It is no secret that I wasn't thrilled about having a boy. Not that I was against boys...it's just that I didn't know anything about them! I have two sisters, and no brothers, and therefore did not grow up with boy. I was a bit apprehensive. When I found out in the ultrasound that I was having a boy, I cried. As my due date approached, however, I got very excited. I fell in love immediately with D, literally one second after I saw him. He was perfect: healthy, beautiful, and mine. All my fears about boys melted away when I held him for the first time.
Therefore, D has taught me about the magic world of boys.
D is very much like me in so many ways. We are both bookworms, love music, like to find out about people, even look alike in several features. But personality-wise, he is even more like me. He loves to sleep, and like me when I was a child, practically needs a bulldozer to get him out of bed in the morning. He is stubborn, and we constantly clash and butt heads. We both like to own collections of things, whether it's every Star Wars item he sees or every book in a series I love. And he has a long memory, which is definitely inherited from my side of the family.
Therefore, D has taught me that I need to look within myself to get the best out of him.
D has a curiosity and thirst for knowledge. He wants to try everything. I remember when he was in preschool, and they offered optional enrichment classes after school. He did a session of soccer, and a session of karate. For the third session, he wanted to do ballet. Not because he wanted to actually LEARN ballet, mind you, but because it was something he hadn't tried yet (he ended up doing soccer again when he learned he'd be the only boy in the class). He really gets into his books, and reads them in the car because he can't put it down. He constantly asks questions that I can't answer and need to look up.
Therefore, D has reminded me about how fun it is to learn for the sheer joy of it.
Pre-children, I never went to temple, and hardly did anything religious. Now, we have Shabbat dinner every single Friday night, with challah that I bake myself, and we try to celebrate all the other Jewish holidays (at least the major ones) as well. We're even working on maybe getting to temple a bit more often.
Therefore, D has brought me back to my religious roots.
Before D was born, I had a fancy-free life. Since I was working, and therefore we were a two-income family, we had a lot more money and therefore traveled a lot more, ate out often, and did fun things such as buying season tickets to see Broadway musicals. After D was born, I stayed home with him, and money got tighter. Travel is rare, I cook most nights. and getting a pedicure is a luxury I used to take for granted. In return, I get family time, home-cooked meals, kisses and cuddles from my son, pictures drawn and stories made up just for me, and the satisfaction of knowing that above anyone else, I have the most impact on molding this young boy into the wonderful man I hope he becomes.
Therefore, D has taught me selflessness, boundless joy, and unconditional love.
I love my son, with all my heart, and am so proud and honored to be his mama.
May 8, 2010
May 5, 2010
Trach News
On Monday I took A to her ENT (ear, nose and throat specialist). He is the one who is charge of the decision whether or not--and when--to take out her tracheostomy. Each summer, for the past two years, A has gone into the operating room where they have put her under anesthesia and our ENT has "scoped" her, meaning that he looks down her throat to see if she is ready to take the trach out (otherwise known as decannulation). And each time, he comes to the consultation room after the scope and tells J and I that she is not yet ready. I get my hopes up every year, thinking THIS is the summer she will be decannulated, only to have them dashed.
Anyhow, in talking to him on Monday, I get the sinking feeling---AGAIN--that this year is not to be the year. A has some complications in her airway, including a paralyzed vocal chord and a swollen part of her larynx. Of course, he doesn't know anything right now; he needs to scope her to actually see what her airway looks like. And for the first time, he said that after the scope we might have options that we can discuss together. I'm not sure what those options are, but just hearing that there are options to discuss is new to us.
I realize how great A is doing, and feel enormously grateful. She has come so far in the almost four years she's been here...and accomplished more than I ever really thought she could. Also, I had a checklist of four goals I wanted for A this year. She is so far accomplishing 3 out of 4:
1) Walk. DONE! She has been walking full time since January, and even completed her first race!
2) Talk. DONE! She has a long way to go in terms of expressive language, receptive language, and articulation, but she talks all the time now, often in 4-5 word sentences, and is using language nuances such as gerunds and prepositions.
3) Eat and drink, enough so to get her g-tube removed. DONE! She has not used her g-tube (feeding tube) since last July, which is 9 months ago. We have already returned all the feeding tube supplies back to Children's Hospital Home Health. She is getting her g-tube removed this summer while sheis under anesthesia from the ENT scope. It will be gone.
4) Get her trach out.
Ah. That. The one thing we have literally no control over. No amount of therapies can help her airway get bigger, or unparalyze her vocal chord. There is nothing we can do for her except wait and see.
Even if she doesn't get the trach out, she will have met 3 out of 4 of my goals for her this year...75%! Even meeting one of those goals would have been miraculous, but three?
