Out and About With Sadie

With Mommy, Daddy and Godmother
extraordinaire, Megan, at the Epilepsy 5k.

As the weather gets warmer in Chicago, I find myself out and about more with Sadie. I am always a bit apprehensive about taking her places. Primarily because I don't want her exposed to people who are sick (which is always possible when she is in a public place), and second - because I am still  learning how to answer questions about her. Now that she is looking more like a typical toddler, people tend to wonder why she isn't walking, talking, etc. - the questions we never faced when she was a baby. To add to the apprehension, now that her NG tube in in her nose, there is a visual alert of a medically complex child.

I try not to let my own apprehension deter me from taking her out. Although I do tend to have my defenses up slightly when we venture into a public place - which is new for me. It's simply not in my nature to be defensive. In fact, I joke that often times when people say mean things, I don't even realize their malintent at first. Some might call me a "Pollyanna," but I'm OK with that. I'd rather be a bit naive than assume everyone is out to get me...but I digress.

Last day in her rear-facing car seat.

Physically taking Sadie out has been a bit of a chore considering she is off the growth chart for a toddler her age. Literally, she is above the 97th percentile for length. (I suppose they'll have to adjust their scale for her :) Because she is  not yet walking, it's up to Mommy to lug her around everywhere - all 34 pounds and 36 inches. For that reason, I've been focused on keeping myself in shape so I am able to better care for her.

In addition to physically getting her out of the house, there is the additional stress of timing our outings around medicine times - or packing up medicines if needed, weighing/measuring and packing her food, and now the feeding pump, travel bag, stethoscope to check for feeding tube placement, etc.

As for our outings - I try to get her out for a walk at least once a day. She enjoys the fresh air and takes the best naps outside. Sadie also seems to enjoy shopping, and is a great shopping partner. She is quite content cruising the aisles. I think she is intrigued by the visual stimulation of shopping - lights, colors, etc. Home Goods seems to be her favorite store. This also works quite well for Mommy (much to Daddy's dismay.) The only drawback is that it's quite difficult to push a wheelchair and a shopping cart, so our purchases are limited to what can fit underneath Sadie's stroller (much to Daddy's delight.)

Because of this, grocery shopping with Sadie is nearly impossible. Although a few weeks ago, I was pleased with myself when I discovered I could push Sadie's chair at the grocery store while filling up two recyclable grocery bags over each shoulder. A drive thru grocery store in my neighborhood would be much appreciated (anyone...anyone).

Finally, there is always the chance that she could have a big seizure while we are in a public place. Her seizures are still subtle twitches that I doubt anyone would notice unless they were looking closely. However, if she does have a more intense seizure, or one that lasts longer than I am comfortable with, it means heading to the car to administer Diastat. Luckily I've only had to do this on one occasion, and fortunately I was with my sister in law at the time. The only casualty was abandoning a nearly full cart in Target.

So, despite all these deterrents, I still do take Sadie out and about quite a bit. I think she enjoys it, and I want her to have as "normal" a life as possible...and normal means getting out of the house from time to time.

An Unexpected Turn

All tuckered out from opening birthday gifts.

Raising a special needs child is often compared to a roller coaster ride. Along with the many ups and downs are unexpected twists and turns. We experienced an unexpected turn last week during Sadie's swallow study. This was Sadie's third exam to look at her swallow. Her first swallow study showed she aspirated thin liquids, and we've since been thickening her bottles using a gel called "Simply Thick."

During the swallow study, a substance called barium is added to her food. The barium lights up on the x-ray showing where the liquid is going during the swallow. (You can see a pretty cool video here.) Her therapist and doctor at the Rehabilitation Institute of Chicago ordered the swallow study to check her post-surgery swallow. We went in assuming a routine appointment - after all, she had a post-surgery bedside swallow examination in Cleveland which she passed with flying colors. She had not been getting sick and her lungs have always sounded clear (two red flags for aspirating).

However, the results showed otherwise. While drinking her bottle, even thickened, a small amount of the liquid was making it's way into her lungs during each swallow. Even at it's thickest consistency (honey thick), it was still going into her lungs.

Sadie eating her breakfast via NG tube.

