasco at my house is that Starbucks typically has very low or no BPA so a lot of our receipts were clean. Ahem. My machiato addiction may be bleeding my checking account dry but at least it is not poisoning the baby. Yet.

Still Life with Laundry - minus the goose poo

In honor of how full my head is these days, I decided to join in NaBloPoMo (National Blog Posting Month) this month. I've made a commitment to post every day for a month. Think of it as a Roman vomitorium if you will, since my head is all spinny and full of stuff and it needs to come out, and now you get to see it, so maybe I'll see less of it myself. The theme of September for NaBloPoMo is Art. I don't think I'll really get in any trouble should I stray from the topic, but at least we'll begin that way. Art.

Still life with laundry. Notice the clean baby pants.

Susie homemaker tip of the day: if any of you let your toddler fall on a goose poo, simply place a plastic bag on the car seat to minimize seepage, and use Oxi-clean spray on the stain. Voila! Lord Honey and I had quite a dispute about whether or not we could wash Hannah's one and only pair of closed toed shoes, made by a manufacturer for use with orthotics, and Lord Honey's choice was to throw the shoe in the washer. I freaked about potentially ruining my best shoe option and the only one that can go to hippotherapy with a brace, and opted to hand wash the sole in the sink with Oxi-clean, figuring that poo is poo, and if I can wash baby poo, I can wash goose poo. It is, after all, organic. Lord Honey wondered why I let Hannah wander about the goose poo despite her penchant for sitting down without notice, but I thought it a good OT activity where I would stuff a large piece of bread in Righty and let her pull chunks off with Lefty. In my mind, I make every daily opportunity for two handedness something noteworthy. And since I now found out that one of my self created OT activities for Hannah, which involves saving all receipts and giving them to her to scrunch, toss, place on Mommy, and use to practice opening and closing her right hand, is now an activity worthy of OSHA scrutiny, since apparently most receipts contain high levels of BPA. So having removed BPA from every cheap plastic cup or bottle my girls drink out of, I have instead exposed them and jeopardized their future offspring by by encouraging their play with Mommy's little scrunchy papers. Arrgghh.

Enjoy the still life. More to come this month.

Sing a song of sixpence, and heroin, and studs

My daughter Claire never stops talking. Or singing. My husband has an addiction to YouTube and plays videos through pretty much every meal, and after until I tell him to stop and do something else. You expect Claire to sing a song of sixpence, or other children's ditties, at age four. You expect her to sing a few verses of her parents' favorites or her favorites (although I never picked up much from Wagner's Ring cycle, but my parents weren't very cool). Currently, Tom Petty's The Waiting is her favorite song, and she has yet to catch on that every time she asks her dad to play that on the laptop that he makes her wait. On Saturday in the car we played most of the soundtrack to Oh Brother Where Art Thou going to and from Hannah's hippotherapy, and not unsurprisingly, she declared Big Rock Candy Mountain her new second most favorite song. But the current song you most hear from her is the Mighty Mighty Bosstones' Royal Oil, which I am fairly certain is about heroin. I find it somewhat disconcerting that she is popping around the house singing "sleep down in the soil, nothing comes from nothing comes from royal oil."

For reasons no one can really explain, all little girls love the film Grease. Maybe a young hot John Travolta explains it, but I digress. Claire's little friend who is roughly her age has Grease and MamaMia and loves to watch her movies and sing along. I imagine we are celebrating an anniversary of the film, but a theatre in our area will be showing Grease the Sing Along movie, and so along with my friends, and Claire's friend we are planning to take Claire to see the film. I don't really expect her to follow the story entirely, but we have in the past shown her the video on YouTube of We Go Together and she thought it delightful, so I agreed to take her because I thought she'd be highly entertained by a theatre full of people singing along to every song (I will). So, to help her know the songs better so she could join in, we decided to school her in some of the numbers she didn't already have familiarity with. First up, Lord Honey picks You're the One That I Want, which begins with Olivia Newton John saying "tell me about it, stud." Immediately Claire says "his name is Stud!". I try to downplay things, tell her it is just a nickname, like when I call Daddy "Muffin." Next we played Summer Nights, and my face turned a funny shade of pink watching the hip thrusts. Lord Honey offered to play Look at Me, I'm Sandra Dee and I had to put a stop to it.

