* A special needs mommy once told me that the grieving process does not go at one time… she said that it comes in cycles. I would have to agree with her. This weekend was tough for me. I haven’t had a tough day, or a series of tough days, for that matter in a long time. This weekend made me second guess myself…. Perhaps I am not cut out to do this.
* A friend had a baby this weekend. A perfect baby girl. When we visited you could really see the joy in her eyes, that happy embracing feeling of finally meeting your little one. Though I do share her joy, I found myself jealous, and bitter, and angry (if it happened to me, why didn’t it happen to you?). And to realize this made me hate myself. This is not the version of me that I thought I would turn into. I started feeling pity for myself and I felt really weak, and I second guessed the “strength” in me, and it almost felt like I had ran out and that I was going to finally lose it. Or maybe I already have…. see, I’m second guessing even my current state of sanity.
* I once asked a friend how long it took him to accept that he has a child with special needs. He said that around 6 months after the diagnosis, he found himself at a better place. I thought I was doing really great, I have been proactive, I have kept up with appointments, I am keeping myself informed, I am frequently communicating with the specialists working with Isabella, and we’re always on a look out for more resources that we can tap into, more services that can be provided for her... but this weekend brought a whirlwind of sorts… I had to second guess my progress… maybe I’m wrong to assume (and rush myself) that I’d feel better soon.
* My mom also mentioned something about “karma”. (When will this “karma” talk ever stop!!!) It pains me that even the suggestion of “karma” popped into her head, because that implies that I may have done something really terrible to deserve this. Something sooo bad that all the good things I have done did not off set the really horrible things I did enough to have been granted a child with special needs. Like having a child with special needs is some sort of punishment. It is much more painful that with that mere suggestion she probably have missed the fact that what my mom was equating with “punishment” is her very own grand daughter. But somewhere there, I did second guess if perhaps I was a tremendously horrendous person and that maybe somewhere there I do deserve this.
* My husband reminded me of the conversation we had with the genetics doctors back in December, that the mutation could have happened anytime at around my 16th week of pregnancy. They couldn’t really know for sure… but I caught myself back tracking on the dates and flipping through my calendar wondering what I was doing around the 16th week of my pregnancy… and although literature supports that de novo deletions are spontaneous mutations, I second guessed myself. Perhaps I could have done something to have caused the mutation, that maybe I did this to my baby. Not that the “cause” really matters at this point… I guess somewhere there I just needed to have something to blame it on, thinking that if I do, it might be easier for me. But even with that, I’m second guessing if it would really make it less of a challenge. “Not knowing” is just soooo difficult.
* I was also planning on going on a road trip to Utah at the end of July. The plan was to go attend the WHS conference. When I browsed through pictures of WHS children of different ages, I found myself crying over the pictures that I saw. Not because it made me sad, but because the possibility of how severe my Isabella could be terrifies me. It still does. And as much as I’m trying my best to resist the urge to give in to the fear, it almost feels like that’s the only option I have left. And if I do, what happens next? Now I’m second guessing attending the conference. It feels that participating could either make me or break me. I don’t know. I don’t know. I don’t know. I’m soooo confused.
* Ever since Isabella’s G tube placement surgery, we were able to take her more outside with us, not because I was ashamed of her, don’t get me wrong, but because now it is easier to bring her because there is no dangling nose tube to carry her with. Several random strangers would approach us every time, ooooo-innng and aahhh-ing at Isabella and telling us how cute she is. I felt shame for myself, because I would look at her and I would still see the syndrome. Whenever the strangers ogle at her, all I’m thinking in my head is that at any second they are going to comment on her spaced eyes, her low set ears, her philtrum, the glabella, the prominent forehead, etc. Then I found myself second guessing that maybe somewhere there my daughter is “beautiful”…. that “beautiful”. I feel so small to even admit this and write it here. Shame on me…. Shame on me… tsk, tsk, tsk.
* Even if I have found myself telling myself that I have “accepted” my daughter… this weekend made me second guess my progress towards “acceptance”… it almost felt like there was this very thin and vague (maybe even ambiguous) line between HOPE and DENIAL. I am not sure which is which of which I am feeling at a given moment. Does accepting mean that I feel happy? Sometimes it seems useless to even attempt hoping. But then again, I wouldn’t have anything to grab onto to help me to keep on going. HOPING, though seemingly futile, is my only hope.
