Milk Please!

I know that I am back logged by about 30 posts, and most of them I have started and need to finish, but I just had to record this small little accomplishment today.

Calvin has always been a fussy eater. He was very difficult to nurse, and weaned himself at 7 months old. Today, while I was trying to feed him lunch, he was angry, frustrated and didn't want to eat, this is not unusual. After about 5 minutes of me trying though, he pushed the spoon away and put his little hand right in my face and signed "MILK!" then with his other hand, signed "PLEASE!"

I know it seems so small, but to me its miraculous. This is the first time he has clearly and concisely communicated with me. I have a lot to say about the fear I felt when we were told he is deaf, and perhaps that's better suited for another post, but my heart is a little lighter today just for the fact that I KNOW he understands me now. No matter how pitiful my attempts at signing have been, they're paying off. My baby is talking to me, and telling me what's on his mind... MONTHS earlier than any of my other children did.

There are blessings in every circumstance we face in life. Sometimes, they're just delayed until the meaning will be  clear enough for us to appreciate.

Calvin can sign!

The tail end of Calvin signing "Mom"

Calvin has been signing a few words for a few weeks now, but his fluency is getting better and better. Today, I was FINALLY able to catch him signing on video!! I was so excited! I don't know how much storage I've burned through on my phone trying to catch it, but I finally got it. He can sign "mom", "milk", "dad", "dog", and "toy". Today at lunch he signed "Mom" and  "Milk".

To show you what it's supposed to look like, I thought I would post these videos:
This first video shows the sign for "mom". In our video you can see Calvin do it a few times. It's not 100% clear, but early signing isn't. Just like when a baby learns to speak, early signing takes time to get it exact. Either way, whether your baby speaks or signs, you still recognize and applaud their efforts.

This video shows the sign for "milk". Calvin is very clear with this sign, and I don't think that's an accident on his part. He takes food very seriously. :-) 

This is the video of Calvin signing. It does take a little bit (about 2 minutes and 45-50 seconds) but he does eventually get to it. Sorry for the length, I'm not a "techy" type person. If I knew how to edit it, I sure would. You might want to turn your volume down a tiny bit. I get kind of excited for him!

We have worked so hard to be able to communicate with him, and it's finally paying off. I can't describe to you how light and happy it makes my heart every time I see him even babble with his hands. He's such a bright and beautiful baby, and I'm feeling especially thankful that there is a way for him to communicate with us. I'm also grateful that there are so many people who are willing and patient enough to teach me.  This probably isn't the most eloquent post I've written, but my heart is pretty full at the moment. This is the bright spot needed after a long and disappointing week. 

A note from Rob

I guess it was May when Mindy, my wife, asked me to do the next blog posting. I said sure thinking it should be an easy one based on the weekend we had just had. Looking back, I will admit that I was/am a little intimidated by how well my wife writes. My writing will not be as good but bear with me. I am finally getting to that point where I feel I better start writing or I may forget some of these great moments Calvin has blessed us with.

                Her request that I write the next post stemmed from some experiences we had while we were visiting her family in May. At this point I don't really recall most of the weekend but that Sunday we had just seen our little man, Calvin single handedly take Mindy's family by storm. We had gone to Idaho Falls/ Rigby to welcome her parents back from a mission in the Philippines.

                It had been rough for a while for our  family due all the issues we had/ have been going through and I had some anxiety about this weekend, but somehow the weekend managed to move along relatively smoothly without major issues. Sunday morning rolled along so the family prepared and went to church.  I mostly remember going to church to walk in and see Mindy's sister trying to sign that she wants to give Mindy and I a break and hold little man for us. Mindy quickly retorted she needs to learn how to sign it properly before she gives him up. Little did my wife nor I know that for the next hour  or so we would be playing "Where's Calvin?" as we look about the chapel. It's not that he miraculously started walking at 3 months. He was a hit amongst the family and every five minutes or so, we would find him in another family members arms happy as can be and delighting those around him. He has a way with people when he smiles and giggles. People seem to come away glowing in happiness themselves.  I had to ask Mindy who's that holding him quite a few times that morning but eventually got to meet at least some of Mindy's extended family. For me, I finally felt a part of the family in a way at least - a contributor or at least proud daddy.