I'm telling myself she'll focus on the popcorn.

Motherhood, juxtapositonally speaking

My sister made a point to tell me Happy Day for Claire's birthday, and told me she always feels extra special on her kids' birthdays. I felt special but sort of bitchslapped too, so much so that I ended up crying at the bakery when I picked up Claire's fancy cake for the family party. I thought of how I'd brought home a cake from that bakery when Claire got home from the hospital, and how much bigger it was than her tiny wee head, and how addicted I became to that buttercream frosting, making her at least %25 butter for the next two months when I stayed home with her, trying to fatten her up.

It had already hit me some on Saturday, with her party coming up and me racing around doing party prep errands on a sunny spring day, high on my SECOND Starbucks Venti Caramel Macchiato, blaring Tom Petty in my minivan, and feeling the love. Jason had said something like "I wish I'd gotten this much when I was a kid" and I said yes you do, everyone should be so lucky to be as loved and cared for as my dear girl. It all came together in some weird "I won't forget this moment" sort of way, with the pleasure of giving her a great time and making her feel cherished and important, and the sun was shining and then came the juxtaposition of some of my old punk rock playing on the iPod, followed by Tom Petty with me screeching along with "oh baby don't it feel like heaven right now, don't it feel like something from a dream?" Yes! It is heaven! I get this lovely creature to spoil and fawn over and cradle in my arms, and then I remembered how I almost didn't get her at all. Once it hit me I couldn't let it go - how close I came to not getting to have heaven on earth. My doctors had no idea my baby was struggling, since I measured normally and the heartbeat was strong, but she is only alive because I asked for that extra test, just because I felt that I didn't feel enough movement. As soon as they slapped an ultrasound on me it was apparent the baby was not growing and needed to come out and be fed. When I asked how they could have just been willing to let me go home from the clinic that day, and what would have happened had I not sought extra testing, the doctor looked me straight in the eye and said "stillbirth."

I am normally a glass half full kind of gal. My glass has pretty well stayed on the full side except when it comes to motherhood. I should be able to just revel in the result, because the results I have are indeed astounding and glorious. Not for nothing did I make up a song like "Claire the Magnificent" to croon to her at night. Something about motherhood brings out the naked part of my soul. Any of you read the Narnia books as a child? When a character who has done wrong, really wrong, meets the Powers That Be and the all powerful Aslan rips through the extra bits right down to his soul, all naked and slippery? That is about how this motherhood gig goes. I am tooling along with just the joy, on a sunny day, in my minivan, and smack here comes the other side of it all, the fear and the worry and the oh-shit feelings. My people tell me how wonderful I am to have noticed and taken action, and saved the day for Claire, but it doesn't always look that way inside my head, through the PTSD. They tell me this too in relation to Hannah, that I noticed the signs of her CP before her doctors, before her father, and jumped on the therapy bandwagon at the first possible moment. I keep remembering how shocked I was that there was a problem for either of my kids, how inexplicable it all seemed, how close I came to not getting that first baby at all, let alone the second. I think sometimes how if I had not planned to breastfeed my second baby, despite all the motherfucking pumping and hassle with feeding Claire, in fact probably because how hard that all was I was determined to breastfeed baby number two and get it right, but if I had chosen to just formula feed, Hannah might not have CP at all, because she would never have dipped too low in calories learning how to nurse. Am I a good mother? Well, of course I am, but on the inside, I doubt, I wonder, and I feel guilty as hell. And then here comes that joy again, when I snuzzle them on the backs of their necks.

Twice this week total strangers asked me for advice about the big parts of motherhood, how to pick a day care and whether to use a day care for a medically fragile child. My name gets given out as an example of someone in the know. Fuckity, fuck, fuck I say! I don't know anything!! Of course I give advice but still, on the inside, I am full of self doubt. I keep wondering if I'll get caught faking.

