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.

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.

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.

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!

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.

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.

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.

Dealing with the news

So it's been 48 hours since the ABR and receiving the news of the severity of Zoe's hearing loss. I am dealing with this the best way I know how- even though that means not wanting to talk about it, shutting people out, and crying on the inside and outside pretty much all the time. OK, so maybe that is not the most healthy way of dealing with things, but I am really not sure what to think right now. Zoe is still my little girl- I love her more than anything in the world, but as my fiance can tell you, I do not deal with bad news well. I keep blaming myself, mulling over what i could have done to prevent the hearing loss over and over until it drives me insane.

Jonathan keeps telling me that I need to put those feelings aside and focus more on the task at hand- doing whatever it takes to help Zoe in whatever way possible. I understand that, I really do- but this pain in my heart is clouding my every thought. I can't concentrate at work, I sit and think about her all day- kind of like when I first returned to work when she was an infant. I wish so much that we could afford for me to stay home with Zoe so I could make sure she gets worked with, and gets the help she needs.

My friend told me that day that it could be worse- and I think I said something to the effect of "I'm really tired of hearing that today". She came back with telling me about a friend of hers who has a young boy in her family who is fighting leukemia, whose family is forced to live at Johns Hopkins while they watch their child die. As much as the news of Zoe's hearing loss hurt, her telling me that made me realize that we really are blessed to have her here- happy and healthy. She needs help hearing, but she's not going to die from it. I guess things can always be worse no matter what situation you are in, but no matter what, it's going to hurt.

I am very excited for Zoe to get her hearing aids- I can't wait to get the results of the real ear measurement, so we can know exactly what we're dealing with, and to see Zoe's reaction to finally, after 18 months, be able to hear more clearly. I wonder how much she will be able to hear, if the aids will help her right ear at all, if she has that auditory nerve and can be helped, what the future holds for her... there are so many unanswered questions. These questions will be answered in time, I guess- but it's so hard to look at her and know that she cannot hear me talk to her, sing to her... it's heartbreaking.

It's Wednesday, so only 2 more days until she sees her audiologist again. So now we just wait, like always...

ABR test

Yesterday was the day of the long-awaited ABR test. I was so nervous I felt sick to my stomach and had a headache all night the night before. They would have to sedate my baby girl to get an accurate result, and this would be her first sedation- which always comes with possible complications. We woke up at 5:30 am to get ready to leave for the 45 minute drive to Saint Joseph's Hospital for her 7:30 am appointment. Before I knew it, they gave Zoe the oral sedative and she was asleep in no time.

Watching them attach the electrodes to her tiny head and put things in her ears was heartbreaking. The test took over an hour- sitting in a darkened room holding Zoe's hand on a hospital bed as she slept. The doctor was silent through the whole test. After she was done, she broke the news to us that Zoe showed no auditory response in her right ear- meaning that her machine could not measure any hearing in that ear. Zoe hears at about 50 decibels in her left ear- a moderate to severe hearing loss. With hearing aids, she may be able to hear with her left ear, but they are unsure about her right ear.

It is a possibility that she may have been born without the auditory nerve on that side, in which case she will remain pretty much deaf in that ear for the rest of her life, no aids- not even a cochlear implant will really help her. They are also unsure if her hearing loss is genetic, progressive, or if it will stay the same. We are incredibly worried that it will progress further. Yesterday was the worst day of my life since the first time they told me she would need hearing aids. Now they are telling me it is worse than they thought it was, and there are so many unanswered questions.

The next phase of the journey is to schedule an MRI to see if that nerve is present behind her ear or not. That will determine whether or not a hearing aid will help her at all. We can't wait any longer than we already have to get the hearing aids, though- so we have an appointment scheduled on Friday to have another set of impressions taken of Zoe's ears, and I think we will be getting loaner aids until we can figure out how to afford this. Hearing aids are incredibly expensive, and our insurance only covers so much- the benefit is not very good. I make too much money to get medicaid or any type of assistance with these massive bills that just keep rolling in.