* I am second guessing on posting this post for fear of judgment.
Wednesday, May 19, 2010
Tuesday, May 11, 2010
Isabella Update
• As of today Isabella is 5 months and 2 days old and weighs 8 ½ lbs. My prediction is that she will be filling out her newborn clothes sooner than she filled her preemie clothes.
• She has rashes on her thighs and I’ve never been happier…. Rashes on her thighs means rolls of baby skin. =D
• 2 weeks ago, the fluid in her ears were drained and ear tubes were put in. A sedated ABR followed after that surgery and the audiologist told us that she has NORMAL hearing for both ears! (Alleluia!). When the audiologist told us this, my husband and I were in complete shock. As the audiologist went on and on blabbing all these highfaluting medical jargon (decibels, decibels, mega hertz, mega hertz) I had to stop her midway and told her “So doctor, all these medical terms aside, you’re telling us that our daughter can hear normally?”, and she replied “Yes.” I then said that that’s was all we needed to hear. When my husband and I looked at each other we were both welling up with tears of joy.
• When I asked the doctor if my daughter will eventually talk because now she can hear, she said that she does not know and cannot predict accurately because of the speech and language issues associated with WHS…. But with normal hearing, I feel that my daughter now has a better chance.
• The news about Isabella’s hearing was the first piece of good news that we’ve heard about her. It seemed that nothing else mattered after that. She can hear us! =D
• G tube surgery went well. Isabella had to stay in the hospital for 2 nights after surgery, but instead of getting a room at the hospital, she was placed in NICU. She was in the NICU not because she was critical, but because the anesthesiologist and GI doctors felt that that would be the best place for her so that she will have 24 hour nurse care… which also translates that my husband and I were able to go and have 2 nights of decent dining-out, and 2 night’s of good sleep.
• You know how some places get associated with certain memories? Well the hospital and the NICU are places that I have associated with bad news…. Those places have redeemed themselves that weekend.
• Isabella recovered well from both surgeries. We were amazed at how strong she is. She didn’t need pain meds on her second day at the hospital and she did not need pain meds at home as well. There were also no signs of infection at the site of the stoma nor was there ear infection. I should change her first name to “Super”.
• We made a good decision to switch from and NG tube to a G tube. There has been less coughing and sneezing (that causes throw ups) because the tube is tickling her nose, or when she tries to cough it out (a reflex) because something “foreign” is caught in her throat. AND because she does not have her NG tube, there have been less staring from the “curious population”, which means I have less instances to stop myself from losing control when I have bouts of the “defensive-mommy” feelings. We were also able to bring her to church on Mothers’ Day… our very first Sunday mass as a family.
• There have been less throw ups (they were absent the first week), both in frequency and in volume. We do not give her the Erythromycin anymore for her stomach motility (although we still have not received the OK for that from the GI doctors). She still gets Zantac for acidity, Cefalexin for her kidney reflux, as well as the iron and multivitamins.
• Isabella’s repertoire of sounds have changed considerably ever since the fluid was drained in both her ears. She’s been cooing more, louder, a lot more shriek-like sounds, and a plenty of back and forth when we talk to her.
• Recently, Isabella has been more active. There is a lot more air boxing and air kicking. She has discovered her hand and would put it in her mouth. She’s getting better and better at tracking and on occasions would turn her head to follow me when I walk across the room (did it while she was sitting on my husband’s lap, and has done in while lying in her crib). I also think that Isabella is at the throes of discovering her feet.
• Recent lab check regarding the creatinine level in her blood to check for kidney function have been in the normal range… yes without the help of the sodium bicarbonate. Her nephrons are working really hard…. Her kidneys may be small, but they are hardcore!
• Although she’s five months old, she manifests behaviors that would be at the 0 to 3 month developmental range, size wise she belongs in that range as well. HOWEVER, this does not mean that she is not progressing…. SHE IS PROGRESSING steadily at her own pace.
• We told the OTs, the infant specialist and the PT to stop services for two weeks. Services will resume next week. I can’t wait until Isabella surprises them with her new tricks!
