November 28, 2010

The Versatile Blogger Award

A few weeks ago one of my Twitter/blogging friends, Jacqi, nominated me for an award! Actually, this is my second award; a few months ago my friend Dani gave me an award too. Dani is another warrior mom who blogs about her amazing daughter and I highly suggest you check out her blog. Anyhow, I am thrilled to receive another award from Jaqui, who has an inspiring blog about running. Check it out!

This is the Versatile Blogger Award. The rules, per Jacqis blog, is that I have to share 7 things about myself, and nominate 7 deserving blogs. So here goes

1) Gone With The Wind is my favorite book of all time.
2) If I ever need to have a good laugh, I just need to put on a Christopher Guest movie. Spinal Tap and Waiting for Guffman never fail to leave me in stitches.
3) Although I work out almost every day now, and am a dedicated half-marathoner and now triathlete, I still have a hard time thinking of myself as an athlete.
4) I never knew how strong I could be until I had to deal with a child with multiple special medical needs.
5) My secret dream is to play bass and sing back-up in a band. I can't play bass, and don't have that great of a voice. But it's my fantasy.
6) I have been a vegetarian for 8 1/2 years and will never go back to meat.
7) I am a Brady Bunch fanatic, and always thought Peter (the middle brother) was the cutest. here are the 7 blogs I am nominating. Jacqi, I am not nominating yours, since you already have the award, but you seriously have a kick-ass blog!

1) Dani, who blogs at "I'm Just That Way and That's Just Me"
2) Erica, who blogs at "Erica Miss America"
3) OneFoot, who blogs at "One Foot Here, One Foot There"
4) Lisa, who blogs at "110 Pounds and Counting"
5) Debbi, who blogs at "The Henry Family Since 1997"
6) FatherPOV, who blogs at "A Father's Point of View"
7) Dana, who blogs at "The Sears Fam"

I am an avid blog reader, and keep up with tons of blogs. I especially love blogs written by parents of children with special needs, and by runners and triathletes. Reading about what other people are doing (parenting, running, training, etc) totally inspires me. I hope I can direct some of my readers to these totally deserving blogs as well!

November 26, 2010

Relaxing and Chilling

This week, save for one speech therapy appointment, we have had nothing to do. All of A's school-based services were cancelled due to the holiday, and I had cancelled her private OT and PT as they interfered with my romantic get-away with my husband. No ballet, no karate....just relaxing and chilling with the family. My kind of week.

Usually I am running around like a maniac chauffeuring my two kids from one activity to another. I wrote in the spring about my crazy schedule; this year it is even busier:

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 hour of speech therapy for A (through our private insurance)
Take A to school

1/2 hour of physical therapy for A (through the school district)
Take D to karate

1/2 hour of occupational therapy for A (through our private insurance)
1 hour of physical therapy for A (through our private insurance)
Take A to school
Take D to basketball practice

Take A to ballet
1/2 hour of occupational therapy (through the school district)
Take D to karate

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 deaf/hard-of-hearing therapy (through the school district)
Take A to school

D has a basketball game
A has 45 minutes of horse therapy

D has Sunday School

This list does not include picking D up from school every day (J takes him daily, thank goodness), picking A up from school 3 days a week, homework, random doctor's appointments, working on the educational foundation I helped to found, playdates, volunteering in D's class once a week, cooking dinner every night, making lunches, and all the various little details that every mom has to do, not to mention the stuff that a mother of a child with special needs has to do. Plus, I need to make time to work out every day, since I'm training for half marathons and triathlons, and read my books for my monthly book club.

So yes, having a week with virtually nothing to do? My idea of heaven.

November 24, 2010

Our Romantic Get-Away

Last week my husband and I celebrated our 10 year wedding anniversary. We had a lot to celebrate, as we have been through an unusually trying first decade of marriage. My father-in-law died of cancer just a few months after our wedding. And not only was our daughter born with a million medical issues, but the very year she was born my husband was diagnosed with Young-Onset Parkinson's Disease. At times our myriad stressors have brought us closer; at other times they made our marriage more challenging. I know that every marriage has issues to be dealt with (I know this also from a professional point of view, as I used to be a Marriage and Family Therapist!) and these were our issues. Mostly health-related.

