From the ashes

At the therapy center where Lucas goes, on Thursday nights he attends a feeding clinic. For two hours, he and a group of children sit around a dining table with various therapists, and they attempt to eat a variety of foods. We have been attending for several months, and in that time, all of the children have made great strides.

Adjacent to the room where the children are, the parents watch from a webcam linked to a monitor in our room. Slowly, over the course of weeks, friendships were forged. We've laughed together, we've listened to each others cries. It has been an amazing journey.

There is a huge comfort in connecting with other parents of special needs children. They are other parents who share the same worries, fears, and hopes that we have. They delight in the excitement of tiny milestones reached.

It is amazing to know that I am not alone. Others have been there. Others are arriving. We're all finding our way, slowly and with carefully placed steps. This piece really resounded in my heart today. I have printed a copy, and put it in the front cover of Lucas' binder of medical documentation

“Jacob, where do you find the strength to carry on in life?”

“Life is often heavy only because we attempt to carry it,” said Jacob. “But I do find a strength in the ashes.”

“In the ashes?” asked Mr. Gold.

“Yes,” said Jacob, with a confirmation that seemed to have traveled a great distance.

“You see, Mr. Gold, each of us is alone. Each of us is in the great darkness of our ignorance. And, each of us is on a journey.

“In the process of our journey, we must bend to build a fire for light, and warmth, and food.

“But when our fingers tear at the ground, hoping to find the coals of another’s fire, what we often find is the ashes.

“And, in those ashes, which will not give us light or warmth, there may be sadness, but there is also testimony.

“Because these ashes tell is that somebody else has been in the night, somebody else has bent to build a fire, and somebody else has carried on.

“And that can be enough, sometimes.”

~Noah benShea

They want the government controlling social security like it's some kind of federal program

The scene: Sitting in a sea of paperwork, just about to wrap up a three and a half hour application to social security for Lucas

Saki: Okay, that should do it. Anything else I should say about Lucas?

The Hubbin': Did you mention that he's studly?

Saki: I don't think there's an ICD code for that, babe.

I can see clearly now, the rain is gone

Twelve months have passed since "everything" started with Lucas.

Twelve months ago, he was not walking.

Twelve months ago, he was not talking.

Twelve months ago, we had our first meeting with intervention services, who referred us to ortho, who referred us to neuro, who launched our catapult into the special needs community.

It was a community that at the time, we were devastated to join. We vacillated between denying there was anything wrong, and trembling with fear about what might be wrong.

We still don't have a diagnosis that encompasses all of the puzzle pieces. But I do know this - there is nothing "wrong" with my boy.

When we meet new people, and it comes to light that we have a child with special needs, most people respond with a sympathetic "I'm so sorry." Well, I'm here to tell you this - don't be sorry. I'm not. Lucas is a smart, loving, sweet boy. He gives 150% all the time. He throws his whole heart into everything he does. There is nothing for anyone to be "sorry" about.

It was something that I'm embarrassed to say I didn't understand until Lucas' struggles became apparent. I never understood when parents said "My special needs child is a blessing." I get it now. I completely understand and embrace it now.

Twelve months have gone by.

We still have our struggles, and we still have our sad moments, but we keep moving forward with our heads held high.

Click, Read & Be Merry

"What lies behind us, and what lies before us are tiny matters compared to what lies within us"

- Ralph Waldo Emerson

I've compiled an incomplete list of resources for parents of children with special needs and/or disabilities, limited to the United States - sorry overseas BlogFans. If you know of any other worthwhile links or resources, let me know, and I'll happily add them on.

Rehab Equipment Exchange This national network is a FREE service to facilitate the exchange and transfer of used rehabilitation equipment. Individuals can use the website to buy, sell, or donate used rehab items of many types, including wheelchairs, pediatric equipment, mobility aids, ADL (Activities of Daily Living) aids, communication devices, assistive technology, and exercise equipment.