                Additionally, while at church that morning with the In-laws and Calvin off visiting family somewhere, “Called to Serve” was the song to be sung. I don't know it but apparently my wife knows it well. She heard and learned it as a child out there in nowheresville, Idaho... As the song started, people started singing. Mindy started signing the song to Carli, our daughter - who seems most genuinely interested in learning sign of the kids. I asked her after the song was over, "Where/ when did you learn that?"  It turns out that Mindy grew up in a deaf ward and she learned a lot of the sign language while watching the interpreter in church every Sunday. I felt compelled to inform her right there and then this is why I married you. You were and are who the mother of my child is supposed to be... Thank you for helping my son to be everything he is.

                I've been thinking a lot lately, and I guess I have a different perspective on Calvin being deaf. I do not know exactly what it is like but as some of you know, I am severely deaf and have a hearing aid in both ears. I am not ashamed of them and have worked very hard to surpass my hearing limitations, but I will admit for a long time, I hated them and everything associated with them - they made me different when I just wanted to fit in.  Without them, however,  let's just say screaming does not do much for me if I even notice. I read lips. I read body language. I am only now learning sign language. I do not know whether I was steered away or whether it was a by product of where I grew up in rural Louisiana that prohibited my learning of it. My parents briefly introduced me to the deaf culture but decided that they wanted me to maintain mainstream education. I am not sure how much of this was based on when we moved from Massachusetts to Louisiana, there may not have actually been a deaf culture as had been in MA. They had taken me several times to a School of the Deaf and Blind but I don't know how many times. I remember going there but mostly I remember the buildings and the campus. Imagine that. :) I  do believe my parents wanted me to learn as a normal child might but knew I was behind when I finally failed a hearing test at 4 yrs old. ( I will explain this another time. )  I struggled as a child who was hard of hearing, but I do not look at myself as disabled as others may. I would not be who or what I am today without the struggles I had as a child, or the wonderful parents who helped, loved and supported me so much then and now.

Having hearing loss makes EVERYTHING more difficult. Most never really understand this as many of us think of hearing  as hear = listen. Right? Wrong. Quite often those with difficulties may not hear but are always trying to listen. Big difference. Trust me. We don't actually EVER hear it. When you say something to us, we are essentially trying to translate, yes, translate like it is another language. Needless to say, my processing of what people say sometimes isn't always correct and can create awkward moments or hilarious ones just as well. My deciphering of what is said gets worse with any number of things like surround noise, wind, weather, multiple people talking, lack of knowledge of speaker, speed (time to process), accents, slurred speech, inability to see (read) lips, body language, and even  how tired I am impacts how well I "hear". The list can go on and on.

                Over the years I have tried and overcome most of my issues with hearing loss.  I will never say it is easy. Frankly it is downright difficult. With every conversation, I am listening, processing and trying to guess not what you are wanting to hear as a response but what the heck you just said. From there, if I still have a few seconds I may try to guess what you want me to say, but don't bet on it. As a day wears on, with conversations with many different people or uncontrolled environments, it wears me down.

                TO the point.... I do not know what Calvin is going to face in life. I do understand some of it, but not to his extents. Calvin, is as they say, profoundly deaf. From severely to profoundly deaf does not sound like much to you all but in my perspective, it is extreme in the difference. He currently hears nothing. As I had asked the audiologist after the initial tests. "Nothing, Nothing at all?" She said "Nothing."

Sometimes I worry and even shed tears for him as I wonder where he is headed and what will he do with his life. Will he be successful in getting a cochlear implant? I do not know these things but I usually recover quickly as I have some knowledge of what he will go through and knowing I can help guide him.

                Calvin may be deaf. He may be able to hear with one ear next year when we attempt to get cochlear implants. I don't know if he will for sure and am okay with it. Mindy, my wife, has been hardcore in learning the sign language. The kids have been good at helping as well. We learn from each other and try to utilize it in front of Calvin often. We have not become fluent yet or non-stop users but that is our goal.