I have a million thoughts flying through my head at this moment- I feel lost and alone. I know we are not the only family that is going through this, and I also know it could be much worse, but I still find myself asking why. Why us? Why Zoe? I am angry, scared, and depressed. Jonathan had his moment of grief, but he bounced right back into action- wanting to know what we do from here and how we can help her. He has always been the stronger one, which has been my source of strength through all of this. I can't say how long this pain will last, but right now it hurts, it hurts bad. I have made the essential phone calls- to Dr. Horton, our pediatrician; to Dr. Henning and Dr. Robinson, our Audiologists; and to a couple friends for support. My family and friends have been another source of strength- they have been nothing but supportive through all of this, and will continue to be, and for that I thank them.

Now we wait for the next test, the next doctor, the next piece of news...

Our Story

Hi, I'm Lisa. My fiance Jonathan and I were overjoyed upon the arrival of our beautiful baby girl, Zoe Simone- on Sunday, September 23rd 2007. She was perfect in every way- from her tiny little fingers down to her pudgy little toes. We were immediately in love with her, and have been ever since. Our journey began on that day with Zoe's first newborn hearing screening test. The nurse explained that many c-section babies would not pass this test, and that we should not be concerned even if she did not pass it for several weeks following her birth, because her inner ear would retain some of the ambiotic fluid she lived in all those months. So, she failed the first test, and the second before we left the hospital.

We didn't give it a lot of thought- we just scheduled another screening several weeks down the road to give her time to get rid of that fluid in her ears, and happily strapped our new bundle of joy in her pretty pink carseat and took her home. Zoe was a wonderful baby- she slept through the night when she was just a few weeks old, ate well, and seemed to be doing well. She was always in the 90th percentile for her height and weight. She did everything a normal infant would do. We had no idea what was in store for her, for us.

We took her to an audiologist for the first of many times when she was a few weeks old. She once again failed the standard OAE test. The audiologist was not very concerned because of her age, and scheduled another test for January 2008. I was a little concerned at that point, but eased by the passive attitudes of the doctors. At 4 months old, we returned to the Audiologist for a follow up OAE test. To my relief, Zoe passed that test with flying colors. I left the office relieved and blissfully unaware of what the future held for my baby.

Months passed, Zoe grew- and developed chronic ear infections. She seemed to be on antibiotics all the time from the time she was 4 months old until after she turned one. Ear infections are common, and I took this as just part of having a baby. I had also begun to notice that she didn't really talk like other babies her age. Her vocal sounds were limited to cooing and long vowel sounds- not actual words. Other babies her age had 5-10 recognizable words. She had said "da-da" very clearly for several weeks/months- then nothing. She stopped saying that completely. Then she finally picked up "ma-ma" and i was thrilled! However, by her first birthday, this was still the only word in her vocabulary.

Our pediatrican was concerned at the frequency of the infections and Zoe's lack of vocabulary and wanted to have her ears looked at again. Shockingly, this time Zoe failed the hearing test. At this point, I was confused and scared. The audiologist said she thought Zoe was still retaining fluid in her ears, the same thing that caused all of the ear infections. She suggested we see an ENT to explore the option of tubes in her ears to allow the fluid to drain, alleviate the infections and help her to hear clearly. Which, to me, if that was the worst that was going to happen, I was fine with that. Excited, we took her to the ENT for an evaluation. The ENT said she had no fluid behind her ears, and refused to operate on her. My heart sank. Why is she failing her hearing tests, then? I was desperate for answers.

By the time Zoe was 16 months old, we were referred to YET ANOTHER audiologist in Annapolis, hoping she could figure out why Zoe was having mixed results. She performed another OAE test. From there, it was like a freight train- the diagnosis and information came at us hard and fast, and it has not stopped since. Zoe's audiogram showed a moderate to severe hearing loss in both ears. She will have to, at best- wear hearing aids for the rest of her life. They had already fitted her and made mold impressions. I was at work that day, and unable to attend the appointment. My fiance called me with the news- I broke down. I sobbed so hard I made myself sick. I left work for the day and could barely drive home. In the coming days and weeks, I flew through the stages of grief so fast, I thought I might go crazy. Denial, Anger, Depression. Denial, Denial, Depression. I could not get past this life altering news. It was like someone knocked the wind out of me. I still have not passed the anger or depression phase, but have moved more into the acceptance phase each day.