PipSqueakers Squeaky shoes for babies with vision and mobility disabilities

Different Roads to Learning Products and programs designed to support the Autism Community

The Autism Superstore Affordable developmental toys and educational items

Seedlings Free and low-cost braille childrens books

National Association for Down Syndrome Ensuring all persons with Down Syndrome have the opportunity to achieve their potential in all aspects of community life

National Down Syndrome Society National advocate for the value, acceptance, and inclusion of people with Down Syndrome

The Arc Promotes and protects the human rights of people with intellectual and developmental disabilities

ASD Hope Help, Options & Parent Empowerment

Angel Food Ministries Non-profit, non-denominational organization dedicated to providing food relief and financial support

HealthWell Foundation Non-profit organization committed to addressing the needs of individuals with insurance who can not afford their copayments, coinsurance, and premiums for important medical treatments.

Patient Access Network Providing financial assistance to cover out-of-pocket medical expenses

Patient Advocate Foundation Providing mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses

Partnership for Prescription Assistance Helps patients without prescription drug coverage get the medications they need for free or low-cost

Co-Pay Relief Provides direct financial support to insured patients, including Medicare Part D beneficiaries

Special Olympics Provides year-round sports training and athletic competition for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship

American Council of the Blind Information and referral on all aspects of blindness, scholarship assistance, public awareness and training, advocacy

Beginnings For parents of children who are deaf or hard of hearing

Hands & Voices Supporting families and their children who are deaf or hard of hearing, as well as the professionals who serve them

Lifeprint American Sign Language resource site

Raising a Sensory Smart Child Helping your child with sensory processing issues

Sensory Processing Disorder Foundation Expanding knowledge, fostering awareness and promoting recognition of Sensory Processing Disorder

Interdisciplinary Council on Developmental and Learning Disorders Advancing the identification, prevention, and treatment of developmental and learning disorders.

NICHCY National Dissemination Center for Children with Disabilities

United Healthcare Children's Foundation Provides financial assistance toward the family's share of the cost of medical services

Social Security Benefits for Children with Disabilities

The Morgan Project Making opportunities reality granting assistance nationwide

National Autism Association Responding to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. Offers one time grant through Helping Hands to pay for tuition, medication, evaluations or testing

Disabled Children's Relief Fund Provides disabled children assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy and surgery

Queen of Hearts Foundation Helping children gain independence from disability caused by premature birth and brain trauma, such as cerebral palsy and hydrocephalus

eSpecial Needs One stop shop for adaptive equipment, rehab equipment, and therapy solutions for children and adults with special needs.

Ehlers Danlos National Foundation Overview, support and resources

Muscular Dystrophy Association Advocacy, clinics, support groups and camps for children and families dealing with a diagnosis of muscular dystrophy

Worry is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained

August 2010: And so the day went on, I paced nervously about, unable to think of anything other than what could potentially be wrong with my son. The Hubbin' and I batted the idea of driving to Georgetown around, but it was a 4 hour drive, and we would arrive long after everyone had left for the day. The Hubbin' decided enough was enough, grabbed the phone and called the hospital.

I don't know what he said, or who he said it to, since I was practically catatonic with anxiety, sitting on the couch staring at the wall, but shortly after they hung up, another doctor from the neurology team called us back.

"I'm calling on behalf of your neurologist," she said. Why do these people waste so much time with introductions? At that point, I didn't really care who I was talking to, I wanted that paper read to me. "I have your sons imaging reports here. It looks like he has a venous angioma. A Cerebellar DVA. Developmental Venous Anomaly."

"I have no idea what that is," I said. It sounded awful.

"It's actually completely benign. It just means that part of his brain looks different, but maintains normal function. There are veins in the cerebellum that drain fluid, and sometimes they form in weird ways. Usually we see them branch out like a tree, but your sons twists around and around like a corkscrew." she said, sounding satisfied with her explanation, and quite ready to end the call.

"So what does that mean for Lucas?" I asked.

"Nothing, really. It's a rather unremarkable find, since it is not accompanied by any lesions or abnormalities. I don't know why the nurse wouldn't give you this information over the phone," she said. Ha, me either, doc. Me either.

We hung up the phone, and the good news spread through the house. Happy tears flowed all around.

I was beginning to think that Lucas was part cat, with nine lives and all.

"This is my brudder, Yookuss. You need to check his brain."

July 2010: Back to the neurologist we go. Lucas still wasn't walking, and wasn't really showing too much progress, despite physical therapy. She brought her band of merry Residents with her. Residents are a funny breed. They're like doctors who don't really realize that they are doctors. Every question is met with wide, deer in headlight eyes, afraid to give the wrong answer. They answer our questions and furtively glance to their mentor to see if it was right.