                He may or may not hear our love but certainly he can see and feel it. His eyes are the brightest blue with a little white ring like lightening around his pupil, and they do not miss much. He smiles and giggles all the time. I think  his smile and giggle is a learned response since that is what he so often sees from his beautiful mom. This small child of mine holds this family in his little hands. He enjoys the opportunity to touch and hold so many people. So many people have told us that Calvin fills a room with calmness - peacefulness.

                My son, even with the challenges he faces, will be someone. I know it from the bottom of my heart that he will be someone others will look up to someday. He already has left his mark on Mindy's family. He is a wonderful little guy who brings smiles to those around him, and I will do everything in my power to help this little man to become the best that he can.  There is nothing to worry about with him. Calvin, while young and deaf, carries my family name along for another generation. I can think of no one I'd rather have represent my parents into the next generation. Thank you Mindy again for all you've done and continue to do.

 Rob

 I will try to write shorter and more frequent. 

Learning to Fly

I started writing this post several months ago.. and just quit. It's been sitting here in my drafts folder since May. I didn't finish it because when I got pretty far along I stopped and read it and thought, "Wow. You're pretty whiny there Mindy." I couldn't delete it though, because I felt like the way I was feeling was pretty valid. I just couldn't complete my thoughts. At the time, I couldn't find the good in all of this... and then some amazing things have happened since May and now I can.

So if you forgive the whiny introduction, this is a pretty good summary of what we've been up to.

Tom Petty and Jeff Lynne wrote a song titled "Learning to Fly" and I've always loved it. Tom is not an overly attractive man, but I love his music. The lyrics have always reached me, and I could nod my head and say, "I get it". 

Yesterday I was sitting on the couch, holding Calvin and crying when this song came into my head. It was almost a perfect description of how I am feeling lately.

A few weeks ago we did a CT scan of Calvin's head and the results weren't surprising, but not what we wanted to hear either. We discovered the reason for his hearing loss, his Vestibular aqueduct is enlarged. It's a tiny canal that leads from the back of the cochlea to the brain. If it is too big, excess fluid and pressure will destroy the cochlea's ability to function. During this scan, some question was raised about his auditory nerves, so an MRI was performed to clarify the condition of them.

I have known since the CT scan that things were going to get worse. The conversations that I've had with his audiologist were all very----guarded and cautiously optimistic. Above that though, I just had a feeling. Mom's can tell I guess.

Yesterday we got a call from his surgeon's office. The nurse was not up beat and happy, but chose her words carefully. She spoke slowly and deliberately so I had plenty of time to absorb all that she was saying.

Apparently, Calvin's cochlea's are more deformed than we previously thought. His canals are underdeveloped and very small. She said that together with an enlarged vestibular aqueduct, this isn't usually a problem as far as getting an implant. (That was the whole purpose of these tests by the way, to determine how eligible he would be for an implant. ) Then she said "However". 

I wanted to hang up the phone. I didn't want to deal with any more bad news. It was just enough already. But since I was already on the line and had waited long enough for the results, I let her finish.

"However, we were concerned about the condition of Calvin's auditory nerves, and the scans showed that his nerve in his left ear is not present, and is deformed in his right."

The significance of this is that without a functioning auditory nerve, Calvin cannot have an implant, and therefore, never hear.

Boom. All the hope that I had that he would someday hear my voice expolded into a million tiny pieces on the highway as I drove home.

I think more than anything, I just felt very exposed. I am ashamed to admit, that I was hoping that Calvin could have an implant to spare me the risk of failing. Learning sign language is fun, but daunting. In the back of my mind I've been thinking, I'll learn what I need to so that we can get through this year, and then he'll get his implants and everything will be ok. He will never know how pathetic my attempt was.

As I was sitting on the couch, that song came into my head. "Learning to Fly, but I ain't got wings. Coming down, is the hardest thing."

How many of us have been asked or expected to do something that seems so unattainable?  Like flying without wings. "Coming down, is the hardest thing." Once you've started, how do you stop, turn around or change directions? You don't.