Claire now has a new favorite song, because we played The Waiting for her on the way to the party. And now the poor girl at Mrs. Backer's bakery thinks I am insane since when I ask her to prepare a cake for us, I find myself telling her why I have to have a Mrs. Backer's cake on the actual birthday even though Claire would be happy with a Costco cake or even one of lesser quality, but I must have the buttercream icing that says "Claire came home" to me, and always will.

Friday Haiku - A birthday is coming soon, but not soon enough

In other home news
Claire has learned to do zippers
Am I obsolete?

Alas, I am not
throughout the house one can hear
Mama, wipe my butt!

I'd rather she did
or at least use the word bum
I'm not successful.

Three is much harder
than terrible twos as claimed
I'm glad she'll be four.

Perhaps she will stop
calling me poopy Mama
and laughing wildly.

A box of chocolates

Sometimes you're the bug, sometimes you're the windshield.

My dad is having both a colostomy and hernia repair surgery on Monday, my mom is officially flipping her wig with worry that he won't live through the procedure. I have agreed to spend the MLK holiday holding her hand while she waits for the procedure to be over. I don't have the easy relationship with my mom that I hope to have with my girls.

Claire has strep, now recovered enough to sass back at every opportunity, and to not have earned my automatic sympathetic mommy response based on illness. And better enough to steal another chapstick from her dad, and ruin one, again.

My neck, fused twelve years ago after a car accident, doesn't like change. My neck is generally OK, but responds badly to increasing the standard level of exercise, decreasing the standard level of exercise, or holding a twenty pound person more than normal, say, when they are either sleepless or sick, or both.

Every night this week except the last, one child or the other robbed us of a couple of the hours of sleep we had hoped for.

However, on the other side of the box of chocolates, we have these things:

Claire is better, having been on antibiotics for more than 24 hours, and so far, Hannah has not shown signs of getting strep, which would likely mean a hospital admission as I doubt she would eat enough if her throat hurt that badly. I should not speak too soon lest I anger the Gods and bring down their wrath, but I am hopeful that I will be vindicated as a breastfeeding lactivist who believes the breast milk helped stave off the dreaded strep.

Hannah is a wee bundle of iron infused energy, expect when she is all wiped out because I can't seem to stick to her schedule on weekends.

I really enjoyed spending extra one on one time with Claire while she was sick. She wasn't too sick to enjoy herself, and she blooms with extra attention. Mostly I loved being able to hold her close and nuzzle her wee red head, and fondle her soft sweet skin, and squeeze her tiny legs, and all of those mommy based feelings that make no sense to anyone else but delight the mommy way down in the core of her soul. Yum!

So don't think it is all a vale of tears at Chez Ginger. It's just that classic mix of good and bad, hard and easy, bitter and sweet that makes up the life we have.

Nuts, I say

I have to thank you all, once again, for assisting me in sorting out my madness. Thinking about what I'll write helps me enormously in the let's get it all sorted out process.

Wee Hannah has been in her crib and out of our bedroom now for eight nights, all nights in which she lived until the morning, so I am delighted. Four of those nights she slept from the time we gave her the midnight milk snack until I woke her or she woke on her own at the time we get up. So I am now officially delighted but slightly wiggy, especially when I walk past her old bassinet and see it empty, which is unnerving. At Hannah's current weight, she can now go eight hours of fasting before she should burn up all her glycogen and have a metabolic crisis. But I am paralyzed by fear: what if I sleep in? What if she is having a growth spurt and has extra caloric needs? What if a fever comes upon her and that amps her rate up but the grogginess keeps her from waking herself up as she normally would if hungry?