The doctor ordered a set of imaging tests to rule things out. She wrote an order for a head CT and MRI, to rule out brain abnormalities and lesions on the brain; and also for a xray of Lucas' hips. Since he is so small, and the tests are all very sensitive to movement, he needed to be sedated for the testing. We scheduled the tests for the first week of August.

August 2010: We headed up to DC on the first Wednesday of August, Lucas was in the backseat, starving to death since he wasn't allowed to eat the morning of the tests. The Hubbin' made the mistake of swinging through McDonalds for coffee, which set off a tantrum that lasted up 395 and over the Key Bridge.

Once at the hospital we checked in, got our wrist bands and settled in to wait. Lucas had brought his new favorite toy, a zhu zhu pet, which trilled and chirped all over the waiting room at an ungodly early hour.

We were finally brought back to the pediatric ward, where they placed lidocaine patches on the tops of his hands, and in the creases of his elbows. After a few minutes they peeled them back, and the Hubbin' held Luc down so they could start the IV. Which, if you've ever held a child down, you know this is no small feat. Once the IV was in, they led us back to a small cubby of a room adjacent to the MRI machine room. They briefly explained the anesthetic, the risks, and the procedures. We brought Lucas into the MRI room, he was hooked up to monitoring machines and they started the sedative. He fought hard not to fall asleep. He held onto my shirt as his eyes rolled back into his head and his cries went from strong and alert to weak and whimpering.

Once he was asleep, I laid him down on the gurney, kissed his face and walked out of the room, crying. To see him go through that made him seem even smaller and more fragile.

We got a cup of (awful) coffee, compliments of Georgetown University Hospital, and waited. And waited. And waited.

They finally wheeled him out, all tests complete. They disconnected the IV sedation line, and by the time we got back to his room, he was stirring. He was disoriented, and his head flopped like a newborn. He gladly sucked back the juicebox they offered, and since he held it down okay, they gave us our discharge papers. The nurse mentioned that the images were all digital, and our doctor would be able to pull them up on her computer.

Well, you don't have to tell me twice. We hopped in that elevator, groggy baby on my hip to go stalk the neurologist. She was in her office, and did have access to the films, but wanted to wait for the reports to come back from the pediatric radiologist. She was set to go on vacation the next day, as were we, but she assured me that she would leave a note in our file for her head nurse to give us results, both good and bad over the phone. We thanked her profusely, and trudged home, weary and emotionally drained.

Monday morning we found ourselves at my parents house, enjoying some beach and pool time with the family. I called the neurology nurse and patiently* waited for her return call. The phone rang as we were all lazily floating in the pool.

"This is the neurology nurse from Georgetown returning your call," she said. I hastily greeted her - I knew who it was, I had been watching caller ID like a hawk all day. "I have Lucas' results here, but unfortunately, I can't give them to you. You need to wait for your doctor to get back to go over this with you."

"But she left a NOTE!" I protested.

"I know she did, I see it right here, but this is really something a doctor needs to discuss with you, I won't be able to answer your questions over the phone. You need to speak with your doctor."

"But...but..." I could feel my voice shaking and my emotions taking control. Any shred of rationality that I had left slithered fast and far away. "But she's already told us they might find underdeveloped parts of the brain, or missing parts of the brain, or lesions on the brain, she promised me you could tell me those things!" I countered.

"Yes, she did," the nurse agreed. "But I can't go over these results with you."

I thanked her for her time, and hung up the phone.

"I've never heard of someone not giving good news over the phone," I said to the Hubbin' and my father, who were both now pacing anxiously around the pool.

I got out, wrapped myself in a towel, and hugged my baby closer than I ever have before.

To be continued. . .

* Read: impatiently

Happiness can be found, even in the darkest of times, if one only remembers to turn on the light

I found this the other night, as I was laying in bed, idly wandering the interwebs, waiting for sleep to take over. It hit really close to home, and described my feelings perfectly. The sadness I feel because he is not running and playing like other children his age - seeing a child months younger than he is racing around the playground. But that sadness is projected - he is happy to sit and play, he's happy to plunk in the sandbox, or the shallowest part of the wading pool.

