April 28, 2010

Never Doing Enough

I had intended to write about my family's amazing trip to Disneyland, which we took this week....but that will have to wait for another time. Instead, tonight I am feeling down.

I feel like I am not doing enough for A. I feel like I'm failing her.

I know, I know....anyone reading this will protest. And in reality, I know that I am doing all I can. But right now, I'm feeling like I'm coming up short.

Today we had an audiological assessment paid for by the school district. We see an audiologist twice a year at Children's Hospital, where we get both aided and unaided hearing tests. However, apparently A's IEP states that the school district will pay for her to get assessed once a year by a private audiologist. One name on the provider list was an audiologist I had heard great things about, so I jumped at the chance to get a free second opinion by someone well-recommended.

It was a great assessment. A did fantastic, and performed really well. The tests showed the same thing as all her previous tests at Children's Hospital showed...profound hearing loss in her left ear, and moderate hearing loss in her right ear. She is aided-to-normal (or just about normal) in her right ear, which is such a blessing. After the assessment, the audiologist and I sat down to talk about A and her needs.

The doctor indicated that A has the potential to fall through the cracks. She is bright, and can hear, and is now talking. Because of this, someone may look at her and think she is doing okay. The truth is, she has a major language delay (not just articulation, but expressive and receptive). This is due to many factors: she has hearing loss; she has a tracheostomy; she has a paralyzed vocal fold; she had a cleft lip, which means that where is was repaired may be stiff and not as pliable for movement; and she spent the first years of her life using a feeding tube, meaning that her tongue and oral motor skills were not developed. She has a lot of work yet to do to get her language to where it needs to be. She said that kids that don't build a solid language foundation (not just vocabulary, but concepts, etc) risk having trouble when it comes to third or fourth grade, when more is expected of their reading, cognitive, and reasoning skills, for example.

The doctor asked me what services are being provided (per her IEP). I responded that she is getting speech therapy, physical therapy, and adapted P.E. (she did not qualify for resource this past year). I AM having her reassessed for resource before her next IEP (which is next month) and also having her assessed by a vision therapist...I just wanted to make sure I was dotting my i's and crossing my t's so to speak. I would hate for A to qualify for something but not receive services because I hadn't requested an evaluation! However, the audiologist today said that maybe there were some services that I don't know about that I can look into.

Huh? There is something else? As my husband said to me tonight, you don't know what you don't know. And it scares me that maybe I don't know of service to request...something that may possibly help my daughter further.

She also asked me if A's speech therapists (and she has two: she gets 2 hours of group therapy through the school district, and half an hour of one-on-one therapy through our private insurance) give me homework to do with A at home. Umm....no. And they should, now that I think about it. I need to be doing more at home to boost A's language. And because I am not a speech and language therapist, and because no one gives me work to do at home, I don't know what to do so I do nothing. Just our usual talking....but no "work".

So I feel like I'm failing A. Partly because I'm not doing extra speech and language work at home, and partly because maybe there is more help for her out there that I don't know about. The thing is, failure is not an option. A is thriving, flourishing, and doing better than I had ever dared to dream. She is a miracle. I will not let her fail. I will advocate for her and push for her and fight for her. I just need to know what I am advocating, pushing and fighting for. I need more tools, and need to know more of what is out there for us.

April 23, 2010

Unbelievable News!

Today I took A to the neurologist. She goes every 6 months, as a follow-up to the prenatal stroke she had. Even though we see no effects from the stroke (thank God!) our neurologist still likes to see her.

Until today.

Today, after his questioning of me, and examining of A, he told me that he no longer needs to see her. In effect, we are discharged from neurology. Or, as he put it, "graduated".

I cannot tell you how happy this makes me. First, we are slowly getting rid of the long list of specialists that A has seen since being born. Last year our pulmonologist discharged her...even though she has a tracheostomy, he declared her lungs healthy enough to discharge (her trach is more airway-related, as in her trachea, vs. lung-related.) And now, no more neurology. In a few months her feeding tube will be removed, and our visits to the nutritionist will stop as well.