And yet....and yet I really want the trach out. Don't get me wrong...it saved my daughter's life, and I have no doubt that she would be dead, or at the very least doing extremely poorly, had we not consented to it. But I'm tired of it. I am sick of lugging her suction machine around everywhere we go. I desperately want A to be able to go in a swimming pool, or the ocean, or even a half-filled bathtub. I would love to be able to leave her with someone other than my husband, our respite nurse, or my best friend, the only 3 people besides me who are trained to care for her trach. It would be heavenly to be able to drop her off at a friend's house for a playdate, or drop her off at school without me or the nurse having to remain on the premises at all times. I would love to be able to have more date nights out with my husband, in which I could hire a babysitter, rather than have to ask either our nurse or my best friend.
I have to make peace with the fact that the trach may be in another year. Or more. I would love it to be out by the time she starts kindergarten, which is 3 years from now, but in reality, I want it out this summer. And it just might come out. But just as easily it might not.
We will wait and see........again.
Anyhow, in talking to him on Monday, I get the sinking feeling---AGAIN--that this year is not to be the year. A has some complications in her airway, including a paralyzed vocal chord and a swollen part of her larynx. Of course, he doesn't know anything right now; he needs to scope her to actually see what her airway looks like. And for the first time, he said that after the scope we might have options that we can discuss together. I'm not sure what those options are, but just hearing that there are options to discuss is new to us.
I realize how great A is doing, and feel enormously grateful. She has come so far in the almost four years she's been here...and accomplished more than I ever really thought she could. Also, I had a checklist of four goals I wanted for A this year. She is so far accomplishing 3 out of 4:
1) Walk. DONE! She has been walking full time since January, and even completed her first race!
2) Talk. DONE! She has a long way to go in terms of expressive language, receptive language, and articulation, but she talks all the time now, often in 4-5 word sentences, and is using language nuances such as gerunds and prepositions.
3) Eat and drink, enough so to get her g-tube removed. DONE! She has not used her g-tube (feeding tube) since last July, which is 9 months ago. We have already returned all the feeding tube supplies back to Children's Hospital Home Health. She is getting her g-tube removed this summer while sheis under anesthesia from the ENT scope. It will be gone.
4) Get her trach out.
Ah. That. The one thing we have literally no control over. No amount of therapies can help her airway get bigger, or unparalyze her vocal chord. There is nothing we can do for her except wait and see.
Even if she doesn't get the trach out, she will have met 3 out of 4 of my goals for her this year...75%! Even meeting one of those goals would have been miraculous, but three?
And yet....and yet I really want the trach out. Don't get me wrong...it saved my daughter's life, and I have no doubt that she would be dead, or at the very least doing extremely poorly, had we not consented to it. But I'm tired of it. I am sick of lugging her suction machine around everywhere we go. I desperately want A to be able to go in a swimming pool, or the ocean, or even a half-filled bathtub. I would love to be able to leave her with someone other than my husband, our respite nurse, or my best friend, the only 3 people besides me who are trained to care for her trach. It would be heavenly to be able to drop her off at a friend's house for a playdate, or drop her off at school without me or the nurse having to remain on the premises at all times. I would love to be able to have more date nights out with my husband, in which I could hire a babysitter, rather than have to ask either our nurse or my best friend.
I have to make peace with the fact that the trach may be in another year. Or more. I would love it to be out by the time she starts kindergarten, which is 3 years from now, but in reality, I want it out this summer. And it just might come out. But just as easily it might not.
We will wait and see........again.
May 2, 2010
The Happiest Place on Earth
Last week my family took a trip to Disneyland. This was more than just a Disneyland trip to us....it was the first vacation that we took, as a family of four, that did not include visiting our families. Both sides of our families live in different states, so whenever we take a trip it's to visit grandparents, aunt, uncles and cousins. Which is great. However, it was so nice to have a vacation all to ourselves. We only live 90 minutes from Anaheim, so it was very close. We had two days and one night there. It was A's first time in a hotel, and while it was D's third time, the last time he was in a hotel was when he was two, so this was his first hotel that he remembers.
We had so much fun! The first thing I did was buy an autograph book, which got used quite a bit. We met so many Characters, including Mickey Mouse, Alice, Tigger, Chip and Dale, and Goofy, among many others. Each time we met a Character we not only got their autograph, but we also posed for a picture with them. Of course, A tended to be frightened of the Characters, and wouldn't hug them. She would either bury her head in my chest, or just cry. We even met three Princesses (Ariel, Belle and Tiana) and she was NOT pleased about it. Poor baby was scared. When we returned from our trip, D taped each picture next to the appropriate signature. What a fun keepsake!
Many rides we did together as a family, but at different points we split up. D is now old enough to do the "big rides" at both Disneyland and California Adventure, such as Space Mountain, Splash Mountain, and the Tower of Terror. So one parent would take D on the thrill rides (usually me, as I love thrill rides too...they are never fast enough or scary enough!) and the other parent took A on more toddler-friendly rides. We did eat all meals together, including a fun Character breakfast where we paid for the experience of having several Characters come to our table, and took in two parades.