Sadie was sent directly to Children's Memorial Hospital for an immediate admission and NG tube placement. (Standard protocol when a child fails a swallow study.) We were told by the pulminology team at Children's that if we had not found the aspiration, Sadie could have come down with a horrible life-threatening pneumonia. And, if she were to continue to drink, the aspiration could cause lung disease. The pulminology docs said that there are over 70 different mechanisms that must occur in the throat to ensure a safe swallow. Seems amazing that all of us aren't aspirating all the time, right?

This is what a G-Tube looks like.

So...you may ask, where does that leave Sadie? Well, there are few options for a child who aspirates. The most common being a G-Tube. Many girls with Aicardi Syndrome also have G-Tubes. In fact, one of Sadie's good Chicago Aicardi friends, Olivia, just got her G-Tube a few months ago.

In order to mentally prepare for this possible next step, we met with the surgeon this week who would perform the G-Tube operation. He provided us with pros and cons of G-Tubes. The pros being ease of medication administration, hydration, and most importantly - no aspiration. We have spoken to Sadie's team at Children's Memorial who have advised us to take our time with making this decision. They have offered to repeat a swallow study in 3-6 months to see if her swallow has improved. By that point, we can do more research and become more comfortable should the G-tube be the path she must go down.

Luckily, she is still able to eat pureed food (baby foods), so we've been feeding her her favorite keto-friendly food - mashed banana with butter. While we are disheartened and saddened by another "normal" being taken away from Sadie for the time being, we are grateful that it didn't develop into something even worse.

How Do You Measure a Year?

Sadie "dolled up" for Easter.

It's hard to believe that Sadie turns TWO this weekend. Although in some respects, it seems like she's been around longer than just two years. Heaven knows, the poor girl has endured so much in her short little life.

It has now been almost 9 weeks since Sadie's brain surgery. As the doctors predicted, Sadie is still having seizures. The seizures are milder and less frequent than before. Pre-surgery, Sadie was having 5-10 clusters/day lasting as long as 15 minutes. Post-surgery, she is at 4-6 clusters/day, with the most severe lasting 10 minutes. While this is a significant improvement, I can't help but be a bit disheartened that we didn't see a more drastic improvement. Although we went into the surgery with our expectations set, knowing that we could see NO improvement... as a parent, you can't help but HOPE for more.

Since my last blog post, sleep has improved slightly (quick prayer to sleep gods). At two years old, she still has trouble sleeping through the night, primarily due to the seizures that awaken her multiple times during the night. Mommy has now developed a habit of pulling her into bed with her if she awakens between 5-6 am. Mommy and Sadie snuggle, hold hands and dose for another hour or so. I have to admit, it's my favorite part of the day :)

Sadie using a switch during vision therapy.

Therapy is going well. Sadie's muscles are getting much stronger. Her head control and trunk control have improved immensely. We've also been working with a switch - basically a big button that teaches Sadie cause and effect. She currently uses a switch that says "eat" when we feed her. This picture shows her using a switch during a vision therapy session.

Unfortunately, until we receive that crystal ball from heaven, we'll have to continue making these difficult decisions on behalf of our daughter...not knowing the final outcome. Making each decision in the most thoughtful manner possible, all the while hoping...and hoping...that your decisions made will result in her having a better quality of life. And isn't that what EVERY parent wants for their child?

Last year's birthday blog post measured Sadie's doctor visits, therapy sessions, etc. This year, she has had the same busy schedule...but I feel like so much has changed. When we look at her, we don't see a child with disabilities. We see a child who knows her Mommy and Daddy - likes music, being outside, snuggling with her aunties...and a child who is HAPPY. And that is our biggest wish for her.

A Spring of New Beginnings (and Hats!)

It has been three weeks since Sadie returned home from her stay at Cleveland Clinic. We have been enjoying getting back into our regular routine. Sadie's scar from surgery is healing up well and her hair is growing back slowly. She received an assortment of spring sun hats from her Grandma. We joke that it is the "Spring of Hats," for Sadie. Being the trendsetter that she is, I'm sure that soon everyone will be wearing them.

The seizures have been holding steady. They are still less intense and frequent than before surgery, but she still has multiple episodes per day. She continues to be quite vocal and active...even a bit hyperactive at times. She particularly likes to kick around and talk around 3:30 am. Once she awakens, it's fruitless to try to get her back to sleep, so we typically pull her into bed with us and just endure the yelling and swatting until one of us gives in and gets up for the day. It's really quite comical...and tortuous. I now understand how sleep deprivation is used as a method of torture.

