WOW- it has been a LONG time since I have updated my blog. I am an avid blog reader, and I love to write- but so much has happened since I began blogging that I let life overwhelm me and swallow up everything I used to love doing. Since my last post, we have had ups and downs, good times and bad times, and life-changing times as well. Please excuse me if I ramble, sound pathetic or whatever. It’s just how I roll. Since my last post, Zoe’s daddy and I have split up. We are working on our relationship. but putting our daughter first right now.
Anyway, on July 4th- a matter of 2 weeks after we decided to split, we both packed up all of our stuff- He moved home to his mom’s, and Zoe and I moved home with my mom- leaving behind our old apartment, and (A! Brand! New!) thousands of dollars in debts that now need to be paid off. Sounds sweet, huh? Moving back home and getting your life straightened out- paying off old bills and getting back on your feet… uh, no. it’s not quite that simple. You see, my (decent paying, albeit mind numbingly boring) job is in Baltimore- and my mom, she lives in bumfucked Pennsylvania. Nearly 2 hours ONE WAY- TWICE A DAY. I swear I spend enough in gas and car repairs to have my own place, but I am trying to be patient. Well, I fear that I may bore you to death with my misery and woes, so let me get back to the point of the blog.
What’s that? Zoe? OH!!! Zoe is just fine. Over the last 3 months or so since I last wrote, she has really begun to blossom! She has become very accustomed to wearing her hearing aids, and rarely takes them off- except in the car. We still haven’t figured out exactly why, but that’s where we are. I have to tell you- watching her learn and grow every day is just amazing. She is now doing quite well with naming the parts of the face- and I have never been so happy to have someone shove a chubby, sticky little finger into my eye socket and proudly proclaim “EYE”! She’s just amazing- she even knows how to do “itsy bitsy spider” now. Except when you get to the “out comes the sun” part… for some reason she hates that part; refuses to do it, and will bite you if you try to make her.
She has a small, but recognizable (to us) vocabulary- which is exciting. She says: Eye, nose, mouth, hand, Ow (ouch), “It Hurts” (always the drama queen), shoes, mama, she barks like a dog, sometimes meows like a cat, and she has a much wider range of signs that she uses on a daily basis. Granted, some people’s kids have full conversations at this age, but I am trying not to let it discourage me. I work with her as much as possible- I name everything as we walk, sound out words and teach her signs. She is still working with her developmental specialist to learn new signs and everything, but she has gotten most of her progress from right at home.
One of the newer things we have been dealing with lately has been her behavior. For the last couple months, we have run face first into the terrible two’s like a brick f’ing wall. It’s funny to look back now and laugh at your (formerly childless) self, isn’t it? Remember when you would see a child in a store, running from their parents, throwing themselves on the floor, screaming for some random toy or whatever? You’d watch in horror and confidently tell yourself “that will never be MY kid”. HA!!!! Karma’s a bitch, my friend. My daughter is now in what I lovingly refer to as the “fish phase”. That is, whenever she doesn’t get her way, she drops to the floor like a ton of bricks, then proceeds to flail her arms and legs wildly like a fish out of water.
Most of the time, it’s the smallest things that set her off into full blown tantrum mode in public. She absolutely WILL NOT hold my hand. EVER. You know, because I might embarrass her in front of the kid who is knuckle deep in his nose, or the little girl with the snot crusted to her face… I don’t know. So she will immediately go limp, dangling by one arm in one violent jerk. So I do what anyone would do- I pick her up. BIG MISTAKE. HUGE. She will thrash about and scream and swing her noggin around until you get into the store, sometimes longer. I know this will eventually (please God) pass… but it’s what we’re dealing with right now, and it aint pretty.
Thanks for reading this- I promise (to myself?) to start updating more regularly!!!!!!!
Wednesday, July 29, 2009
Thursday, April 9, 2009
New Ears!
Zoe has had her hearing aids for over a week now, and I have to say it has been... challenging. The constant feedback drives me up a wall so much that I take them out more than I want to just to get a break from it. It sucks that my baby has to hear this noise whenever she lays her head down, leans in for a big hug, etc. So Friday Dr. Robinson will give us a new pair- apparently a stronger, better pair- YAY!!!! I hope they are better than the ones we have now. I mean, I know they are just temporary loaners, but geez!