 "Them good old days, may not return". I can't ever go back to the sweet few days I had with Calvin before I knew anything was wrong. PLEASE don't misunderstand me here. I am in NO WAY disappointed with my son. I get really tired of people telling me, "You have to remember that he's perfect". I am sure it's their way of supporting and encouraging me. However,  How could I look at someone so beautiful and feel my heart nearly burst with pride and joy and still be disappointed in him or the way he was born? Never. But, I will never be able to go back to the time when I didn't know he had a disability. Same for my sons Aaron and Zack. I will never be able to go back to when I didn't know about Aaron's aspegers or Zack's learning disorder either.


 My friend Holly made an astute observation once when I had complained about the unfairness of his struggle. She pointed out, "Yeah, but he's not struggling with it. You are". Maybe there isn't some higher lesson that I need to take from this, but what if there is? Maybe it's selfish of me to think that there is, but I am hardwired to believe that the trials we face in this life are for a reason.

I have never been more afraid of failing than I am now......

So that is where I left things in May. Fast forward a little bit, and this is what has happened since then.

On July 28th, Me, Rob, Aaron, Zack, Carli and Calvin all went to Idaho Falls to run in the MAD marathon for the Olive Osmond Perpetual Hearing Foundation. This was a pretty important day for us, for a lot of reasons. All of the proceeds from the race went to support the Idaho School for the Deaf and Blind, and I would be nothing but an ungrateful turd if I didn't recognize the help and support that they have given to my family. Our regional consultant Mikkel, has been there for us and taught us so much about deaf culture, sign language and the developmental mile stones that Calvin should be hitting. Without their support, I would definitely be flying without wings.

This race was such an amazing experience in so many ways. So many people came together to love, support and cheer me and my little family on. My sister Stacy was so proactive in helping me to make an event of it. The morning of the race, I was so nervous. Although I used to run regularly, I have not for several years now. I'm out of shape, and was terrified of not being able to do well. Calvin deserves parents that try though, so I was willing to do it no matter how painful or embarrassing it was.

When I pulled up to the starting line though, I burst into tears. My friend Alan Johns had helped me design some T-shirts for all of us to wear during the race, and this is what I saw:

We made an awesome group! 

Me, My sister and my niece running in with Calvin

Rob and I just before the finish line 

I was so overwhelmed by how many people were there for Calvin, and those were the first happy tears I've cried in a very long time. As we started the race, I couldn't stop crying. For as far ahead as I could see, there was a line of runners in bright blue, all with Calvin's name on their back. My friend Sharilyn who first got me into running ran almost the entire way with me, then as I neared the finish line, my sister ran back for me and ran me up to my wonderful husband. He grabbed the other side of the stroller and together, we ran our baby in with everyone cheering for us.

After we were done running, we had all gathered together and our educator from the school for the deaf and blind came and said that Merril and Justin Osmond from the Osmond family were there, and had seen all of our shirts while running and wanted to meet us. I was flattered. They were genuine, kind and concerned. They asked about Calvin's prognosis and offered to help in any way that they could. It was such a surreal moment. I even behaved myself and refrained from asking stupid questions like, "Can I meet Donny? and "Are all of Marie's parts real?".. (Although I really wanted to).

All in all it was a beautiful day. I think the beautiful part is that 5 or 10 years ago I am not sure that this would have been possible. My family has pulled together and we are now so much closer than ever before. I can honestly say that they are my friends now, and I am amazed at our ability to love and share and grow. (I will be posting more pictures from the race later. It was simply too amazing to not share more about it.)

As I look back on this day, I realize where my wings are. They are my family, my friends, my husband and my kids. I can't do this alone, and the best part is that I've never been asked to. I've never been asked to silently sulk or cry myself to sleep. I've never been asked to carry a heavy heart. Nor have I been asked to fly. That's Calvin's job, not mine. It's my job to help him, prepare him, teach him, and then get out of his way and watch him go.

He's 6 months old now, and I can't believe how much has happened and changed in his short little life. He can already sign four signs : "Mom", "Dad", "Milk", "Toys". His laugh is infectious and his hugs and kisses are healing. His life is healing, and I am so blessed that he chose to share it with me.