We have one more week until she is completely weaned off Phenobarbitol, so we are hopeful that the hyperactivity and sleep issues will settle out once her body has adjusted. Anecdotatally speaking, Phenobarbitol is notoriously difficult to wean and can cause all kinds of withdrawl symptoms in kids. We've spoken to many parents who have experienced similar difficulties during their child's wean.

Her doctor mentioned that we have the option of increasing her sleepy medicine (Neurontin) to try to get her to sleep a little longer. But, my mind was having a hard time making that leap...given that she just went through surgery in the hopes of weaning her OFF some of these meds. So, we decided to endure the sleep deprivation for a few more weeks until she is completely weaned off Phenobarbitol. Let's hope we can both keep our sanity until then...

Sadie's therapy schedule has been keeping us quite busy lately. Three days a week she is in the Day Rehab program at the Rehabilitation Institute of Chicago (RIC). She receives Physical Therapy, Occupational Therapy and Speech Therapy in Day Rehab. She also sees her regular therapists through Early Intervention (EI), but we have scaled back a bit with EI until she completes Day the program at RIC. Presently, we think she'll be in Day Rehab for at least two more months. The duration will be based on how well she is doing and how close she is to her pre-surgery baseline.

We've already seen HUGE improvements with her head and trunk control. When she left Cleveland Clinic, her muscles were quite floppy - a wet noodle. Now, she is managing her head quite well. She still needs to be supported while sitting, but that has also improved immensely. The therapists at RIC have ordered a Benik Vest for Sadie to help with her trunk control. Of course, Sadie's will be hot pink!

A bit of good news - we've heard back regarding Sadie's diagnostic testing for a mitochondrial disease, and so far, everything has come back negative. There are still a few tests outstanding, but this is great news.

In the meantime, we are beginning to plan for her two year birthday! It's hard to believe that Sadie will be turning two at the end of the month. Of course, we'll be on the hunt for the perfect hat for the occasion.

A Long February's Journey Into March. A Surgery Story.

In the lobby of the Cleveland Clinic is a projection of a tree that transitions through the four seasons. Spring, Summer, Fall and Winter. We arrived in Cleveland to cold weather and snow on February 20th and left to 70-degree weather on March 17th.

Sadie arrived at the Surgery Center at 5:30 am on Thursday, February 23rd. I carried her into the surgery room at approximately 7:30 am. I was able to stay with her until she fell asleep from the anesthesia. Leaving her was one of the most difficult moments of my life. Surgery lasted approximately 5 1/2 hours. We waited in the surgical lobby and received periodic updates via pager.

Except for needing a bit of a blood transfusion, the surgery itself went fine. Following the procedure, Sadie's surgeon, Dr. Bingamin, provided us with an update on the procedure. He mentioned that the structure of her brain is a little smaller than is expected of a toddler her age (microcephaly). We weren't terribly surprised, knowing that this is common for girls with Aicardi Syndrome. He explained some of the work they did during surgery, mentioning the use of electrodes on the brain tissue during surgery to see which areas were emitting seizure activity. He mentioned that her most malformed area in the frontal lobe was constantly spiking with electrical discharges.

The photo above shows what Sadie looked like post-surgery - puffy and pale. While the surgery itself went as expected, Sadie's recovery was quite difficult. As she awoke from surgery, she began having a few seizures - full body convulsions that we had not seen before, which began on the right side of her body. Apparently this is not uncommon for kiddos who have undergone brain surgery due to the trauma to the brain tissue. Still a little disheartening.

She was given a number of different emergency meds to stop the seizures. Dr. Bingamin also ordered a CT scan to check for bleeding, which came back normal. Due to the additional seizure meds, there were a few days where we were extremely concerned that Sadie would not be able to continue breathing on her own. Which means intubation and be placement on a ventilator. In fact, we had a ventilator hanging out in her room in the PICU for quite a while.

Sadie also had some trouble post-surgery with nausea. She was vomiting for a few days after surgery, so much so that docs didn't even try giving her any nutrition until 5 days post-surgery. And, even then, they just placed her on a TPN IV bag (a type of nutrition that goes directly into her bloodstream via IV). Sadie's nausea and strange right-sided movements continued for a few days post-surgery.