I am really starting to get used to the idea of her having to wear hearing aids, though dealing with the obstacle of her being a very active toddler sometimes wears on me. She still takes them out, and I am not really sure why. I wonder if they bother her- maybe she hears feedback, or they don't fit properly; but I really think it has a lot to do with the whole power struggle aspect of it. She knows what pushes mommy and daddy's buttons- and she pushes them as often as she pleases! She knows when she is being bad- obvious by her running away when we stand up to come get her when she is pulling all the DVD's out on the floor, pushing buttons on the printer, trying to stand on dining room chairs, and now... pulling out her hearing aids. She even gives us a sneaky little giggle when she does it! It's hard to be mad, though- because she's just so darn cute!!!
Things at home are a little tense lately- what with worrying about Zoe, finances, all this responsibilty sometimes weighs heavy on the shoulders. I try to keep a handle on my worrying and stressing, but I am just not that strong. I have to let it out, and poor Jonathan is usually the unfortunate recipient. I hope he knows I love him, and that even though we are going through a lot in our relationship right now- we have to stay strong together as one. We WILL get through this, and a bright future is ahead for all 3 of us!
So I am a little bit excited to see how the new aids work- my mom will be going with Jonathan and Zoe to the appointment at 11:30am tomorrow. She will enjoy going- my mom feels really left out of Zoe's life with her living so far away from us. Jonathan's family is so much more involved in her life, and I know that probably hurts sometimes.
Easter is upon us, now too- we have to take Zoe to see the Easter bunny!!! I think we will be doing that Friday Evening, so I will try to post a picture sometime soon.
You can kind of see her first pair of aids in the pic on the right- they were a neutral color, so they sort of blended into her skintone- unlike the new ones which are bright neon pink... LOL :)
I am really starting to get used to the idea of her having to wear hearing aids, though dealing with the obstacle of her being a very active toddler sometimes wears on me. She still takes them out, and I am not really sure why. I wonder if they bother her- maybe she hears feedback, or they don't fit properly; but I really think it has a lot to do with the whole power struggle aspect of it. She knows what pushes mommy and daddy's buttons- and she pushes them as often as she pleases! She knows when she is being bad- obvious by her running away when we stand up to come get her when she is pulling all the DVD's out on the floor, pushing buttons on the printer, trying to stand on dining room chairs, and now... pulling out her hearing aids. She even gives us a sneaky little giggle when she does it! It's hard to be mad, though- because she's just so darn cute!!!
Things at home are a little tense lately- what with worrying about Zoe, finances, all this responsibilty sometimes weighs heavy on the shoulders. I try to keep a handle on my worrying and stressing, but I am just not that strong. I have to let it out, and poor Jonathan is usually the unfortunate recipient. I hope he knows I love him, and that even though we are going through a lot in our relationship right now- we have to stay strong together as one. We WILL get through this, and a bright future is ahead for all 3 of us!
So I am a little bit excited to see how the new aids work- my mom will be going with Jonathan and Zoe to the appointment at 11:30am tomorrow. She will enjoy going- my mom feels really left out of Zoe's life with her living so far away from us. Jonathan's family is so much more involved in her life, and I know that probably hurts sometimes.
Easter is upon us, now too- we have to take Zoe to see the Easter bunny!!! I think we will be doing that Friday Evening, so I will try to post a picture sometime soon.
You can kind of see her first pair of aids in the pic on the right- they were a neutral color, so they sort of blended into her skintone- unlike the new ones which are bright neon pink... LOL :)
Oh, and we are without Easter Bunny pics because apparently Zoe thinks the bunny is the son of Satan. She nearly climbed over my back trying to escape him- good thing we didn't wait in a long line! Maybe next year...
Wednesday, April 1, 2009
The Journey Really Begins Here...