But more than just getting rid of the specialists, this one pleased me so much. When A was in the NICU for 12 weeks, we received a long list of her medical issues. Of everything on the list, the prenatal stroke scared me the most. More than the possibility of having a 100% deaf child, more than the possibility of having a blind child, more than the possibility of having a child who would never walk (all of these things, of course, didn't come true), I was afraid of what type of brain damage she had sustained. Mild? Profound? I had no way of knowing, and anyone who has ever has been in the NICU, or someplace similar, can tell you that the NOT KNOWING is the worst. Not knowing, when it comes to any issue, especially medical, can send you in a really dark place. At least it did for me. The day the doctors told me about her prenatal stroke was literally the worst day of my life.

So A getting discharged from seeing her neurologist? Amazing. Miraculous. Music to my ears. And to me, a great indicator for her future.

Another specialist checked off our list....more will be checked off as time goes by, some we will always see....but it's nice to see the list get smaller!

Developmental Specialist--DISCHARGED!!!
Plastic Surgery
Physical Therapy
Occupational Therapy--DISCHARGED!!!
Speech Therapy
Adapted P.E.

April 21, 2010

On the Wagon!

I wanted to give an update about my caffeine addiction. I had written a few weeks back that I am trying to detox. I am proud to say that I have been pretty successful!

First, I have not bought Diet Coke for the house in over two weeks. I had been drinking between 1-2 cans a day, and now I have none. I have had a few Diet Cokes here and there if I'm out at a restaurant, but that has been maybe 1 a week. At home I am drinking carbonated water and filtered water. Much healthier.

For a while I had stopped drinking coffee, too. In fact, I went for 3 days last week without any caffeine whatsoever, even going as far as ordering a Carmel Apple Cider at Starbucks instead of my usual White Chocolate Peppermint Mocha (or some other frilly, high calorie drink). I had survived the withdrawal headaches, and felt good. But on day four, I was feeling soooo sluggish, and really wanted a cup of coffee. I gave in.

I have decided that a cup of coffee a day is fine. Many people have this habit, and it's no big deal. But it stops there. I will not be bringing Diet Coke into the house, nor will I be drinking multiple cups a day. I feel much better about this decision...it's now a mini-addiction, instead of a major one.

Thanks for all the encouragement!

April 18, 2010

Here is why I am tired all the time

I just looked at my calendar for the upcoming week. I am already exhausted! Here is what a typical week looks like for me and my kids:

1 hour of Speech Therapy for A (through the school district)
1/2 hour of Adapted P.E. for A (through the school district)
1/2 hour of Speech Therapy for A (through our private insurance)
Take D to t-ball practice

Take A and nurse to school
Volunteer at D's school, both shelving books in the book room and working in his classroom
Pick up A
1/2 hour of Physical Therapy (through the school district)
Take D to karate

1/2 hour of Adapted P.E. for A (through the school district)
1 hour of Physical Therapy for A (through our private insurance)

no therapies! Just take A and nurse to school and then pick up!
Take D to karate

1 hour of speech therapy (through the school district)
Take A to our synagogue for their preschool's "Shabbat with the Rabbi"

D has t-ball game
A has 45 minutes of horse therapy

D has Sunday School.

This list does not include picking D up from school every day, homework, playdates, errands, making lunches, making dinners, doing laundry, playing with my kids, making phone calls for a million different things, random doctor's appointments. Some weeks we have no doctor's appointments at all. This coming week we have two (D has his 6 year-old yearly checkup, A has her six-month check-in with her neurologist). It also doesn't include me making time for myself to workout.

Thank goodness I have such a great and involved husband. J takes D to school almost every day, and also takes D to his t-ball games on Saturdays and to-and-from Sunday School most Sundays (this is so that I can take A to horse therapy on Saturdays, and do my long runs on Sunday mornings). He is also extremely helpful with the bathtime and bedtime routine. I am a lucky wife indeed.