Imagine you are Keanu Reeves in Speed, and Dennis Hopper narrates your situation and says WHAT DO YOU DO?? WHAT DO YOU DO?? You have a sleeping baby with a weird metabolic disorder. She is sleeping. You think she should eat. What do you do? This has weighed on my mind since we brought her home from the hospital and started setting the alarm for three hour feedings. She is at the day care. A new person is in the nursery today. She doesn't understand the MCADD diagnosis. What do you do? And it colors my view of the future. She goes to school having refused to eat much because she has to do her hair. She skips lunch because that is what skinny girls do. The dinner I make disappoints her. What do you do? You want her to sleep all night without dying so you pump milk right before bed and have the bottle handy, because breast milk can sit out for a while and be served room temp when the baby squawks. Now the nutritionists and docs want her on more calories because her growth has bottomed out. What do you do?? Do you take away the food source she is familiar with and hope she takes to liver and onions?

I am quite certain I have often said "don't borrow trouble" to my friends and family when they want to worry themselves into a state. I've said it to myself. I've said it many times since we had Hannah. I'm not very good at following this advice.

I've now been pumping milk for her for seventeen months. I loved it when she still breastfed but she is a smart cookie and knew bottles were easier. Devastated by her choice, I nonetheless continued to make milk. I am winding down and planning to stop fairly soon, but I am loaded with guilt over my choice to stop. Loads of breast milk is not enough for a person of her age, so she is now anemic and needs supplements. Iron based formula would help out here, but if I have a personal belief that Nestle scientists can't possibly do a better job than me in making Hannah designed milk, should I really switch her over when I have months worth of milk stored in my my extra large freezer? And yet I am so excited to throw away the last remaining milk stained nursing bras, the hands free pumping bras, and get that time back in my days. I'm tired of how much it hurts to have largish sensitive body parts pulled on for hours a day. I'm ready to be done. I feel no small amount of joy in believing I've suffered the pumping to give her something Enfamil can't. And a normally developing breastfed baby would at this age be just at the low end of normal in not falling in love with food, and many toddlers are said to exist on two noodles and a kiss. We are not alone in this, we just also have CP kicking up the burn rate and MCADD telling us to have a bottle of milk handy for whenever we might slip some in. I can't really have a waffle and two strips of bacon on the bedside table for midnight snack. Well, I could, but that would be for me.

Or, perhaps, nuts.

Blog for a preemie, my preemie

No one has a good explanation for why premature births happen so frequently, or with such horrible consequences.



Claire came early. Only five weeks early, but early enough to buy a four week stay at the "hostable" as she still calls it. My pregnancy was complicated by low fluid once, which had bounced back, and some general ongoing extreme nausea, but no other signs of trouble. At a regular checkup I was pronounced good to go, but I asked for a non stress test (my first) because I thought I should be feeling more movement despite the anterior placenta which I had been told could be blocking some sensation. We did the non stress test, a quick ultrasound to check the amniotic fluid (really they were looking at size but didn't mention that) and I was asked to go in the other room to talk to the doctor who had reviewed the results, and diagnosed placental poop-out. He said he wanted to admit me immediately and take the baby and that the baby would be small. Basically I was floored, I had not seen this coming at all, and neither had they. I couldn't find Lord Honey initially since we had not yet started having him carry my cell phone in case of emergencies. Due to my control freak issues, I did insist on being allowed to leave and pack my own stuff and come back in an hour. When it was obvious the next day that my body did not feel ready to have a baby, and induction was not working out, we agreed to a c-section, and got our three pound two ounce girl, red hair already apparent.

My sister says she was worried about Claire until she saw her and looked her in the eyes, and she knew she'd be OK. I didn't know that yet myself.



I was terrified, I was exhausted, and I felt guilty for every unhealthy choice I'd ever made. I never expected a premature baby. I wondered if I might be unlucky enough to be on bed rest, because that was my idea of hell, and I worried about Downs because I was thirty eight but it never occurred to me my placenta would poop out and I would have a low birth weight baby. No one can say why this happened. Some placentas just don't work for the long haul. I had health care before and after the pregnancy. I took pre-natal vitamins. I don't work at heavy labor, on my feet, and didn't then. I wasn't exposed to toxic stuff. I wasn't the victim of violence. We just drew the short gestation straw and got intra uterine growth restriction for no known reason.



Everyday she got just a little bigger, and then came home, and she hit five pounds. Then six and seven and at some point we stopped counting obsessively, when it was clear we wouldn't move into the big girl car seat in her first year, or second, in fact we moved her at nearly age two, when she might have been nearly twenty pounds.