Well, the long-awaited night finally came last night- Zoe got her hearing aids. When I first saw them, I thought they were not too bad- smaller than I thought they would be, which is good. I think she is hearing things a little better now... I think. Dr. Robin said she did well when she tested her reaction and localization of sounds in the soundproof booth. She did turn toward them several times- but then she started anticipating which side the noise was going to come from, and it was a little more difficult to tell if she actually heard it, or was guessing which side it would come from. She didn't seem to be bothered by the aids, she seemed to like them and showed off in the doctors office, running around and making noises. It worried me a little that Dr. Robin had to program them at level 3, a stronger amplification- because I wonder if they are actually going to help her, or if she may need the implant surgery. I don't know how well I will be able to handle that, my baby having to get surgery. It was enough seeing her get sedated and not have an invasive procedure for the ABR.
It is still going to take some time before she may "learn to listen"-know when someone is talking to her, where the sound is coming from, and what the words mean. I am happy that she finally has the help she needs, though. She seemed so happy to have them in for the most part. I can see, though- that these are going to be part of the daily power struggle that any parent deals with when they have a very active toddler. She pulled them out about 6 or 7 times last night- not because I think she doesn't like them or doesn't want to wear them, but because she wants to have the control. It is going to be challenging to make her understand that she is not allowed to take them out, only a grown up can. We just put them right back in when she takes them out. She even laughs and runs away when she does it, a sure sign that she is doing it just to push our buttons, because it is the same reaction as when she is messing with something she knows she's not supposed to. As soon as we get up and come to get her, she giggles and runs away, usually ending up hiding in her butterfly tent that we have set up in our living room.
She wore them all the way home from the doctors office with no problems- she looked around, made noises, and didn't even touch them until we got home. I sat in the backseat with her so it would be easier to make sure she didn't pull them off and toss them (like she does with anything else when we're in the car)- and talked to her. She turned toward me when I called her name- which was just amazing. I could tell after doing it a couple times that she could really hear me, it wasn't just a coincidence that she turned in my direction. She even got a little startled one time, maybe I talked too loud.
One thing I am having problems with is the feedback noise. The aids we have now are just loaners, and they have considerable feedback if she lays her head down on them, or if they are not in all the way with a tight seal. I am afraid that she will hear this, and not like having them in for fear that noise will happen. I always turn them off before I put them in or reposition them so she doesn't hear that noise. We hope that if these help her, and this is the route we need to go with her- that the permanent aids we will get for her will be a little better. They better be for what we have to pay for them.
Now that the aids are in, I really have to get a grip on reality. My daughter has a disability. She will need help hearing for the rest of her life, whether it is with hearing aids, an implant, whatever. I still love her just the same, of course. In fact, even just last night I think I realized she gave me more patience through this. I am sympathetic to her, I guess- which makes me more patient and try to help her. Her dad got pretty frustrated with her taking them out- and I did too at first, but then all of the sudden I felt calmer- I put them back in and didn't get mad at her. The only thing I did differently from any other night, is that last night I held her in bed with me and rocked her to sleep. She was kicking and screaming wildly- more than usual, which made me think she was probably scared and confused as to why she could hear things just a few minutes ago, and them mommy and daddy took it away. I couldn't bear her laying in her crib alone in silence after just being able to hear for the first time. She finally went to sleep, and i cuddled her and kissed her for a while before laying her in the crib.
It is going to take some time for me to really wrap my head around all of this, and get used to her new situation. I think I am finally comin to terms with it, but we shall see how the next 3 months with these loaner aids pans out.
It is still going to take some time before she may "learn to listen"-know when someone is talking to her, where the sound is coming from, and what the words mean. I am happy that she finally has the help she needs, though. She seemed so happy to have them in for the most part. I can see, though- that these are going to be part of the daily power struggle that any parent deals with when they have a very active toddler. She pulled them out about 6 or 7 times last night- not because I think she doesn't like them or doesn't want to wear them, but because she wants to have the control. It is going to be challenging to make her understand that she is not allowed to take them out, only a grown up can. We just put them right back in when she takes them out. She even laughs and runs away when she does it, a sure sign that she is doing it just to push our buttons, because it is the same reaction as when she is messing with something she knows she's not supposed to. As soon as we get up and come to get her, she giggles and runs away, usually ending up hiding in her butterfly tent that we have set up in our living room.