I also have to make time to clean the house (I do have a housekeeper to deep-clean every other week, but I do daily maintainance), workout, read for my book club, and watch my favorite tv shows. I would love to find time to scrapbook, which was a hobby of mine that I still occasionally enjoy, but really don't have the time now.

I also have other responsibilities I've taken on. I'm co-room-mom for D's kindergarten class. I am on an advisory board for my synagogue's youth group. I'm in a book club that meets monthly. I might be helping A's preschool director with a big project....and I am starting an enormous project at D's school (a foundation)...but more about that another time.


April 15, 2010

A moment of panic

You never know just when and where you will have to do a trach change.

Usually we change A's trach every 9 days. It's a two-person job. Usually I do it with my husband, although more often these days I do it with A's nurse (who works for us three days a week). I COULD do it by myself, if I need to, but it really takes two people: one to hold the old trach in while the ties are cut off, and the other person to quickly take the old one out of her throat and insert the new one. Actually, a third person would be lovely to help hold down her wiggly arms!

There have been four times--in the three and a half years that A has had her trach---that her trach has come out accidentally. The first time was a few years ago. We were at physical therapy and all of a sudden I noticed that while the tie was still around her neck, the actual trach was not in her stoma (the hole in her throat). Uh-oh. After a quick moment of panic, I remembered all the training I had received while she was in the hospital after receiving her trach, and I deftly changed it. It happened two more times over the past few years, both times at home.

The fourth time was today.

I went into A's preschool class to pick her up, and there she was, with a huge smile on her face, ready to come home. I quickly noticed that her trach was not in her throat! I scooped her up, ran to the car, and laid her on the empty third row of my minivan, where I cut it off, and put a new one in, all by myself (well, to be fair, my nurse was in the second row of my minivan and she handed me the necessary supplies [trach, scissors, saline, tie, etc] but I did all the work myself).

Her teacher ran out and told me that it must have just happened. They had recently come in from playing outside, and they always put an artifical nose on her (it's a protective covering that goes over the trach) because there is sand outside and this protects sand from getting in her lungs. Apparently she has been taking this artificial nose off herself, and this time must have pulled to hard and --oops!---pulled the whole thing out. I'm just glad that school ended soon after; if a longer period of time had gone by, the stoma might have closed a bit and that would have been very, very bad.

Life is never boring in my house, that's for sure! I look forward to the day (maybe this summer, fingers and toes crossed!) when she is decannulated and the trach comes out.

April 14, 2010

Freakin' Suri Cruise

I hate seeing pictures of Suri Cruise.

I know, that's totally crazy, right?

I have always "followed" celebrity babies born around the same time as my children. For example, my son D was born in the spring of 2004. I remember that around the same time Gwyneth Paltrow gave birth to Apple, Courtney Cox had Coco, Kate Hudson had Ryder, and Debra Messing had Roman. Whenever I see pictures of these kids (which I often do, as long-time People Magazine subscriber) I think to myself, "Oh, Kid X is the same age as D! They are at the same stage in life.". Weird, I know, but I love thinking that the age-appropriate challenges I have with D are shared by these celebrities, whether it is teething, potty training, or testing limits.

When A was born in the summer of 2006, there were also lots of celebrities having babies at the same time. Gwytheth Paltrow again gave birth, this time to Moses (hey, our kids are spaced apart the same!), Gwen Stefani had Kingston, and Angelina Jolie and Brad Pitt had Shiloh.

And, of course, Tom Cruise and Katie Holmes had Suri.

For some reason, seeing Suri has always made me sad...even more so than the other babies born around the same time as A. While A was struggling to survive in the NICU, Suri was wearing designer onesies. While A was learning how to sit up at one year old, Suri was sightseeing in Italy. While A was learning to crawl at two years old, Suri was walking down the street wearing designer high heels. While A was learning how to drink at three years old, Suri was seeing plays on Broadway. And in this week's People Magazine, a week before she turns four, there is a picture of Suri choosing a nail polish color at Sephora.