Reality Check

I haven't written for a while, not because things have slowed down and there wasn't anything to write about or that we haven't been learning sign language... but because in a nut shell, things are just damn hard sometimes.

I don't think that Rob and I could have anticipated the strain Calvin's hearing loss would put on our marriage, or our family. My older kids have really struggled lately, and I am sure it has more to do with the lack of attention they're getting than anything. In addition to being profoundly deaf, Calvin has a blood disorder.. or two. We're not entirely sure what's going on yet, but the short version is that he has too few white blood cells (Neutropenia) and WAY too many platelets (thrombocytosis).  This means that until it's resolved, it's very easy for him to get sick. Which means that at a minimum, I have 3-4 doctor appointments a week for him between his pediatrician, his infectious disease doctor, and the hematologist that we will now be seeing. Most days... I am at a complete loss to try to manage it all on top of the house, a job and three other busy kids.

To help us navigate our way through the deaf culture here in Boise, we've joined a couple groups. One of them is called Hands and Voices. They provide a lot of support for whatever communication methods your family uses. Because we have chosen American Sign Language, we were invited to a practice session the other night. I had been working all day and frantically tried to wrap a project up so that I could get there on time, and like always, I was running late. I was tired, Rob was tired, we had both been working like crazy and both still had tender feelings from a pretty rough weekend. I was so close to cancelling and not going. Knowing what I know now, I will never, ever regret going.

The class was held at a McDonald's in Nampa, which was a little different, but easy enough to get to. When we walked in, we were so late that there was only the instructor, the interpreter and one other family there. A single mom named Misty, and her little boy named Lake. After introductions were made, everyone asked about Calvin. How old he was, how much hearing did he have, how much sign language did we know... etc. After we gave Calvin's story, it was Misty's turn, and I was completely and totally changed by what she had to say.

Her beautiful red headed, brown eyed little boy was almost 2, but still not able to sit up or hold his head up. He had no muscle tone, and was eating through a feeding tube in his nose. Every time he sneezed, he lost almost all that he ate and had to start over. When Lake was born, he had a hole in his heart and during open heart surgery, the life support machine failed. After 5 strokes he was left partially paralyzed, with cerebral palsy and profound hearing loss. He will never walk, talk, or hear, and he may not even be able to eat on his own due to his tongue being paralyzed from the strokes.

The most amazing part of Lake's story was how cheerful and happy his mother was. I know from my own experience that it is so easy to detach yourself and tell your story to strangers and appear cool, collected and happy... for about 5 minutes. I am certain that she has her bad days too, but this was not one of them. As the class progressed, she was teaching us a lot of sign language, all while cradling a healthy sized 2 year old in her arms. She was smart and funny, and her good humor made me ashamed of ever feeling sorry for myself. Then she said, "it's so good to see that you are both here. A lot of times, it's just one parent that comes. Lake doesn't have a dad, so it's just me doing this and you're lucky to have each other." Right at that moment, I felt like such a fool for every argument that Rob and I have had since Calvin's diagnosis.

She left to grab a coffee and handed Lake off to our interpreter. While she was gone, I expressed my admiration for her and all that she goes through. Our interpreter simply said, "She's had a lot of grieving to do." I tried to imagine what it would be like, to hand your baby over to a Doctor who was supposed to make him whole again and then find out that his life had become infinitely harder. I could only imagine a small part of the enormous pain she must have been through. Then the fact that she has to endure this alone hit me and I started to cry.

I have no one to be angry at for Calvin's deafness. It's no one's fault. There isn't a machine or Doctor that failed him. Rob and I knew that his hearing loss could mean that there was a higher risk of having a baby with hearing loss, but we are still left with no one to blame, sue or yell at. Here was this mother who had every reason in the world to be hateful and bitter, and instead, she was so sweet and supporting us.

When we were getting ready to leave, I asked her if I could give her my number and offered to help in any way that I could. I don't know what prompted me to do it, and it sounded really weak and lame. How can I help her when I am at a total loss to manage everything already? She was so gracious and I think she understood what I was too embarrassed to say out loud. She said, "Maybe we can get the boys together someday. Lake loves babies, and it's hard to invite other kids over. It's hard to see him around kids who can do everything."