I don't know the author, but whoever it is, she's wonderful.

I sit on the park bench, eating cheesy popcorn and watching young children on the playground. I am enjoying the day, the sun on my face, and the smell of fresh grass.

Randomly I think "I wish my child could run and play with these kiddos."

And there it is, the cold hand in my cheesy popcorn; the presence taking up too much space on the park bench, blocking my sunshine. My Grief.

"Really?" I say. "I didn't invite you. Get your hand out of my cheesy corn." Instead, I end up having to scoot over, making more room for my Grief.

Grief comes and goes when I least expect it. I'll be in my car, driving along listening to music and I'll catch it in the corner of my eye, kicking the back of my seat.

"Hey."

"Aww, crap. What are you doing here?"

"It's been a while. I thought I would stop in for a visit."

"Well, make sure you fasten your seatbelt and be quiet. The baby is sleeping and I don't want you to wake him up."

"Can I change the station?"

"No."

"Can I play with the window?"

"No, you can just come along for the ride."

So we ride together; fingernails thumping on the dashboard as a reminder of who decided to show up today. Yes, I am quite aware of your presence, you don't need to remind me.

Grief's appearance used to rattle me, send me into the bathroom, crying hysterically, rendering me useless for the day. Sometimes it still does, but as Grief has been established as a consistent visitor in our household, we have drawn up a contract, we have an agreement.

As the mom of a child who does not walk or talk, I will grieve. I will grieve for many dreams that will not come to fruition. I will grieve for a life I thought would be different.

I will grieve at times, and I will not grieve at times. I will laugh at times. I will not laugh at times. Grief can come into our house, but he is not allowed to stay. If allowed to stay, it would devour the corners of our house. It would suck up the oxygen in the room. It would consume me.

And that is not acceptable.

Grief tends to run within the Special Needs community. I bump into him quite often.

"How are you?"

- My daughter has pneumonia. She is in the hospital on a ventilator.

I look around and see Grief, sitting on the couch, smugly picking at dirty fingernails.

And I meet those who sadly keep very, very close company with this unwanted guest. Grief hangs over them like a shroud. It is hard to laugh. It is hard to love. Because in copious amounts, Grief tends to ooze like a nasty, septic wound draining the life from us.

But we still have to laugh, we still have to play, we still have to live. Life carries on.

..and on..

...and on...

I cannot, at the end of my life say "Well, it was long, hard, and I was sad."

Surprisingly, our relationship is not based entirely on conflict. My interactions with Grief have allowed me to see myself entirely raw, unprotected, and exposed. At times I feel that I have lost my skin. Yes, here I am. Be careful, that's my beating heart you see there. Oh no, no, do not touch.

I am no longer afraid to approach others regarding their own tragedies. I bring up the tough conversations. How is your mother? I am sorry or your loss. I am so sorry your daughter is in the hospital. I hug, I cry, I listen. Not because I am uber-sensitive, but because I know Grief travels alone, except when he travels with with his favorites - Isolation and Loneliness.

Sometimes, Grief shows up at a party, drinks my wine, eats my last bite of fudgy dessert. It's an annoyance, really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes, we even enjoy an introspective moment or two.

We have set the rules and sometimes they are followed. We can not have a permanent, impy, uninvited, grievous house guest. We don't have the room. Not in our lives, not in my heart. Life is too short, and despite the bad things that can happen, life is too sweet.

It's not easy being a Mother. If it were easy, fathers would do it.

What is it that makes me just a little bit queasy?

There's a breeze that makes my breathing not so easy

I've had his lungs checked out with x-rays

I've smelled the hospital hallways.

Okay, blogfans, we're going to embark on a journey together. For weeks now, I've been scouring the corners of the interwebs looking for stories to reassure me that someone, anyone, has been in this situation and had a positive outcome. Google has failed me, so I've decided to write my own, for other hopefuls to stumble upon.