D has recently gotten into the music of Michael Jackson, so it was special for me to take him to see Captain EO, which they have brought back since his death. I hadn't seen the show myself in about 20 years....and it really held up!
One really neat part of the trip was going to see the Jedi Training Academy. This was a show at Tomorrowland, and many kids got called on to go on stage. D is a Star Wars freak, and was beyond thrilled when he was one of the kids chosen to participate in the show! He got to wear the brown Jedi cloak, learn how to operate a lightsaber, and eventually fought Darth Vader all by himself. It was certainly a high point, and an experience I'm sure he will remember for a long time to come.
We got to use a special guest pass for A, meaning that we got to bring her stroller in line with us (which is usually prohibited), and for rides whose lines couldn't accomodate a stroller we got to jump ahead a bit (ie wait to enter at the ride's exit, which usually bypassed some people). Because we carried A's tracheostomy equipment in the stroller, in particular her suction pump, we didn't feel comfortable leaving it out with the other strollers. For one reason, what if someone stole the stroller with her medical equipment in it? And for another reason, what if she needed to be suctioned while in line? Luckily, Disneyland is very accommodating with guests with special needs of all sorts.
Being in the hotel itself was nice. We stayed at the Paradise Pier, which is on the Disney property. A is still in a crib at home (we ARE getting her a bed for her birthday though) and instead of bringing the pack-n-play, we let her sleep in bed with me, while D slept with J. At first, when we went to sleep, she was sobbing "I want go home" but eventually she fell asleep. She is just not used to being in a bed, and although she has been at relatives' homes before and been fine, this was clearly a different sort of place for her.
Being away with my family meant so much, and while I am looking forward to our next visits with family, I am very much looking forward to doing more short get-aways with just my husband and kids. It was great to bond, have fun, get away, and most of all, create fabulous memories together.
We had so much fun! The first thing I did was buy an autograph book, which got used quite a bit. We met so many Characters, including Mickey Mouse, Alice, Tigger, Chip and Dale, and Goofy, among many others. Each time we met a Character we not only got their autograph, but we also posed for a picture with them. Of course, A tended to be frightened of the Characters, and wouldn't hug them. She would either bury her head in my chest, or just cry. We even met three Princesses (Ariel, Belle and Tiana) and she was NOT pleased about it. Poor baby was scared. When we returned from our trip, D taped each picture next to the appropriate signature. What a fun keepsake!
Many rides we did together as a family, but at different points we split up. D is now old enough to do the "big rides" at both Disneyland and California Adventure, such as Space Mountain, Splash Mountain, and the Tower of Terror. So one parent would take D on the thrill rides (usually me, as I love thrill rides too...they are never fast enough or scary enough!) and the other parent took A on more toddler-friendly rides. We did eat all meals together, including a fun Character breakfast where we paid for the experience of having several Characters come to our table, and took in two parades.
D has recently gotten into the music of Michael Jackson, so it was special for me to take him to see Captain EO, which they have brought back since his death. I hadn't seen the show myself in about 20 years....and it really held up!
One really neat part of the trip was going to see the Jedi Training Academy. This was a show at Tomorrowland, and many kids got called on to go on stage. D is a Star Wars freak, and was beyond thrilled when he was one of the kids chosen to participate in the show! He got to wear the brown Jedi cloak, learn how to operate a lightsaber, and eventually fought Darth Vader all by himself. It was certainly a high point, and an experience I'm sure he will remember for a long time to come.
We got to use a special guest pass for A, meaning that we got to bring her stroller in line with us (which is usually prohibited), and for rides whose lines couldn't accomodate a stroller we got to jump ahead a bit (ie wait to enter at the ride's exit, which usually bypassed some people). Because we carried A's tracheostomy equipment in the stroller, in particular her suction pump, we didn't feel comfortable leaving it out with the other strollers. For one reason, what if someone stole the stroller with her medical equipment in it? And for another reason, what if she needed to be suctioned while in line? Luckily, Disneyland is very accommodating with guests with special needs of all sorts.
Being in the hotel itself was nice. We stayed at the Paradise Pier, which is on the Disney property. A is still in a crib at home (we ARE getting her a bed for her birthday though) and instead of bringing the pack-n-play, we let her sleep in bed with me, while D slept with J. At first, when we went to sleep, she was sobbing "I want go home" but eventually she fell asleep. She is just not used to being in a bed, and although she has been at relatives' homes before and been fine, this was clearly a different sort of place for her.
Being away with my family meant so much, and while I am looking forward to our next visits with family, I am very much looking forward to doing more short get-aways with just my husband and kids. It was great to bond, have fun, get away, and most of all, create fabulous memories together.
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