That's what I was offering her. A chance to be around another kid who can't do everything either. Calvin stands a better chance of doing more than Lake can, but at this stage, developmentally, they are on equal ground and Calvin made Lake smile the most beautiful smile I've ever seen.

 I thought I had gone entirely through the grieving process, and apparently... I hadn't. I had no way of anticipating exactly how difficult it would be to navigate my way through this. For as much as I want to be OK every single day, I realize now that it's unrealistic to put that expectation on myself. There are just times when I need to cry. After Misty and Lake left, I went to the bathroom and cried. I cried for her, for her son, for my son, my husband, and for all the families I know who have to go through profoundly difficult challenges, hearing related or not.

As we were driving away, Rob and I were amazed by what we had just experienced. We don't have the worst case out there, and we have each other. It's hard, we're tired, ill-equipped, and sometimes we take our frustrations out on each other, but we're managing. We have love, we have support, and at every turn I've found something to inspire me to be better than I was before. I hope Misty does call me. The world needs more parents like her and I think that even though I have four kids and my oldest is a teenager, I have a lot to learn from her.

So that's how they're made...

Last week we had another appointment with our Audiologist, Kerri. I have a feeling we're going to be getting pretty close with her so it's a good thing that I like her. Yesterday's appointment was to repeat the three tests that were done when we were given the diagnosis of profoundly deaf, and they confirmed the initial results. Additionally though, she conducted a test called the ASSR (Auditory steady state response ). With this test we were actually able to find that Calvin has a tiny amount of hearing in his right ear. This is great news! Any hearing at all is better than none. It isn't enough to help with speech or language, nor is it enough that he can hear us,  but it's enough to help with stimulaing his nerves in preparation for an implant.

Yesterday we were also able to make the molds for what will become the inner part of his hearing aids. I didn't know how it was done, and thought it was interesting, as well as amazing that there is technology now that can help my baby. We selected his first pair of  "ears" and they'll be here on the 19th. We're used to hearing aids as Rob wears them in both ears, but Calvins are going to have to be programmed very loud in order to help at all. I am excited and curious about them. I am sure that eventually it will become second nature to put them in, take care of them and try to keep them in a very wiggly little baby's ear.

Here are some images of the process we went through, first a little piece of foam with a string attached is inserted into his ear. He didn't like it very much, but was such a good baby about it all. Then a silicon was injected into his ear and allowed to dry. 

I'm still so impressed that he slept through it all! The final result is on the right. We will have to repeat this process every two weeks because of how rapidly he will grow and his ears will change.

Profoundly Happy

There is a word that has been bouncing around in my head for two weeks now... "Profound". It's not like I haven't heard it before, but the context in which it was used recently was probably the hardest thing I've ever heard in my life, and I have been desperately trying since then to wrap my mind and my heart around the significance of it all.

Monday, March 19th was our first wedding anniversary. It has been a whirlwind of a first year for Rob and I. We got married in March, bought a new house in April, I started a new job in May, and we found out in June that I was pregnant. We have had so many blessings come our way, but I would be a liar if I said there weren't challenges as well. Rob has never had children before now, and I can only try to understand how overwhelming it must be to get three at once, plus an infant in under 12 months. I had been a single mom for a long time, and I have been very used to doing things my way, when I want and how I want. The learning curve has been steep, and we're trying to muddle our way through as best as we can. Fortunately, I kinda like the guy, and I'm pretty sure he likes me too. Our love and our family is a work in progress. When things don't go perfectly, we can always say, "We'll try again tomorrow."