I don't have any new ideas about what you can do to fight prematurity. I do give money to the March of Dimes, who funds research in this area, and in others that affect my family, such as metabolic disorders and cerebral palsy. Be aware and be active about health care issues you think need support, and love those babies. Claire was about the same weight as the famous Maddie at birth, although she was weeks older. Even after a year Maddie was still at risk for complications that ultimately cost her her precious life. Many other stories abound on the internet, and you probably know some affected families yourselves. I have a colleague who right now is chasing back and forth between two hospitals for her twins who were born at twenty nine weeks. We appear to be one of the lucky families, who went through hell and maybe still have PTSD reactions but who brought home a baby who became a strong and healthy child. I wish Claire were the size of her peers, instead of just barely bigger than her baby sister, and just going into 2T clothes now at age three and a half. I wish she were not a head shorter than her classmates or that I felt confident she would never again battle reactive airway disease of any kind, but again, we are lucky, because when you meet her, you kind of get the impression she is capable of just about anything.

Motherhood, please be nice to my friend

I read some lovely posts today, such as this one, about mothering and so on, and then I also spent some time with a friend who is at the beginning of an unplanned pregnancy. Wowie Zowie! Depths of despair, for my friend who had hoped she was learning not to make so many unwise choices, and yet she also is full of all the feelings we mothers have that are purely and utterly joyful. Katyboo called it an amazingly awful, heartbreakingly fabulous roller coaster, and she is so right. I am saddened that my friend will have to be mother and father to this child, and that it will be the second child for her who doesn't get to live with his father and mother together, because my friend and her then fiance could not make their relationship work for the long haul. Yet, she is a wonderful mother, and her son is one of my favorites in my daughter's school. Everything about this friend is geared towards loving being a mom. In fact, if I had to tell you what this person wants most in life, it isn't anything super exciting, she just wants a husband who comes home to her and more kids. I know this friend will face some extra trials for being single, and will have to work so very hard to teach her children that unplanned doesn't mean unwanted. I do hope she succeeds.

update on girls

I have been unable to post lately, since I keep finding myself too angry, anxious, or tired to share the thoughts bouncing in my head. For example, tonight when I came home my husband had been trenching the back yard to install a conduit for electricity for the new garage, cut a sprinkler line, and had to shut off all the water while he fixed the pipe. Immediately Claire and I were desperate for water, just because we had none, had to squabble over the half liter bottle I dug out of my gym bag out in the car, and then I had to cook and clean up without water. So I will simply update the blogosphere on the girls. Easier and more palatable.

Here they are in all their sisterly glory, posing on the sofa I was getting rid of, Claire was quite concerned when I told her I was getting rid of furniture as well as getting new things - I'd asked her to pick up toys with me to clear a path and she said "Mama, if they take these toys with the sofa I'm going to be very mad" quite matter of factly. She spent the rest of that day speculating what I'd be getting rid of next, including Hannah.



The face of an angel hiding the secrets of the universe. On Sunday she saw a picture of Barack Obama sternly observing an Israeli-Palestinian handshake of suspicion. We had a nice time when she asked me "What's Obama doing" and I gave her a brief lesson in the intractable nature of mid-East politics. She skipped off singing her newly minted Obama song, which made me glow with pride. After I sorted out all the girls' summer clothes she spent the rest of the day asking me what she could wear for fall. Today she told me "I don't want to go to my birthday, Mama, because I want to stay new." She has been very concerned about being old, and thinks avoiding birthdays is the way to handle the issue. Middle aged women might agree.



Hannah is as always charming, charming, charming and binky flinging just for fun. And she wants all the broccoli. I am fairly certain she is saying "bo" for book, and I think I heard her say "no" but I wasn't sure why. Despite balance and strength issues she is actually able to stamp her tiny foot in aggravation.



Alien daughter mind-melt vs. infantile death grip. Death grip wins.