Last night we got to do something we haven't done in 6 1/2 year: spend the night alone. My mother is visiting for Thanksgiving, and she offered to watch the kids overnight. This is something she's never been able to do before, as in the past A had a tracheostomy. No one in my family was trained in how to care for the trach, as they all live out-of-state so there was no reason to give them the extensive training it required to care for my daughter's airway. However, now that both her feeding tube and breathing tube are out, we are free to leave both kids with babysitters and family members. Since we haven't had a night--an ENTIRE night--to ourselves since before our son D was born 6 1/2 years ago, we jumped at the opportunity.

We got a hotel room on Coronado, an island off San Diego. J surprised me with a massage in the hotel's spa, then we went to a decadent dinner at a top-notch restaurant. After, we read letters to each other (each anniversary we write a letter to each other expressing our thoughts and feelings over the previous year). It was so romantic, so intimate. Having a night to ourselves, without waking up really early in the morning with two kids jumping into our bed was delightful. I feel like just one night away rejuvenated our marriage.

I hope to do overnights more often; perhaps once a year. It doesn't have to be as fancy as last night, but just being away alone was amazing. It's nice to reconnect as husband and wife, without the mom and dad roles being thrown in as well.

November 19, 2010

Amazing Progress in OT

I wrote back in August about taking A in for an occupational therapy (OT) evaluation at Children's Hospital. Although she had been discharged from OT the year before (she had been seen primarily for eating, and once she figured that out we were discharged) I had concerns about her writing skills. Or, rather, her lack of writing skills. She couldn't copy a circle or a line, color anything other than a scribble, and had no scissor skills. Her other fine motor skills were good; it was the writing I was concerned about. At age 4, these were skills I felt she needed. After all, next year she would theoretically be going to kindergarten (although I am holding her back a year and enrolling her in pre-K) and kindergarteners need to be able to write. To do that, they first need basic skills such as drawing lines and circles.

After having the evaluation in August, it took some time to actually get scheduled with a therapist. Our schedule is very tight, and I needed to wait until a slot opened that I could actually get to. Once school started in September, I also asked for an OT evaluation through our school district. (We also get speech therapy and physical therapy in both locations. It's nice to have good private insurance and an amazing school district. We're very lucky). Last week we had the IEP with the school OT, and services will start the week after Thanksgiving.

In the meantime, we've now had 4 sessions with the OT at Children's Hospital. I have seen such an improvement in the past month; it has been unreal. Last week in OT she connected some dots with a (decent) straight line; drew some nice circles; and completed a half drawn square. One month ago she couldn't do any of that. Seriously.

Today I when I picked A up from preschool, she had a Thanksgiving card for me. It was the usual preschool card, with her handprint made into a turkey.

However, this one had her name on it.

She had written 3 letters of her name.

Without help. Or copying. Or tracing.

The only prompt the teacher gave was "write your name".

And she did.

We haven't even PRACTICED writing letters yet. Only shapes.

Yes, I think occupational therapy is going to be WONDERFUL!

November 14, 2010

Celebrating 10 Years of Marriage

A few days ago J and I celebrated 10 years of marriage. Ten years! A decade! For the most part, it seems like much shorter. Then again, we've been through so much in our married life that in other ways it seems like much longer. J being diagnosed with Young-Onset Parkinson's Disease at the age of 35 and having a medically fragile daughter are certainly things that most couples don't have to deal with early in marriage.

I am so thankful to J, as he allows me to be me. He stands by me as I search for my passions, for my meaning of life. I am NOT the same girl he married ten years ago. I have evolved so much. While my core is the same, and I hope I am a better version of who I was a decade ago, I know I am different. And that seems to be okay with J.

Whatever I want to do he supports, as he wants me to be happy and grow:

When I decided I wanted to get back into my working out, and added half marathons and triathlons to an already busy life, he not only readily watched the kids for hours on end while I exercised, but paid for my race entry fees, running shoes, a wetsuit, and all the expensive gear that comes with sport.

When I decided I wanted to launch an educational foundation at my son's elementary school, he encouraged me and even volunteered to maintain our website.

When I need a night out, whether it's going out to clubs with my best friend or having martinis with the girls, he practically pushes me out the door.

When I got into cooking a few years ago, he supported me signing up for cooking classes and is eager to try new dishes I prepare.

When I realized that I wanted to incorporate more Jewish tradition into our household, he loved that we started to celebrate Shabbat each weekend, among other holidays.

When I want to do something new (teach a class, join a book club, learn to play guitar) he is all for it.