I don't know why it bugs me, but it does. Suri is like the opposite of A. Whereas A has had an extended toddlerhood, due to her delays, Suri is precocious. I would never want that for either of my kids---I want them to have an actual childhood---but it always bums me out that A is so behind. Actually, a few weeks ago I walked into Sephora with A, and she enjoyed walking around, but she has no clue what nail polish even is, let alone what shade of red looks good with her skin tone.

Suri is a beautiful child, and I have nothing against her. But know you know why I don't like looking at two-page layouts celebrating her. I think that there should be a two-page layout done celebrating MY beautiful, smart, brave, and miraculous little girl.

April 12, 2010

Slipping Through My Fingers

Today, my oldest child, D, turned 6.

I cannot believe he is 6 already. Last year at this time, I was sobbing because he was 5...and the year before that I was crying because he was 4....etc....etc.

I distinctly remember being in the hospital after giving birth to him. I was there for several days, since I had had a c-section. When he was 2 days old, I cried to my husband that it was going so fast already. "He's 2 days old! Time is just slipping by!" I realized, even then when he was just days old, that his childhood would slip by before I knew it. And here it is, 6 years later, and it seems that hardly a day has gone by since I gave birth to him.

Sometimes I wish I could stop time and freeze my kids where they are now. They are so adorable....but every age has been adorable for me. Yes, each stage has it's ups and downs, but I think, at least I HOPE, that I have truly enjoyed my kids at each stage.

I try my best to capture the moment. I take pictures (most yet to be put in a scrapbook, but still...) and take videos when I can. Both my husband and I each write a letter to each child on their birthdays, chronicling their previous year, and this helps me remember what they liked to eat, watch on tv, play with, etc. But most of all I try to stay in the present moment and BE with my kids.

The last part of that paragraph is where I often find myself failing. I am not the best play-on-the-floor type of mom. Don't get me wrong; I have spent countless hours playing board games, dollhouse, babies, and blocks. But I can't do that stuff endlessly; it's mind numbing to me and although I love playing with them it has to be in short bursts. Plus, I have laundry to do, a house to de-clutter, appointments to make, dinner to cook; in short, other things that also need to be done. I try to include the kids when I can (A especially loves to help fold laundry and cook) but they can't, or don't want to, do it all.

I don't want to be an old lady and look back on my kids' childhoods and wonder where it went. And that's how I already feel, even with my oldest child only 6! I feel like it's all slipping through my fingers....I'm trying to hold a gallon of water in the palm of my hand, yet watching it quickly slip away. I am painfully aware of how quick it all goes, and want to savor it all.

April 10, 2010

Race Day!!!!!

Well, today was race day. If you are new to this blog, you can see my original post

In a word, it was AMAZING!!

Yesterday we had gone to the race expo, where we picked up the kids' shirts, bibs, and goodie bags, so they were all ready to go first thing this morning. My first runner was my son, D, who did the half mile. They were running by age groups, and I let him run with the 6 year olds (and his friends) even though he is 5....he will be 6 in 2 days and the organizers said it was okay. This was his very first race, and he was pumped. The parents were allowed to run with the kids, although the kids had to start ahead of the parents. The sounding bell went off, and the kids started running ahead. I ran for a bit, and suddenly came across D walking. He had started out with a sprint, and quickly burned himself out! I was thrilled to find him on the race course so we were able to run the rest together. For a while we even held hands running! At the end, he crossed the finish line, and received a cool medal around his neck. His final chip time was 5:33, meaning he was running an 11 minute mile. I was so proud.

After the 5-and 4-year-olds did their races, it was time for the 3 years olds to do thei 50 yard Toddler Trot. The whole family did it with A. Even A's physical therapist came...after all, she has been working with A for 2 1/2 years now, and said she HAD to be there for A's first race! Because there were so many 3 year olds, they divided them into waves of 10 kids each. When A's wave came, she was off and walking at the sound of the bell. The look on her face was priceless. She had a smile on her face a mile wide, and was obviously having a blast AND was proud of herself. Of course, the 9 other kids finished their race very quickly, and soon all was left on the course was A. There were TONS of spectators on either side of the course, and they were all cheering her on. Toward the end, the announcer on the loud speaker even said her name, both first and last. telling everyone to cheer for her. The funniest part was when she came to the finish line, she stopped short, and didn't want to cross it! The announcer said (on the loudspeaker, of course) that she was having too much fun to cross it! I took her hand and we crossed it together, where she received a medal of her own.