Come closer, might I poke you in the eye or examine your teeth? Using my super sharp claws? Look into my eyes. Do you feel sleepy? Look deeper, deeper. I'm going to head bang your mouth! Squee!



OK, I have to go worry about how I can't refinance my mortgage due to plummeting home values, wonder why I have booked a family trip in late October as the suspected pandemic might hit full swing, and obsessively Google vaccine related issues on an internet bogged down by everyone else doing the same damn thing. Please excuse me.

Haiku Friday - give me fever

Eternal questions
is this fever porcine 'flu?
or just the teething?

Hello big new tooth!
Are you an evil demon?
Bringing your wrath here?

Must I keep her home?
or can she go to day care?
what does it all mean?

Will I ever get
a crystal ball to tell me
what I need to know?


Haiku Friday is at its new home. Enjoy the 'ku!

She's not disabled, we're just visiting

As we are on our way in, a mother carries her baby out on her hip. Baby has a cast on her leg. Baby is nonplussed, mom is on a cell phone. I am not nonplussed, I am shattered. On the way out, a salesman is on his way in with an adult sized prosthetic leg. I check my legs just to make sure I've got two to go.

Today my baby had her evaluation for services at a Shriners Hospital. Hemiplegia as a form of cerebral palsy is considered pre-orthopedic because if left untreated, spasticity in muscles will create an orthopedic condition that requires surgery, so my daughter can get services there even though she doesn't actually need their higher end stuff. We get to skip things like the conversation I overheard at the nurses desk "we'll do the muscle biopsy before the skin." Our physical therapist had warned me the visit would last about four hours, so at least I was prepared for that, but I cried six times today before I even arrived, then lost count of how many times I came to tears with the nurse, the care coordinator, the orthopedic surgeon and the neurologist. I start each new interview with "I am a cryer. You can write that down if you like." It will be true the next visit also, and maybe the one after that. The staff were delightful and remarkably calm. Something about being funded privately really changes how they handle patient time and interaction. The facility is new and clean and quieter by far than the other children's hospital. I did enjoy the way the young patients interact. Hannah got a wave from a young man flying by in an assisting device I don't know the name of yet, I can see how the wide open atrium room for PT will be great for us when we teach her to run or to ride on a toy, teach her things the rest of our kids can learn in the living room or backyard.

I realize these nearly four months we've been working on this have been an easing into the world of getting ability out of disability. Hannah has not stood out in her nursery as anything but super cute and smart, because only now at almost twelve months are her peer groups jumping up to creeping and walking really making her look different and stationary. I ponder how it will feel when she sits in the middle of a room of walking babies. Its a damn good thing she has those advanced verbal skills. Maybe I should get that informercial product "Teach Your Baby to Read" so the toddlers will rely on her for advocacy for snacktime rights and notepassing during naptime. I know she'll use her powers for good.

If you are lucky enough to have a free pediatric orthopedic hospital in your city when you need one, well, fantastic! It's that whole "if you need one" part you have to watch out for. I knew I needed to be there, and I am glad I went, but let's just own up here - I was not prepared for the vision of the wheelchair chop shop, where devices are modified to meet the needs of each patient. This adds up to a lot of spare parts. I wasn't prepared to see the kids in the beautiful, clean and well lit therapy room and see my future. Furious is not too strong a word for how I feel. Terrified that I will fail to to get the job done in every way that matters for my daughter. Horrified that all the "special" time I spend with her will be the drives to Shriners, the Early Intervention meetings, the therapy sessions, the coaxing her to wear a brace or do the next move or try the next step. Sorrow, for the good health she doesn't have. Grateful to have all this help and furious we need it.

Our prognosis is still good, in fact great, but it was again emphasized to me that not all kids like this crawl, and not all kids like this get out of the brace she will certainly benefit from when learning to walk. Um, this part was new. Every time folks tell me how great she is, I think that she'll be one of those people you hear about who have CP but you almost can't tell. I didn't think the brace would stay. And it might not. And they'll custom make it after casting her leg and we won't be using the equivalent of a 6-12 month old baby shoe. Hooray! And oh fuck I need air. It was the best of times, it was the worst of times.