On Saturday, they removed her head bandaging revealing her scar, which was shaped like the upper part of a question mark looping from her right ear around the side/back of her head and around down the middle. Immediately after removing her head bandaging, Sadie was hooked up to a Video EEG to monitor her brain waves. It was Saturday that we learned Sadie was in "status epilepticus" or constant seizure. She was then placed on additional medication and the risk of breathing impairment increased.

Sadie stayed in status epilepticus for a few days until her brain slowly calmed down. She stayed on the Video EEG for a total of 12 days until the docs felt comfortable enough to take her off.

Meanwhile, she did have a bit of trouble breathing and required a few treatments by respiratory therapy, but luckily no intubation was required. She also suffered from some issues with her belly being full and distended, requiring docs to place an NG tube to pull some of the excess "juice" out of her belly. Sadie also had a feeding tube (ND or "CorePack" tube) placed which went directly into her intestine, this was used to administer medicines and to feed her formula.

After her central line was taken out of her neck, she received a PICC line in her arm. A PICC line is basically an IV that is meant for long-term administration of IV drugs, it also can be used to pull blood, so the child doesn't have to be continuously poked. Sadie was put under anesthesia and intubated for the placement of the PICC line.

Originally, GI docs wanted to conduct a gastric emptying study and a swallow study. After a little prodding by mommy and daddy, the tests were cancelled and replaced by a simple bedside swallow evaluation, which Sadie passed with flying colors. We began to feed her orally about 2 1/2 weeks after surgery. While her suck was a little weak, she quickly regained this skill and is again eating like a champ.

In addition to Sadie's brain surgery, she also had two additional diagnostic procedures performed - a spinal tap and a skin biopsy - to test for an underlying mitochondrial disease. We have some preliminary feedback from the spinal tap that no mitochondrial abnormalities were found, but we are awaiting final results, as well as the skin biopsy results.

We were hoping to transfer Sadie into an inpatient rehab facility, but after a few days of fighting with the insurance company, they denied her transfer. We will be starting a day rehab program with Sadie this week.

Overall, Sadie performed in her typical super-hero fashion. Lots of pokes, prods, tests, wires, cords, etc. but she still managed to give smiles to Mommy and Daddy. We're not quite sure where things will end up post-surgery. It will take some time to know for sure. So far, she's been very vocal, very interactive, very happy, and while the seizures still remain - they are less frequent and less severe.

After twenty-seven long days in Cleveland, we are enjoying the beautiful Chicago Spring and are happy to be home.

Preparing for the Unknown

Posting to Sadie's blog has taken a back seat lately as we prepare for her upcoming surgery. I hadn't realized all the minutiae involved with a child undergoing such a surgery. There is coordination between doctors, hospitals, insurance companies, therapists. Conversations about pre-op medications, post-op therapy. In these weeks leading up to her surgery, we've been trying to do our best to not expose Sadie to any unnecessary viruses and have generally been trying to keep her as healthy as possible. We've hit a few stumbling blocks with feeding issues and oxygen saturations. But, she seems to have bounced back OK. We've also been doing some things to take care of ourselves during this time, because we know that the road ahead will be full of uncertainty.

There are a number of things that we simply will not know until after her surgery. For example, how her feeding will be handled - if she'll be able to eat by mouth, or if she'll need a temporary (NG) feeding tube. What her post-surgery rehab schedule will be. How long she'll need to be in the hospital, etc. etc.

We DO know that the surgery will last between 3-5 hours. The doctors will be removing her right frontal and parietal lobes of her brain. Surgical recovery will be between 5-7 days, followed by an intense rehab schedule, either inpatient or outpatient, or a combination of both. Sadie will have a scar behind her hairline on the right side of her head. Stitches will be involved. There will be a trip back to Cleveland in 6 weeks, 6 months, one, two and three years to assess the success of the surgery.

The uncertainty of it all is unsettling. Particulary for two people like Adin and I who thrive on consistency, routine, and pre-planning. But the hardest uncertainty of all is not knowing how her little body will react to the surgery. Worry has engulfed us both. Thinking about anything but her surgery is extremely difficult. We certainly HOPE and PRAY the surgery will help to control her seizures - but nothing is certain. And the not knowing is the hardest part.

Please continue to keep Sadie in your prayers through the difficult weeks that lie ahead.

The Things You Never Wanted To Know

Parenting is a learning curve. All new parents understand the frustration of figuring out how to care for a new baby, whether it be the meaning of different-sounding cries, recognizing the "poopy-face," or how to assemble those darn Dr. Brown's bottles. However, parenting a child with special needs is a whole other ball of wax. There are quite a few things I've learned since becoming Sadie's mom that I never thought I'd need to know, nor ever wanted to know.