• I love her smiles. She smiles at us more and more each day. Recently her smiles are accompanied by cooing sounds and sometimes some shrieking. She is the happiest baby that I’ve met. If she’s happy, what is mama so worried about, right? =D
To read about Isabella's previous developmental update, click here
• She has rashes on her thighs and I’ve never been happier…. Rashes on her thighs means rolls of baby skin. =D
• 2 weeks ago, the fluid in her ears were drained and ear tubes were put in. A sedated ABR followed after that surgery and the audiologist told us that she has NORMAL hearing for both ears! (Alleluia!). When the audiologist told us this, my husband and I were in complete shock. As the audiologist went on and on blabbing all these highfaluting medical jargon (decibels, decibels, mega hertz, mega hertz) I had to stop her midway and told her “So doctor, all these medical terms aside, you’re telling us that our daughter can hear normally?”, and she replied “Yes.” I then said that that’s was all we needed to hear. When my husband and I looked at each other we were both welling up with tears of joy.
• When I asked the doctor if my daughter will eventually talk because now she can hear, she said that she does not know and cannot predict accurately because of the speech and language issues associated with WHS…. But with normal hearing, I feel that my daughter now has a better chance.
• The news about Isabella’s hearing was the first piece of good news that we’ve heard about her. It seemed that nothing else mattered after that. She can hear us! =D
• G tube surgery went well. Isabella had to stay in the hospital for 2 nights after surgery, but instead of getting a room at the hospital, she was placed in NICU. She was in the NICU not because she was critical, but because the anesthesiologist and GI doctors felt that that would be the best place for her so that she will have 24 hour nurse care… which also translates that my husband and I were able to go and have 2 nights of decent dining-out, and 2 night’s of good sleep.
• You know how some places get associated with certain memories? Well the hospital and the NICU are places that I have associated with bad news…. Those places have redeemed themselves that weekend.
• Isabella recovered well from both surgeries. We were amazed at how strong she is. She didn’t need pain meds on her second day at the hospital and she did not need pain meds at home as well. There were also no signs of infection at the site of the stoma nor was there ear infection. I should change her first name to “Super”.
• We made a good decision to switch from and NG tube to a G tube. There has been less coughing and sneezing (that causes throw ups) because the tube is tickling her nose, or when she tries to cough it out (a reflex) because something “foreign” is caught in her throat. AND because she does not have her NG tube, there have been less staring from the “curious population”, which means I have less instances to stop myself from losing control when I have bouts of the “defensive-mommy” feelings. We were also able to bring her to church on Mothers’ Day… our very first Sunday mass as a family.
• There have been less throw ups (they were absent the first week), both in frequency and in volume. We do not give her the Erythromycin anymore for her stomach motility (although we still have not received the OK for that from the GI doctors). She still gets Zantac for acidity, Cefalexin for her kidney reflux, as well as the iron and multivitamins.
• Isabella’s repertoire of sounds have changed considerably ever since the fluid was drained in both her ears. She’s been cooing more, louder, a lot more shriek-like sounds, and a plenty of back and forth when we talk to her.
• Recently, Isabella has been more active. There is a lot more air boxing and air kicking. She has discovered her hand and would put it in her mouth. She’s getting better and better at tracking and on occasions would turn her head to follow me when I walk across the room (did it while she was sitting on my husband’s lap, and has done in while lying in her crib). I also think that Isabella is at the throes of discovering her feet.
• Recent lab check regarding the creatinine level in her blood to check for kidney function have been in the normal range… yes without the help of the sodium bicarbonate. Her nephrons are working really hard…. Her kidneys may be small, but they are hardcore!
• Although she’s five months old, she manifests behaviors that would be at the 0 to 3 month developmental range, size wise she belongs in that range as well. HOWEVER, this does not mean that she is not progressing…. SHE IS PROGRESSING steadily at her own pace.
• We told the OTs, the infant specialist and the PT to stop services for two weeks. Services will resume next week. I can’t wait until Isabella surprises them with her new tricks!
• I love her smiles. She smiles at us more and more each day. Recently her smiles are accompanied by cooing sounds and sometimes some shrieking. She is the happiest baby that I’ve met. If she’s happy, what is mama so worried about, right? =D
To read about Isabella's previous developmental update, click here
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