When I get in a bad mood, he gives me the space I need to work my way out of it.

When I have a problem that needs solving, he tries to fix it.

Don't get me marriage is perfect and rosy. We've had our ups, and we've had our downs, but we always have each other's backs and get through it. I truly think I'm the yin to his yang....we complement each other so well. I could not think of a better partner, or husband, for myself.

November 9, 2010

My Daughter (In A Nutshell)

Last week I wrote about how A took her first steps on--and off--a curb. It was very exciting, because it showed that her balance and strength are getting better and better. And, really, at the age of almost 4 1/2, it's about time!

I've also written about how motivated A is; even her therapists gush all the time about how her motivation comes from within, which you either have or you don't. All of her therapists (speech, physical, occupational, adapted P.E., and deaf/hard-of-hearing) often tell me how impressed they are with her determination, perseverance, and moxy.

So last Thursday was the day she did her first curb stepping. We did it a few times that day, and also on Friday. However, on Friday, when I was having her step off a curb when we were leaving speech therapy, she fell. She was on her knees on the pavement, crying. I picked her up, put her back on the curb, and urged her to do it again; I did NOT want her to be afraid to try going down again. However, she refused. She kept crying for me to pick her up and carry her. When I didn't, she said "crawl", and got down on her hands and knees and literally crawled off the curb.

Okay. I decided not to push it.

However, just a few moments later, A started to cry hysterically again and broke away from my hand, heading back to the curb. She started to yell, "I do it, I do it, I DO IT!!". She stepped back up on the curb, and then back down. Once she was down, she re-took my hand and we headed to the car.

That's my determined, motivated girl. She knew she could do it, and that she SHOULD do it, and she wasn't going to be satisfied until she did it all by herself.

November 7, 2010

My Sister's Selfless Gift

When A was fighting for her life for 12 weeks in the NICU, she received 3 separate blood transfusions. My sister, R, made a commitment during that time that she would donate 3 pints of blood to "pay it forward". Karma, you know?

This is amazing, because my sister is terrified of giving blood. I am too; I have never given blood, and when she told me her plan I was partly mortified and partly in awe. I don't know if I would be able to do it, even though I know that giving blood is such a life-saving thing to do. I mean, it saved my own baby's life.

Anyhow, this week she donated her third and final pint of blood in my daughter's honor. I cannot express how proud I am of my sister. Actually, I am proud of her always, as she is one of the most accomplished women I know. She works full-time in corporate America, yet still finds time to be a loving wife, an involved mother, room-mom, Girl Scout leader, and Sunday School teacher, among other endeavors. Hearing about her blood donation, it probably wouldn't surprise you to know that she is very compassionate, empathic, and a great friend. All in all, she kicks major ass.

Below is the (edited) letter she sent out to her co-workers (they were doing a blood drive at her company). Three co-workers who joined my sister in donating, all which had never given blood before and were scared themselves.

4 years ago, my niece A was born with many many many birth defects. Today, considering everything she has been through, she is absolutely thriving and she is a beautiful happy girl. She is a true light in my family's lives!

In those first weeks after she was born, she required 3 blood transfusions. In my countless prayers, I committed that I would repay those 3 pints of blood since they were so readily available when A needed them. This is a big deal for me because I am tragically afraid of giving blood. It is a real sacrifice for me to do and requires facing a lot of fears. I have "repaid" 2 of the pints so far and have one more to go.

I just noticed a sign that there will be a blood drive next Monday and Tuesday here at xxx. I am going to fulfill my commitment and was wondering if anyone would like to join me? If you don't wish to give blood, would anyone consider going with me for moral support and to hold my hand (seriously!)?

Thank you, R....and thank you to the anonymous donors who made that ultimate gift that helped to save A's life.

November 4, 2010

Curb Appeal

Today my daughter, A, did something she has never done before. She stepped up onto a curb from the street, and then was able to step down. Without help.

I know that for most 4 year olds this is not a big deal, but for A it's a huge achievement. Although she has been walking unassisted since January, she still has a hard time with things that require balance and strength. She has no semi-circular canals, which are the part of the inner ear that control balance (most people have 3 on each side, making 6 total; A has none). She also has low muscle tone and low core strength, despite the years of physical therapy, adapted P.E., and horse therapy that she has done. This affects her in different ways...she always falls backward while going a slide, she can't yet jump, and she doesn't have the strength and balance to step up high on a curb.

Until today.