Monday March 19th, I had also scheduled a follow up hearing test for our new baby boy, Calvin. He had not passed the previous two that were administered in the hospital when he was born. I had a lot of mixed feelings about it; but mostly I believed it wouldn't be a big deal. His doctor had reassured me that many babies do not pass their first screenings, primarily because our hearing isn't completely developed at birth. He did mention that because of my husband's hearing loss, we were at a higher risk for Calvin having some hearing loss; but it still didn't register to me that it was a possibility. I don't think I wanted it to register. Calvin was not responding to my voice like a 6 week old baby should. He had never been startled by loud noises at all. Turning on the lights was more likely to wake him up than anyone yelling was. In spite of knowing all of this, I desperately hung on to the idea that he was "probably fine".

When we met with the audiologist at the Elk's Hearing and Balance Clinic, something about the way she interacted with me raised my awareness a little. She wasn't dismissing anything. She didn't give me the "probably fine" mantra that everyone else had said. She had seen his two previous test results, and I am certain that she was more aware of what the outcome would be than I could have predicted.

Calvin needed to be asleep for the testing, so while she hooked electrodes up to his head and behind his ear, I fed him and prayed silently. This was suddenly so real to me and I wasn't ready yet. I wanted to cancel the appointment and come back later now that I was no longer in denial.

When Calvin was far enough asleep, the audiologist came back into the room and started the testing. For the entire duration of the three tests, I tried so hard to make eye contact with her, to get some sign of reassurance, but I could not see her face and maybe that was a good thing. Rob was able to see the profile of  her face, and later he commented that as the test progressed, her countenance changed dramatically.

The time came for her to give us the results, and when she walked in the room, I think I was almost willing her to say, "Ok, Calvin looks great! You're good to go now." Instead, she sat down across from me, and very calmly said, "After reviewing the results, the tests would indicate that there is no presence of hearing in either ear for Calvin. Because of this, we would diagnose him as profoundly deaf".

Rob's eyes widened and he said, "When you say no hearing, does that mean he can hear nothing?"
"Nothing." She responded.

I think my soul sank at that moment. It wasn't my heart that sank, that felt like it was on fire. There was pure panic in my chest. I couldn't even see straight, and I was blinded by my tears. They were hot and they hurt. I had never been so afraid in my life. I don't know why my first reaction was fear, but it was. I looked at Rob as his head fell against the wall and tears streamed down his face. He was crushed.

"He can't hear anything? " I asked. I had to make sure I understood her correctly.
"No" she said.
"Not even my voice?"
"No" She said again. "But he can feel you when you talk, so please keep talking to him."

The rest of the appointment was kind of a blur. She laid out the advances that have been made for the hearing impaired, and gave us hope that at a year old, Calvin will be a candidate for a cochlear implant. Until then, he will wear hearing aids. We don't know yet how much, if at all, this will help him hear. More than likely, the hearing aids will only stimulate his nerves and prevent them from atrophying. She told us that she was referring us to an Otolaryngologist and that he would be fitted for his first pair of hearing aids in two weeks. I didn't even know that they made hearing aids that small.

We left the clinic and I called my sister. She cried and grieved with me and for that I'm thankful. Right at that moment I didn't want or need to hear that it was going to be OK, because I had no proof that it would be. I needed to just cry, and she let me.

We went home and told the kids, and grieved together as a family. We tried as best as we could to help the kids visualize what the rest of their baby brother's life would be like. The more they know, the more comforted they'll be. We explained that although he can't hear us, he can feel us, and that we needed to keep talking to him and to make sure that he knew we loved him.

I went to bed that night feeling more inadequate as a mother than I had ever felt in my life. Just before his 15th birthday, my oldest son, Aaron, was diagnosed with Asperger's syndrome. My second son Zack struggles with a mood disorder, and now my infant son is deaf. It took a lot of effort to not wonder, "why me?" or "what more could one mother be asked to endure in one life?"

The very next day poor Calvin was hospitalized for cellulitis on his face. It's a nasty bacterial infection that can be very dangerous for infants. In order to be sure that the infection had not spread to his spinal fluid, which would cause meningitis, a spinal tap was necessary. I wish I had been strong enough to be in the room while the doctors performed the spinal tap, but I wasn't. I will forever be grateful that my husband was though. I came in the room just as they were pulling the needle out of my baby's little back and that was enough.