Here is a sampling:
- How to check for placement of an NG tube
- The names of the parking garage cashiers at Children's Memorial Hospital
- mg per kg calculations for Sadie's medicines
- How to put a regulator on an oxygen tank
- The definitions of fancy medical terms like hypsarrhythmia, hemispherectomy, and corpus callosum
- How to turn a hospital chair into a bed

Last week we were introduced to yet another thing that we never wanted to know. I've mentioned previously that a few of Sadie's doctors have questioned whether she has a metabolic or mitochondrial disease in addition to Aicardi Syndrome. Thus far, all the initial testing has come back negative. During our visit to Cleveland Clinic last week, we met with a doctor who specializes in this area. Despite the initial testing coming back negative, he explained that he strongly believes that an additional mitochondrial diagnosis does exist. He equated the initial blood and urine tests to fishing in a pond. Sometimes there are a bunch of fish there, but you don't catch any.

The problem with mitochondrial disease is there isn't a foolproof way to diagnose it, nor are there great treatment options. Diagnostic tests in order of least to most effective include: spinal tap, skin biopsy, and muscle biopsy (cutting a 2-3 inch incision in the thigh to extract about 1 cm of muscle). But even the muscle biopsy can miss a diagnosis 20% of the time. If they DO find that Sadie has a mitochondrial disease, treatment would include a vitamin regimen and some additional supplements to help the mitochondria function more effectively.

So...you're probably asking, what does this mean? Mitochondrial disease is scary stuff. Back to Biology 101, the mitochondria in the cell convert food into energy. When they don't work properly, kids get sicker faster, have a harder time recovering, eventually cells start dying, organs fail...you probably can fill in the rest.

So where does that leave Sadie? The doctor explained that some parents of medically-complex kids just decide to let it be an unanswered question. They just don't want to put their child through the diagnostic tests that may or may not yield results. Other parents do all the testing. Adin and I aren't yet sure what we'll do.

We went to Cleveland seeking some answers about pursuing brain surgery for Sadie, and left with a whole other set of questions. The initial feedback from the doctors is that a mitochondrial disease would not prevent them from doing surgery. There would be additional precautions the docs would take during surgery.

In deciding whether or not to do surgery, a few things the doctors said really hit home for us both. The neurosurgeon said that it is unlikely that the part of the brain they are proposing to remove (right frontal and parietal lobes) is doing anything besides causing seizures due to the extent of malformation. When discussing risks of the surgery, the the head epileptologist pointed out that yes, there are risks to the surgery, but there are also risks to having uncontrolled epilepsy for a lifetime.

So, we are going to pursue brain surgery for Sadie. It hasn't been an easy decision, but we feel like it is her best chance of gaining some seizure control. And, even if we see little or no improvement, at least we will know that we tried everything we could to give her a better quality of life.

In the meantime, we are letting the news about the additional mitochondrial disease settle in before we decide which diagnostic testing we'll pursue, if any. Yet another thing we never wanted to know...but we'll get through it. What would you do it if was your child?

My Own Dose of Perspective

So, I was feeling a little guilty after my last blog post. You see, I didn't want anyone to think I was making reference to them when I was speaking about perspective. It was more of a general statement, not referencing any one person in particular. But that's the problem with generalities, folks tend to think you are talking about them. That was truly not my intention, so if I offended anyone, I apologize. Shortly after I posted that last blog entry, I was given my own dose of perspective.

We attended a holiday party put on by a great organization called Hope's Friends. (The photo above is from that party, with Sadie looking inquisitively at Santa.) The organization, under the Hospice umbrella, provides palliative care to children with life-limiting conditions. Attending the party were children with a variety of different diagnoses and conditions. It was a great reminder that even we need a little perspective from time to time.

Sadie has had a few busy weeks as we wrap up 2011. In addition to the holiday party mentioned above, we've spent time with our dear family and have gotten together with a few close friends for the holidays - all of whom showered Sadie with love and affection. She had her monthly visit to Lekotek (the special needs toy-lending program) where we picked out some great toys for her to play with over the holidays. We also heard back from our local park district, who agreed to install a special needs swing for Sadie at our neighborhood park. We're looking forward to warmer weather so she can enjoy her first time playing on a playground!