She wore them all the way home from the doctors office with no problems- she looked around, made noises, and didn't even touch them until we got home. I sat in the backseat with her so it would be easier to make sure she didn't pull them off and toss them (like she does with anything else when we're in the car)- and talked to her. She turned toward me when I called her name- which was just amazing. I could tell after doing it a couple times that she could really hear me, it wasn't just a coincidence that she turned in my direction. She even got a little startled one time, maybe I talked too loud.
One thing I am having problems with is the feedback noise. The aids we have now are just loaners, and they have considerable feedback if she lays her head down on them, or if they are not in all the way with a tight seal. I am afraid that she will hear this, and not like having them in for fear that noise will happen. I always turn them off before I put them in or reposition them so she doesn't hear that noise. We hope that if these help her, and this is the route we need to go with her- that the permanent aids we will get for her will be a little better. They better be for what we have to pay for them.
Now that the aids are in, I really have to get a grip on reality. My daughter has a disability. She will need help hearing for the rest of her life, whether it is with hearing aids, an implant, whatever. I still love her just the same, of course. In fact, even just last night I think I realized she gave me more patience through this. I am sympathetic to her, I guess- which makes me more patient and try to help her. Her dad got pretty frustrated with her taking them out- and I did too at first, but then all of the sudden I felt calmer- I put them back in and didn't get mad at her. The only thing I did differently from any other night, is that last night I held her in bed with me and rocked her to sleep. She was kicking and screaming wildly- more than usual, which made me think she was probably scared and confused as to why she could hear things just a few minutes ago, and them mommy and daddy took it away. I couldn't bear her laying in her crib alone in silence after just being able to hear for the first time. She finally went to sleep, and i cuddled her and kissed her for a while before laying her in the crib.
It is going to take some time for me to really wrap my head around all of this, and get used to her new situation. I think I am finally comin to terms with it, but we shall see how the next 3 months with these loaner aids pans out.
Friday, March 27, 2009
Faith
So my mom and Jonathan have been on me a lot lately about my faith. They keep saying that I need to put this in God's hands and pray on it. Now, I have never been the biggest religious person... I won't say I don't believe in God, but I am just not the church-going type if you know what I mean. I guess there has to be something out there bigger than us- and I do believe that miracles can happen. My mom tried to make the point to me that my dad (who died of cardiomyopathy when I was 11) was a miracle because his heart actually shrunk, and the doctors did not know how or why. Sure, amazing, miraculous even... but he still died. I can hold on to the fact that God let him have more time with his family before dying, but inside I am still angry he had to die.
Then there is my mom- she has "almost died" more times than I am comfortable with. Well, I would still be uncomfortable with once, but you get what I'm saying. She is quite possibly a walking miracle herself, so her faith is strong as it always has been. She believes that as long as you say thank you to God every day for your blessings, and say "all is well", that God will work for you in those areas of your life. I don't know how much I believe that God is going to make my little girl be able to hear... prove me wrong, Jesus! I feel bad that I feel this way, but my faith in miracles might not be as strong as others.
So now that I am trying to move on to accepting this, I do often wonder where God fits into the picture. Is this supposed to be a good thing? Supposed to teach me something or open my eyes? Maybe, but I find that unfair. My little girl doesn't deserve this. God was supposed to bring her into this world perfect. Sure, you can argue that she is God's vision of perfect for her as an individual- but what if there were no hearing aids? What if the hearing aids don't help? God just wants her to be deaf? It is all so controversial and confusing for me, so I decided to leave God out of this.
Rather, we will deal with this on our own and hope (and pray?) for the best. Jonathan's faith is so much stronger than mine, especially right now. I hope one day I can feel that way, but for now I am still unsure about a lot of things, and sadly, my faith is one of them.
Then there is my mom- she has "almost died" more times than I am comfortable with. Well, I would still be uncomfortable with once, but you get what I'm saying. She is quite possibly a walking miracle herself, so her faith is strong as it always has been. She believes that as long as you say thank you to God every day for your blessings, and say "all is well", that God will work for you in those areas of your life. I don't know how much I believe that God is going to make my little girl be able to hear... prove me wrong, Jesus! I feel bad that I feel this way, but my faith in miracles might not be as strong as others.