Don't know what I'm talking about? Let's rewind:

April 2010: I took the kids in for their check-ups. Cecilia was turning 4 and needed her school forms done, and Lucas needed one of the vaccines we decided to inoculate him with. At the time, he was 20 months, and he still didn't walk. Otherwise, he seemed to be progressing normally. The hubbin' and I had discussed our sons sedentary ways before the appointment, and we both agreed that he'll do it when he's ready. Our pediatrician agreed with us, but gently gave us the contact information for the county Early Intervention program. He said that it doesn't hurt to have a physical therapist look him over, at the very least they could help exercise the muscles he doesn't use and keep them strong so that when he is ready to walk, they'll be ready to support him. We called on the way home, and set up an appointment.

May 2010: We had our first home visit, in which someone came to our home, and asked us several pages of questions about Lucas' development. "Can he stack 4 blocks high?" "Can he self feed using a spoon? How about a fork?" Very basic stuff. Then we got to the gross motor section

"Can he stand unassisted?" Yes!

"Can he walk?" No!

"Run?" No!

"Will he drag over a chair or stool to climb on if he wants something high?" No!

"Can he kick a ball?" No!

"Can he climb stairs without placing his hands on the steps?" No!

"Can he hop?" No!

"Can he hop on one foot?" *wants to die* No!

Mmhmm...She diligently checked off "no" on her questionnaire as we went down the laundry list of questions. She then explained that in order to qualify for Early Intervention services, a child must have at least a 25% delay in any one area. Since we had an epic fail in the gross motor section, we were definitely eligible. The next step would be for a visit at their office, where we would have a three hour assessment with their team of therapists - A physical therapist, an occupational therapist and a speech therapist. The appointment was for the first week of June, about two and a half weeks after the initial home visit. The woman from Early Intervention said "He looks like he has all the right tools to do it, he just needs to put the pieces together." We nodded - she was right. It did seem that way.

June 2010: We arrived for our appointment on time (imagine that!) with Lucas and Cecilia in tow. We settled in a room that looked something like a toy room of a nursery school - brightly colored mats, toys, big mirrors stuck to the wall, happy posters hung everywhere. We were introduced to the therapists, who were all very friendly and kind. The appointment seemed a lot like play. They read books, played with blocks and puzzles, and basically just interacted with Lucas for three and a half hours. At the end of the appointment, we were handed a giant packet of paperwork that broke down the assessment into categories of skills; gross motor, fine motor, cognitive, etc etc. Lucas scored at or above his age group in all categories, except for gross motor skills where they placed him at a 12-14 month ability level. He also seemed to have low muscle tone in his core and pelvis. We agreed upon proceeding with the physical therapy. As the therapist was watching him, she asked if we had seen an orthopedic surgeon yet. "Um...no?" we said. She mentioned that she thought it was worth looking into, as Luc's ankles and feet tended to roll in when he stood and crawled. Hm. Okay. So I went home and promptly googled "top orthopedic surgeons in NoVA" and came up with Dr. John Delahay, from Georgetown University Hospital. I called our pediatrician, who concurred that he was an excellent doctor, and we were in good hands.

Saki goes psychotic: Ahh, the internets, our own worst enemy. As I was waiting for the orthopedic appointment, which was two weeks away, I made the mistake of googling. I typed in "22 month old not walking." Possibly the worst thing I could have done. I read page after page of google results. There were blogs and forums and pages of symptoms and signs on disease specific support sites. There were two reoccurring things that people kept mentioning that matched Lucas' capabilities perfectly - One was cerebral palsy, and the other Duchenne's Muscular Dystrophy. I wasn't familiar with either of them, so that led to more googling. Cerebral Palsy sounded pretty bad, until I moved onto Duchenne's. I very quickly went to "He'll walk when he's good and ready" to weeping because I felt that he had one foot (or hand and knee, as the case may be) in an early grave. I began obsessively reading about both, frantically looking for a definitive sign or symptom that he didn't have...something to ease my worried mind. But there wasn't anything. It seemed like a terribly perfect fit. At the hubbin's insistence, I called Mike's dad, a pediatrician, who talked me down off of my psychotic little ledge late one night. He was kind, and reassuring, and I took a lot of comfort from what he said.