This race meant so much to me, and to my husband, J. To most people, it was something fun for their 3 year olds to do. For us, it was a milestone. A huge milestone. This girl didn't really start walking until 3 months ago, at the age of 42 months (3 1/2 years old). If someone had told me on New Year's Day that a few months later she would be doing this, I would have laughed at them....at that time, her record for walking was about 50 steps. I cried the whole time...tears of happiness, of course. We captured the whole 50 yards on video and with my camera, but I will never forget the feeling I had, watching her, seeing her pride, witnessing this accomplishment.

Next year D will be with the 7 year olds and have to do a full mile. A will be with the 4 year old group, and instead of 50 yards she will do a quarter mile. I have no doubt they will both be able to do it. We will start training tomorrow!

April 7, 2010

Grateful Mama Deconstructed

I've been blogging since January, and I just realized today that I should explain the title of my blog!

First of all, and those of you who know me in real life already know this, but I used to be a huge Grateful Dead fan. I'm not quite the Deadhead anymore, but I still enjoy their music. And that period of my life (no, I never followed them on tour or anything, but I did see them) was really fun. In fact, my pseudonym, Sugar Magnolia, is the title of one of my favorite Dead songs. I wish I could be like many bloggers I have found and post my real name, my kids' real names, and photos, but I am not comfortable doing so. Hence, the pseudonym.

But beyond that...I truly am grateful. I know people may look at my life and wonder why. My husband has Young Onset Parkinsons Disease. My daughter has myriad physical issues, including a trachostomy, hearing loss, a soon-to-be-removed feeding tube, and just started to walk independently at the age of 3 1/2. My son is "typically" developing, but while he is amazing, typical also comes with the usual problems kindergarten-aged boys have. I never seem to have enough money, time, energy, or patience.

And yet.

And yet I am grateful. I am grateful for a husband that loves me more than anything. I am grateful for his job, which provides for us to live a comfortable lifestyle. I am grateful for the opportunity to raise such a smart, kind, empathic son. I am grateful for the gift I was given in the form of my daughter, who has introduced me to new worlds and made me realize the true meaning of gratitude. I am grateful for a nice house to live in, food to cook, laundry to do, a minivan to drive. I am grateful for my parents, my sisters, my brothers-in-law, and the rest of the family who love MY family and support us every step of the way. I am grateful for my friends...some close friends without whom I'd never be able to do this journey, and many, many other friends who have supported me, rooted me on, and been there for me.

Without my particular family situations, I would never be grateful for food stains on clothing (that means my child is eating!), for toys strewn around the house (that means my children are engaging in appropriate play!), for phone calls and emails to return (that means I am loved!). I would never be grateful to fight insurance issues (thank goodness we HAVE good insurance!), to chauffeur my children all around town (I have dependable wheels and places to go!), to welcome my husband home each night with a freshly cooked meal (which means not only do I have food on the table, but a husband who comes HOME and is a great father to our kids).

Yes, I am grateful, in every sense of the word. Don't get me wrong...sometimes I allow myself to throw a pity party, but they don't last long. I have true gratitude for my life and those in it, and I hope that my blog reflects that.

And the Grateful Dead WERE a great band!

April 6, 2010

The Wonderful Land Oz

Last night I let D stay up late and we watched "The Wizard of Oz" for the first time (well, his first time, my millionth). I had been holding off showing him this movie, because I remember being scared of the flying monkeys and the Wizard as a child, but I figured if Star Wars doesn't scare him, this won't.

I'm glad I showed it to him...he loved it and wasn't scared at all! It was fun to watch him watching it, especially during my favorite scenes: when Dorothy opens the door to Oz and it changes from black-and-white to color; when the trees throw apples at Dorothy and Scarecrow; when the Wicked Witch melts. His eyes would widen during these, and other scenes, and it was obvious how much he was enjoying it.