So now that I am trying to move on to accepting this, I do often wonder where God fits into the picture. Is this supposed to be a good thing? Supposed to teach me something or open my eyes? Maybe, but I find that unfair. My little girl doesn't deserve this. God was supposed to bring her into this world perfect. Sure, you can argue that she is God's vision of perfect for her as an individual- but what if there were no hearing aids? What if the hearing aids don't help? God just wants her to be deaf? It is all so controversial and confusing for me, so I decided to leave God out of this.
Rather, we will deal with this on our own and hope (and pray?) for the best. Jonathan's faith is so much stronger than mine, especially right now. I hope one day I can feel that way, but for now I am still unsure about a lot of things, and sadly, my faith is one of them.
Thursday, March 26, 2009
No Aids Yet...
OK so the hearing aids didn't come in again today- well, the earmolds are not in. So I will get to go to the sonogram after all. I am more excited for that than I was for the aids, as I stated yesterday. I am getting a little impatient, though- I would like to see her reaction to (hopefully)hearing. One more day, I think- they should be in tomorrow at the latest from what they tell us. I am off to see my baby neice now! Makes me want to have another one, but with everything that is going on, I am still too scared to commit to that.
Wednesday, March 25, 2009
Hearing Aids
Well, Zoe's hearing aids came in today. The audiologist- well, from now on she will just be Dr. Robin... anyway, Dr. Robin had to program them, and the ear molds should be in tomorrow. Jonathan found this out when he called them- he is so excited that he couldn't wait for them to call us. Well, I talked this over with my sis-in-law Jess today. I am having a hard time feeling excited about this. Sure, it will likely make me very happy to know that she can hear me- but I am not excited. I am not excited, happy or optimistic like everyone else seems to be, and I don't know why.
I simply cannot manage to see the good in all of this. I know I should be counting my blessings that she is even alive and healthy- but I can't. I can't look at my baby and know that she will have this hardship to deal with that other kids don't have to deal with for the rest of her life, and be happy. I guess my mind may change after tomorrow, when we are supposed to go get the aids- but I don't know. Is it normal to feel this way? Should I be happy and/or excited about tomorrow? Jess (currently preggo) is having a 4D sonogram tomorrow evening, and I was actually more disappointed to miss that than miss the hearing aids. I guess because I would rather be happy seeing my perfect little baby neice than to deal with the reality of our situation.
I guess we will have to see what tomorrow brings, but as of right now I don't really care what happens tomorrow. We waited this long for a diagnosis, We can wait another day for hearing aids. I try to hide these feelings from Jonathan because he is always the one who trys to be strong, and I want to show him that I can accept and deal with this- but, truth be told- I can't.
I simply cannot manage to see the good in all of this. I know I should be counting my blessings that she is even alive and healthy- but I can't. I can't look at my baby and know that she will have this hardship to deal with that other kids don't have to deal with for the rest of her life, and be happy. I guess my mind may change after tomorrow, when we are supposed to go get the aids- but I don't know. Is it normal to feel this way? Should I be happy and/or excited about tomorrow? Jess (currently preggo) is having a 4D sonogram tomorrow evening, and I was actually more disappointed to miss that than miss the hearing aids. I guess because I would rather be happy seeing my perfect little baby neice than to deal with the reality of our situation.
I guess we will have to see what tomorrow brings, but as of right now I don't really care what happens tomorrow. We waited this long for a diagnosis, We can wait another day for hearing aids. I try to hide these feelings from Jonathan because he is always the one who trys to be strong, and I want to show him that I can accept and deal with this- but, truth be told- I can't.
Monday, March 23, 2009
Discipline?
Lately I am finding it more and more difficult figuring out ways to discipline Zoe. It seems like I am constantly yelling at her- not because I want to, because I don't know if she can hear me. I have tried using the signs for "stop" and "no"- but she doesn't seem to respond well to those. I can handle disciplining a child- I have a 12 year old sister who I almost raised when I was just 12 years old myself. I didn't do too bad with her, I learned what punishments were effective for her age and it worked fine. I do not know how to discipline a hearing impaired child. I know she needs to learn boundries, and respect, and all of those things people teach their kids- but I just don't know how.