As we wrap up another year, I am reminded of all the wonderful people and organizations who have helped our family. From the friends and family who sat bedside with us during Sadie's five hospital stays this year to the volunteers who helped with caring for our lawn while Sadie was in the hospital. We are eternally grateful for everyone's support.

Here's to a happy and HEALTHY 2012.

My Problems > Yours

Recently, while speaking with a group of fellow special needs moms, the topic turned to our shared exasperation at some people's lack of perspective. These moms have kids with some of the most complex medical conditions - feeding tubes, daily seizures, non-verbal, non-mobile, oxygen requirements, etc.

One mom recanted a tale of a text message she received while she and her husband were writing up their daughter's DNR (Do Not Resuscitate) orders. The message of complaint from another mom detailed how her power had just gone out and she and the kids were forced out of the house to wait it out at the local Rainforest Cafe. My fellow special needs mommy wrote back, something to the effect of..."I'm sorry your day has been so hard. We're writing up our daughter's DNR Orders. Talk more later."

We all know these martyrs. The people who respond with a long sigh when you ask how their day is going. Always reminding you of their hardships, trials and tribulations. Even those who have legitimate things to complain about, they're just no fun to be around. I vowed never to be one of them.

Now, I realize that what may sound relatively trivial to me, is in fact, a big deal in these martyrs' lives. But, by about the sixth time I'm hearing about how they're just so worried that little Johnny is still using a pacifier, my head is about to explode. I want so badly to bring them back to reality and remind them that while they are googling the long-term dangers of pacifier reliance, we are debating whether or not we are going to have someone cut into our daughter's skull.

A good friend of mine suggested that this is exactly how I should respond. "Give them a little perspective," she said. No, instead I typically excuse myself from the conversation before I say something I'll regret.

Besides the lack of sleep, our little Sadie has been doing OK for the past few weeks. We are still dealing with seizures every day - but no diastat seizures for about 3 months now (quick prayer to seizure gods). She's still doing well OFF oxygen as well. Our recent challenge has been with feeding. As I mentioned in a previous blog post, we've been to see a second feeding therapist at Children's Memorial Hospital. She's provided us with a few additional tools to use with Sadie during her feeding times - such as a chewy tube (which promotes a natural chewing pattern), a maroon spoon, and a NUK brush.

These tools have provided for a bit more cooperation during feeding, but she'll still have quite a few mealtimes where she simply does not want to open her mouth and/or swallow her food. We've also been slowly introducing Sadie to a sippy cup during her feeding times, but some days she just has an aversion to any type of feeding. Luckily, we've still been able to keep her hydrated and get her daily calories in by using her bottle. We're just keeping at it.

In January, we will visit the docs at Cleveland Clinic again to talk about a possible surgery for Sadie. We were given the option to have surgery performed on this same trip, but decided that we'd need some time to process the conversations to make an informed decision. In the meantime, we're looking forward to spending a lovely Holiday Season with friends and family. And, when I encounter one of these martyrs, I'll just need to remind myself that it's not what happens to you, but how you react to it that matters.

P.S. The photo above is of Sadie meeting Santa for the first time - you can see she's overjoyed!

Giving Thanks

I recently read this post by a fellow parent, and felt inclined to share during this season of Thanksgiving (complete with a little tongue-in-cheek humor).

Ten Reasons to Give Thanks for Your Child With Special Needs (by Terri Mauro)

As if you need a reason! Parents of children with special needs know more than most that every child is a gift worthy of thanks. EVERY ONE, the ones who thrive and the ones who strive, whether they become our legacy or we become theirs. But on those days when there doesn't seem much to be thankful for, or others are suggesting that your child must be just a burden, or well-meaning charities suggest giving thanks for healthy kids, check this list for a smile and a little inspiration.

1. You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.
2. Developmental delays = more years of hugs, kisses, and little-kid sweetness.
My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?
3. Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.
4. Any little milestone is a cause to throw a party.
Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.
5. Every day is a learning experience.
Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.
6. You have the privilege of putting several doctors' children through college.
After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.
7. You meet a better class of parent in waiting rooms and support groups.
Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.
8. You have an iron-clad escape excuse for any occasion.
You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)
9. Coming up with new strategies every day keeps your brain sharp.
They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.
10. Your blessings will always be fully counted.
Other parents may take the gifts that their children bring for granted. Not you. Not ever.