I couldn't help but relate the movie to my journey with A. I often feel like I am fighting the powers-that-be (the Wizard, the Wicked Witch,) to stand up and advocate for my daughter. Insurance issues, Medi-Cal, IEPs, hounding doctors to refill her meds on time (lions and tigers and bears, oh my!) Most of all, though, what I related to in the movie was the Cowardly Lion. He sought courage, which he really had all along. He was terrified to go talk to the Wizard of Oz, was petrified to go to the Wicked Witch's castle to kill her to get the broomstick...but he did it. I love the quote:

All right, I'll go in there for Dorothy. Wicked Witch or no Wicked Witch, guards or no guards, I'll tear them apart. I may not come out alive, but I'm going in there.

Substitute my daughter's name for Dorothy, and that's the story of my life. I get nervous being an advocate...I don't like confronting people, and dealing with bureaucracy drives me nuts. But when the well-being of my children is threatened, my Mama Bear claws come out, and I will tear them apart. I have spent hours upon hours on the phone, talked to supervisors, researched with peers and online, everything I could to arm myself to fight those powers.

As the Cowardly Lion says, I hope my strength holds out. I know it will....I have become very strong since becoming a mother, and that strength increased tenfold after the birth of A. And A is the strongest person I know. Together we are invincible.

I can't wait until SHE is old enough to watch "The Wizard of Oz" too!

April 1, 2010

A glimpse into someone else's life

Do you ever have those rare moments when you get an uninvited, raw glimpse into someone's life? I had one of those moments yesterday, and it was pretty powerful.

I had a few hours to kill; A had physical therapy in the morning, and my in-laws were arriving to visit a few hours later. I didn't want to go home after therapy, be there for an hour, and then have to backtrack to the airport to pick up my family. So I took A to the mall, where we had a blast. I'd received a gift card to Tiffany for my birthday, and A had fun helping me pick out a few pairs of earrings. We had lunch, bought some clothes for her at Gap Kids (boy, my little fashionista sure has some opinions about what she wants me to buy for her!) and new lipstick for me. We capped the trip with a stop at Sweet Factory; nothing like candy for the ride home!

By the time I got back to the car, I realized I was running a bit late. My in-laws' plane arrived at 1:30, and it was already 1:05. The airport was not far away from the mall, but there was a lot of traffic exiting the mall, and I was getting anxious. I hate to be late.

At the corner of the mall, right before the turn to the main road, a man stood. The sign he held said "Injered [sic] at work...no workers comp...please help". Of course, I did nothing. These people are all over the place, holding up signs. I have become very jaded over the years, I guess. And no, the irony is not lost on me that this man was panhandling right in front of the poshiest mall in San Diego, with every designer from Michael Kors to Louis Vitton having a retail store inside.

Anyhow, the car right in front of me stopped, and the driver got out and walked over to the man. At this point, I was about to lose it; I had to get to the airport! What was this driver thinking? Get a move on! But soon I saw: he had his doggie bag of leftovers from PF Changs, a high-end Chinese restaurant in the mall, and he handed it to the man.

Color me shocked.

The driver ran back to his car, got in, and drove away. I looked at the man holding the sign (and now the bag of food)...and he was crying. Sobbing. This random act of kindness had touched this man, and his emotions were let loose. I can't imagine what he was feeling: gratitude? embarrassment? joy? shame? Most probably a combination of many emotions. It was a private moment for the two, and by being in the car behind them I unwittingly got to witness the giver's selflessness and the recipient's reaction.

As for me, I made it to the aiport right on time. But I need to examine MY reaction to these people asking for money/food/work. I know many people are out of work (heck, I have MANY friends that have been laid off during this recession, several of them still looking for work). I can't shake the feeling that much of the money people give go to drugs; maybe that's because I worked for years with drug addicts who lived on the streets, panhandling for their fix, so I know first-hand. But I hate being so jaded. And I'm glad I got to witness this random act of kindness. It was worth the stress of *almost* being late.