She doesn't understand why mommy is mad at her, she doesn't understand what I want from her. I feel terrible for even having to discipline her. Some days I want to just let her do whatever she wants just because I feel sorry for her situation. I know that is not the right thing to do for her, though. Zoe's main discipline issues lie in basic "meddling"- she picks up everything. She gets up on the chair to the dining room table and pours drinks out on the floor, or drowns herself in them trying to drink from a larger cup before I grab her off the chair. She runs with an outstretched arm across the vertical blinds, and yanks on them until I go get her. I can see that she knows what pushes our buttons, she even takes off running the minute someone stands up to grab her away from what she is doing.
Maybe this doesn't have as much to do with her being hearing impaired as it does her just being a toddler, but I am finding it hard to figure out what to do with her sometimes!
She doesn't understand why mommy is mad at her, she doesn't understand what I want from her. I feel terrible for even having to discipline her. Some days I want to just let her do whatever she wants just because I feel sorry for her situation. I know that is not the right thing to do for her, though. Zoe's main discipline issues lie in basic "meddling"- she picks up everything. She gets up on the chair to the dining room table and pours drinks out on the floor, or drowns herself in them trying to drink from a larger cup before I grab her off the chair. She runs with an outstretched arm across the vertical blinds, and yanks on them until I go get her. I can see that she knows what pushes our buttons, she even takes off running the minute someone stands up to grab her away from what she is doing.
Maybe this doesn't have as much to do with her being hearing impaired as it does her just being a toddler, but I am finding it hard to figure out what to do with her sometimes!
Confused...
I find myself more and more confused as this journey continues. Jonathan told me the other day about a program that our doctor showed him. It takes a sound- say, a barking dog or a bus, and adjusts it to the level at which they say Zoe can hear. He said he could not hear the barking dog at all when she adjusted it, and could barely hear the bus. Why, then- does zoe startle when I yell her name from across the room? She must hear something, right? Of course, I don't want to slip back into the denial phase, but I am simply confused. I am not denying that Zoe has a hearing problem- it is obvious when i call her name that she usually does not turn around. I just don't understand why sometimes she appears to have heard something, and sometimes she doesn't.
This week Zoe will be getting her hearing aids, and we are all very anxious and excited to see what happens. I know my child, so I know that Zoe is going to be a little irritated and want to pull them out every 10 seconds- but we have to make her keep them in. The doctor said the most important thing we can do is to make her understand that we are the boss, and that she never takes them out by herself- that an adult must always help her. I keep thinking about all the responsibility that is going to come with this- I hope I can handle it! I am struggling with accepting that this is happening still. I have no idea what is taking so long to move on, but I am stuck just outside acceptance. I am in a place where I know that this is happening, I understand what is going on, but I don't want to believe it.
I love my baby- and I don't think I treat her any differently since we found this out, but I do find myself becoming immediately sad as soon as someone mentions it. Whenever Jonathan starts telling someone about her getting the aids, (because I usually will not start that conversation) I feel my mood immediately change, and sometimes I just leave the room. It doesn't help much that whenever that conversation does happen, the first thing people say is "awww... poor baby!" or "I'm sorry". Like she's dying or something. We went to a cookout on saturday, and of course I walked right into Jonathan having a conversation with friends about it.
One of the girls was a kindergarten teacher, and she was the sweetest girl I think I have ever met. She played with Zoe, talked to her... Zoe loved her. The only thing was, I am still very sensitive about this, and since they were already talking about it, we ended up in a long conversation about it. I almost felt obligated to talk about it, even though it hurts. I just want to push this away and never speak of it again, but I know I can't. It's here, and it's real, and it is not going away.
This week Zoe will be getting her hearing aids, and we are all very anxious and excited to see what happens. I know my child, so I know that Zoe is going to be a little irritated and want to pull them out every 10 seconds- but we have to make her keep them in. The doctor said the most important thing we can do is to make her understand that we are the boss, and that she never takes them out by herself- that an adult must always help her. I keep thinking about all the responsibility that is going to come with this- I hope I can handle it! I am struggling with accepting that this is happening still. I have no idea what is taking so long to move on, but I am stuck just outside acceptance. I am in a place where I know that this is happening, I understand what is going on, but I don't want to believe it.