The Ortho Appointment: Finally! We drove to Georgetown, leaving Cecilia at home with my parents, a very important breakfast date in the wings. As we sat in traffic on the memorial bridge, I looked at the Hubbin' and said "I hope this doctor isn't a doucher." He nodded in agreement. From the back seat we heard an awful retching sound, followed by what sounded like someone dumping a bucket of water on the floor. I looked back to see Lucas completely covered in vomit, soaked from head to toe. I groaned and looked in my bag for a spare outfit that I knew very well was not in there. Somehow, despite ridiculous traffic and a GPS who sent us in the wrong direction, and a car sick baby, we made it to the appointment on time (i know, right?!). We walked into the office, with Lucas, clad only in a diaper and sneakers. I felt desperate to explain what happened - I wasn't some negligent mother who brought her baby places nude, he was sick, okay? Stop looking at me like that.

We were finally called back to a room to wait for the doctor. After a short wait, the doctor came in. He was an older man, very soft spoken and thorough. He sat down, and played with Lucas, picking him up, tossing him around, rolling him across the table. He pulled on his legs, felt his back, and gave us the all clear. He said physical therapists love to send kids who don't walk to orthopedic surgeons. He noted that Luc's feet are pronated, meaning they do roll in, but they aren't pronounced for his age, and they are something that self corrects. I confessed my googling frenzy, and asked about muscular dystrophy. He said he felt that it was definitely not muscular dystrophy, but rather a neurological issue, and felt possibly a mild cerebral palsy. He suggested seeing a neurologist and gave us the name and number of someone he recommended. I left the appointment feeling as though I was dancing on air. I felt like a huge weight had been removed from my shoulders. A nurse who was standing in the hall asked "Where are your clothes, little man?" Ahh, I knew it would come eventually, but we were so blissed out with good news, I didn't care. "Oh, they're in the car. He power puked on them on the way up here." She laughed and quipped "Ah, I thought he was bringing sexy back!"

We went home and made an appointment for the following Friday with the neurologist.

Times when the day is like a play by Sartre

When it seems a bookburning's in perfect order

I gave the doctor his description

I tried to stick to the prescription

The Neurology Appointment: Back to Georgetown we went, leaving at 7:00am for our 9:30 appointment. We figured that between rush hour, and an extra few minutes in case vomit-boy had another incident we would get there on time. Except there's one thing DC is, and that's unpredictable. We left at 7, got gas in the car, stopped for coffee and made it to Georgetown by 7:35. Oops. Gross miscalculation. You can never tell with DC traffic. We sat in the waiting room until 9, watching Finding Nemo on their big TVs. We were called back to a small room where they checked weight, blood pressure, temperature, etc. Much to my chagrin, not only had Lucas had a poopsplosion in the 30 seconds that it took for us to walk into the room, but I had also left the spare diapers in the car. Apparently, I just suck at this whole outfitting a child thing. Saki = 0 for 2. They gave us a new diaper, and a spare, just to be sure, and ushered us into a consultation room. It was much scarier than the orthopedics room. A big dark wood desk with cozy chairs was in the center, and an exam table to the left of that. It seemed like the kind of room where one receives bad news. A hefty box of tissues was placed on the desk, centered between the chairs. Unsettling to say the least.

The doctor blew in the room, and immediately bombarded us with questions, pecking our answers into her computer. She examined Lucas' eyes first with the lights on, and then with the lights off. She flipped him this way and that, and then grabbed his legs and stuck his feet behind his ears. "Mmmhmm." She said. She then held his arm and bent it behind his back at an ungodly angle. "Yes, yes," she said to herself.

By this time I was about to chew my lower lip clean off my face from anxiety. I finally asked what it was that she was looking for.

"He has hypotonia - low muscle tone," she said. This wasn't big news to us, as we had heard "low muscle tone" before. But the neurologist continued that she felt it wasn't isolated to his core, as the others had said. She held his hand and bent his fingers backwards until they touched his arm. Lucas didn't even flinch. "It's him. It's all of him."

She placed him on the floor and folded him up like a pretzel, arms and legs crossed and tucked in every direction. She sat in her chair to watch him. Lucas lolled to the left and tipped to the right, and finally fell forward, untangling himself in the process. He grabbed the closest chair and hoisted himself up into a standing position, giving the neurologist the stink eye over his shoulder.

"He seems to have weak thighs," she said. "I'm ordering a Creatine Kinase test."