Late that night, Calvin was crying like I had never heard him cry. He's not a fussy baby, and I can usually soothe him pretty easily. But this night he was in pain and I could tell. Nothing I was doing could calm him. It's moments like this that his deafness is so completely unfair. My baby was in pain, and he couldn't even hear me sing to him.  I started to cry and pray. I don't even know what I was praying for really, but soon enough it was as if someone was standing next to me and I heard,"Put your lips on his cheek next to his ear and hum." I did, and he stopped crying. By the light of one of the monitors that he was hooked up to, I could see the look on his face and it was so peaceful. I felt that peace too, and was finally not afraid anymore. I know now that as a mother, I am able to receive the inspiration I need to raise my children to be healthy and strong.

Two days later we were able to take Calvin home. I have no doubt that this was the result of so many prayers on our behalf. We are nothing if not blessed with wonderful families and friends.
That night while I was feeding him, I looked down at him and when we made eye contact, he smiled his first big, wide grin. His eyes lit up and milk ran down his chin and all over me. I honestly felt like he was trying to tell me, "I'm O.K. Mom!", and that was the moment  I realized something so profound that it changed the way I will think about my son forever. He doesn't have to hear to be happy.

I realize now that I can feel sorry for myself, get angry with God or mope around but that's not going to help Calvin... or any of us. He is entitled to the fullest life imaginable, and I am fortunate enough to be his mom. Seeing someone smile or laugh will teach him more than anything else that I can think of. What he can't hear with words, I can make up for in smiles and hugs and kisses.

I know that I am not left alone to struggle my way through this life, nor are my children. I have certainly come full circle with my faith and I can honestly say that I am loved infinitely more than I can understand and certainly more than I believe I deserve.

I also know that sometimes we are prepared for what we will face later in life, even if we are completely oblivious to it. When I was growing up in Idaho Falls, the ward that I attended was the regional deaf ward. Deaf families from all over southern Idaho would come to our ward every Sunday, even if it was a long distance to travel. I think the one thing that I loved the most about church as a child was the interpreters in our ward. They made every word that was spoken come alive. The music was more beautiful when there was action with the lyrics and I was never bored when I was watching them. I loved the people that I knew who were deaf, and I remember always having a special feeling of reverence and awe for them.

I did not know then that by attending church with so many families who were affected by hearing loss I was being prepared to be Calvin's mother and Rob's wife. I'm also certain that Rob didn't know that by being deaf he was being prepared to raise a child who is deaf.  He can completely understand the frustration that Calvin is sure to experience, far more than anyone else could. He can teach and guide his son in ways that I cannot. I am so thankful that I have a wonderful husband who is an example of how to be a good man to not only Calvin but Aaron and Zack. Rob has never felt sorry for himself or used his disability as an excuse, and I know he will teach my sons the same.

Rob and I have decided to start this blog in response to the question that so many family members and friends who have asked, "What can I do to help?"

 Calvin will be fitted for his hearing aids this week, and we pray that eventually he will be eligible for a cochlear implant. In the mean time, we will need to learn to communicate with him, so we as a family have decided to learn American Sign Language. We will also be posting weekly videos of what we learn so that those of you who choose to can learn along with us. Learning to communicate not only with my son, but anyone else who deals with hearing loss is the greatest gift anyone could give my family right now.  I would love to post what my kids have learned this week, but I didn't put any restraints on what words they searched. Aaron knows the sign for "bacon" and "bomb", and Zack learned "bull crap" and "zebra".  Next week will be more structured, I promise.

Fortunately, I have been in touch with a very supportive friend who also has a child with hearing loss. She reassured me that the emotional drain of this will ease and that things will come to a new normal. I've also reconnected with a family friend who is an educator for deaf children and she has been a wonderful resource and given me a very clear road map to help navigate the services available and interventions needed. Some other dear friends bought our first set of sign language DVD's for us. We are blessed in deed to have the friends and family that we do.

We all come into this life and do the best that we can for better or worse with what we've been given. We all create an identity for ourselves by the way we live and the way we love. I can look at my son and think, "profoundly deaf" or I can look at him and think, "profoundly happy". I choose the latter, and will do my best to help him smile every day.