I love my baby- and I don't think I treat her any differently since we found this out, but I do find myself becoming immediately sad as soon as someone mentions it. Whenever Jonathan starts telling someone about her getting the aids, (because I usually will not start that conversation) I feel my mood immediately change, and sometimes I just leave the room. It doesn't help much that whenever that conversation does happen, the first thing people say is "awww... poor baby!" or "I'm sorry". Like she's dying or something. We went to a cookout on saturday, and of course I walked right into Jonathan having a conversation with friends about it.
One of the girls was a kindergarten teacher, and she was the sweetest girl I think I have ever met. She played with Zoe, talked to her... Zoe loved her. The only thing was, I am still very sensitive about this, and since they were already talking about it, we ended up in a long conversation about it. I almost felt obligated to talk about it, even though it hurts. I just want to push this away and never speak of it again, but I know I can't. It's here, and it's real, and it is not going away.
Friday, March 20, 2009
Why?
Why am I still asking why? Why does it hurt just as bad when the audiologist discusses Zoe's hearing loss the tenth time as it did the first time? Today was the appointment to get ear mold impressions taken, and order Zoe's hearing aids. I am still in disbelief that this is happening- here I am, back in the denial stage again. I am grasping in vain for any hope that this is not the fate of my baby girl for the rest of her life. I asked the doctor if there was any hope of her growing out of this, and she flat out said no. She said sensorineural hearing loss is not fixable, and that we need to be proactive and just deal with the issue at hand. She is in the severe to profound range, so she's basically deaf. It's hard to just accept this and move forward- how do you do that???
Our doctor is great, though- she has been helping us from day one. She got the financing together, had all the paperwork filled out ahead of time... she's really great. Now we just wait for the hearing aids to come in- hopefully by the end of next week, when we call Zoe's name she will turn around. Now I have to start thinking about all the resonsibility that is going to come with this- I mean, I have to make sure she keeps them in and doesn't throw them in the toilet or the trash (she throws everything in the trash, LOL)- and that she understands that only a grown up can take them out... I'm sure there is maintenence and upkeep, cleaning them... it's all so much to think about at once.
I have been trying to push past asking myself "why" all the time, and accept that it is happening and it is not going away. I just can't shake the feeling of overwhelming guilt that I did something wrong to cause this. Even when I am happy, I am miserable on the inside. There is nothing like the pain of seeing your child have to deal with a disability. NOTHING. Even though she is too young to understand what is going on, the mere fact that she has to go through this is killing me inside. Thank God for her daddy, without him I don't know where I would be.
Now we just wait for the hearing aids to come in, and hope that they help her. if they don't help her, we could be looking at a cochlear implant- a surgery. Financing or not, this is expensive- and I have no idea if we are going to be able to afford whatever this throws at us now or in the future. I guess only time will tell.
Our doctor is great, though- she has been helping us from day one. She got the financing together, had all the paperwork filled out ahead of time... she's really great. Now we just wait for the hearing aids to come in- hopefully by the end of next week, when we call Zoe's name she will turn around. Now I have to start thinking about all the resonsibility that is going to come with this- I mean, I have to make sure she keeps them in and doesn't throw them in the toilet or the trash (she throws everything in the trash, LOL)- and that she understands that only a grown up can take them out... I'm sure there is maintenence and upkeep, cleaning them... it's all so much to think about at once.
I have been trying to push past asking myself "why" all the time, and accept that it is happening and it is not going away. I just can't shake the feeling of overwhelming guilt that I did something wrong to cause this. Even when I am happy, I am miserable on the inside. There is nothing like the pain of seeing your child have to deal with a disability. NOTHING. Even though she is too young to understand what is going on, the mere fact that she has to go through this is killing me inside. Thank God for her daddy, without him I don't know where I would be.
Now we just wait for the hearing aids to come in, and hope that they help her. if they don't help her, we could be looking at a cochlear implant- a surgery. Financing or not, this is expensive- and I have no idea if we are going to be able to afford whatever this throws at us now or in the future. I guess only time will tell.