Instantly my heart dropped. I felt like I swallowed a whole tray of ice cubes. Cold and lumpy inside. I sunk into a chair and swatted around until I found the box of tissues. I knew from my obsessive googling that the CK test was the one which pointed towards muscular dystrophy. Seemingly oblivious to my angst, she continued "Do you have a family history of neuromuscular disorders?"

My tongue was suddenly much too big for the space provided and felt like it was made of cotton. I couldn't even answer. The Hubbin' took over from there. She handed us a slip for labwork and sent us downstairs, with an appointment to meet with her again in three weeks. "The results should be in on Tuesday," she said, circling the neurology department phone number on her card.

Silent tears poured down my face the whole time. My baby. They were testing my baby for a terminal disease.

Saki Goes Psychotic - This time for reals: Thankfully, we had a full weekend planned, away from home. My sister graduated from High School that evening (woot woot Jemma!), we drove to NJ to see her graduation and attend her party the next day. The whole weekend was a busy blur of relatives and late night swims in the pool that combined with my fathers Tramadol prescription kept me delightfully ignorant of the pending results. We returned home late Sunday evening, where I camped myself outside with a box of parliament lights the second my children were in bed.

9a.m. Monday morning I found myself obsessively calling the circled number on the card. Because she said Tuesday the results would be in, but it never takes as long as they say, right? Right?

Wrong.

"Thank you for calling Georgetown University Hospital, Department of Pediatric Neurology. Press one if you'd like to be directed to a full voicemail box where you are unable to leave a message. Press two if you'd like to sit on hold for all of eternity. Press three if you'd like us to "accidentally" disconnect this call. Press four, five, six or seven if you'd like to hear this message over and over again. If you need to speak to someone right away, hang up, and dial 9-1-1."

I finally got myself connected to the voicemail of the neurology nurse, and left a shaky message, pausing in the middle to cry a tiny bit, pleading for her to call me back.

And she did. And the results weren't in. Actually, not only were they not in, but the labwork was outsourced due to our insurance coverage. I shouldn't expect them before Wednesday afternoon.

Wednesday! That was a full 48 hours from this point in time. So I did what any rational person would do: I called my doctor and pleaded for ativan. And I got it. Thankfully.

I won't bore you with the gritty details of my expedition off the deep end, but in a nutshell, I spent three, oh yes, THREE days having panic attacks, weeping at random, and googling. It's amazing the macabre thoughts that dance through your mind. I thought about how we would have to sell our two story rambler style home to accommodate his wheelchair. But we can't sell our home, because we're upsidedown on our mortgage, so we'd have to foreclose. But we can't foreclose, because the Hubbin' will lose his clearances and by proxy, his job. And so on and so on, each level of hell getting slightly darker and darker. I wound myself so tightly that I wasn't eating or sleeping. The Hubbin' worked from home and took care of the children as I stumbled around the house in a zombie state, alternating between googling and chain smoking.

I finally fell asleep late Wednesday night, where I had a dream that the test results indicated muscular dystrophy. In my dream I screamed, sobbing, holding Lucas so, so close. It was so real I could smell his Johnson and Johnson baby shampoo. I woke up to the phone ringing, my pillow wet with tears.

It was the neurology nurse.

The labs were normal. Completely normal. I uttered a thank you and collapsed into my husbands arms, crying some of the happiest tears I've had so far.

And so it goes: We continue having physical therapy weekly. We have been working with Lucas in the pool, trying to steady his balance and work on his muscle strength. We go back to see the neurologist (who probably has all sorts of unsavory notes about my ridiculous behavior and obsessive calls typed into her computer) at the end of the month, and will probably have a CT and MRI done to continue to rule out issues.

As it stands now, he's a happy, healthy, bubbly, beautiful little boy. He's quick with a smile, and full of love. We're taking the advice of our much trusted pediatrician, and trusting in our baby and enjoying our summer. We know that this is the first steps of many. But we also know that we can't dwell on the unknowns. Feel free to remind me of that last statement whenever you feel I need a hefty helping of reality check. Now that the dust has settled, and we're finding our bear crawl groove together, there is one thing I know:

Things will be okay. Even if it's a new kind of okay.

Someday I'll have a disappearing hairline

Someday I'll wear pajamas in the daytime

Afternoons will be measured out

Measured out, measured with

Coffeespoons and T.S. Eliot