Wednesday, March 18, 2009
Is it wrong...
Is it wrong, or maybe even selfish of me- to consider not having any more children? Maybe this is just a facet of the grief of losing my "perfect baby" and having to deal with a child with a disability. Since Zoe was born, I wanted more babies. I wanted a large family, as many as we can support- as my fiance says. We both wanted to have another relatively soon so they would not be so far apart in age. Now I am struggling inside with whether or not I even want to try to have any more kids. I mean, this pain is tearing me apart- how would I handle it if our next child has a disability as well? What if it is an even worse disability than hearing impairment? I just don't know if I am a strong enough person to deal with that.
Even if we do decide to have another baby, my pregnancy will be stressful and scary just thinking about all the things that could go wrong- apparently some things can go wrong and not be detected until long after the birth. Sure, when I was pregnant with Zoe, I thought occaisionally about birth defects and such, and scared myself a little- but she looked great on ultrasounds, and soon those fears faded. Now, 18 months after her birth, I have to face the reality that something is indeed wrong with my baby. "Wrong"- what a way to put it. There's nothing "wrong" with Zoe. She just needs a little help hearing. I keep trying to tell myself that. I hate that I have feelings that Zoe is no longer my "perfect" child. I hate those feelings and I hate myself for having them. I should not think that way about my beautiful little girl- she is perfect.
My internal struggle is that I very much want another baby, but I just don't want to have to go through this kind of pain ever again. You see all these stories about kids with down syndrome, cancer, and all these horrible diseases and disorders- and then you see their parents. Marching beside them in a walk to raise money for research, accepting their fate and then doing everything they can for their child- they are so strong. I wonder if I am that type of person. I think I just need my time to grieve and accept what is happening in my life. After all, this is going to turn all of our lives upside down.
So, do I accept this obstacle and have another baby (one day...) despite all the things that could go wrong? Or do I simply learn to live with the cards we have been dealt and not tempt fate? Our audiologist suggests we get genetic testing before deciding to have another baby. So now the excitement of making the decision to have a baby has been taken away from us. We can't simply say- "we're ready, let's start trying for another" like most couples would. It makes me wonder if I even want to know what would come of that testing, and what my decision would be if it was not a favorable outcome. Is it fair for me to deprive Zoe of having siblings for my own reasons?
I guess this decision is one we must make together some time in the future. It is a lot to think about right now on top of everything else we are dealing with.
Even if we do decide to have another baby, my pregnancy will be stressful and scary just thinking about all the things that could go wrong- apparently some things can go wrong and not be detected until long after the birth. Sure, when I was pregnant with Zoe, I thought occaisionally about birth defects and such, and scared myself a little- but she looked great on ultrasounds, and soon those fears faded. Now, 18 months after her birth, I have to face the reality that something is indeed wrong with my baby. "Wrong"- what a way to put it. There's nothing "wrong" with Zoe. She just needs a little help hearing. I keep trying to tell myself that. I hate that I have feelings that Zoe is no longer my "perfect" child. I hate those feelings and I hate myself for having them. I should not think that way about my beautiful little girl- she is perfect.
My internal struggle is that I very much want another baby, but I just don't want to have to go through this kind of pain ever again. You see all these stories about kids with down syndrome, cancer, and all these horrible diseases and disorders- and then you see their parents. Marching beside them in a walk to raise money for research, accepting their fate and then doing everything they can for their child- they are so strong. I wonder if I am that type of person. I think I just need my time to grieve and accept what is happening in my life. After all, this is going to turn all of our lives upside down.
So, do I accept this obstacle and have another baby (one day...) despite all the things that could go wrong? Or do I simply learn to live with the cards we have been dealt and not tempt fate? Our audiologist suggests we get genetic testing before deciding to have another baby. So now the excitement of making the decision to have a baby has been taken away from us. We can't simply say- "we're ready, let's start trying for another" like most couples would. It makes me wonder if I even want to know what would come of that testing, and what my decision would be if it was not a favorable outcome. Is it fair for me to deprive Zoe of having siblings for my own reasons?
I guess this decision is one we must make together some time in the future. It is a lot to think about right now on top of everything else we are dealing with.
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