Look who's all better-ish

Update on Calvin.... So now that we have a better idea of what wasn't happening with little man, we're tentatively saying he seems to be doing much better (other than he stopped sleeping through the night, oy!) We still don't know what's at the root of his mystery illness though. It was shocking to watch him get so sick, so fast, but every test result came back negative. We were also afraid that he could be having a reaction to his cochlear implant. This of course, was our worst nightmare and the reason I didn't elaborate much. It's a heavy thing to decide to do that for your child in the first place. It's a deeply personal decision and shouldn't be made lightly. There's no one that can tell you 100% if it's right or wrong, so you go into it with a certain level of ambiguity anyway, and then to think that what we had done was hurting him.... That was unbearable. (So please, no judging here). 

Fortunately though, he has a wonderful neurotologist who was able to see him right away. At first he validated the fear that it could be his implant. At least he was honest with us. It made my stomach flip. He said it was possible that he could have had a viral infection that had somehow done further damage to his ear, or that the device was malfunctioning. Fortunately I was smart enough to have taken his cat scan from the hospital with me, and while we waited for him to look at them, we saw Calvin's old Audiologist. She tested all components of his implant and although she didn't get any NRT readings, she could not detect any abnormal signals. She put Calvin in the sound booth and he was responding well (as well as a 3 year old with limited attention can). 

We went home and waited to hear from Dr. Williamson. He called a few days later and said that as far as he could see, Calvin's implant was just fine. It was in place, he couldn't see any further damage to his inner ear or nerve and that he should be ok. 

We were so relieved to hear this, but still so perplexed. It may not have been our "worst case scenario" but we still have no idea what it was. 

Fortunately, he seems to be just fine now. Like I said, he stopped sleeping through the night which might be the death of me, and has disrupted everything, but we're doing well otherwise. We'll continue to keep an eye on him and report any new crazy symptoms to his Dr, and just keep on truckin.

When Calvin was diagnosed as Profoundly Deaf and got very sick the next day, it's not really a secret but I kind of fell apart. I tried on some levels to keep this normal but I really didn't do very well. I got depressed, I gained a LOT of weight, I pushed people out of my life and I made a mess out of my career. There are opportunities that I won't ever get back, and people I disappointed who may never feel the same about me again. I tried to do my best but really felt so lost and directionless. Calvin wasn't the only challenge we had at that time. We were newly weds with a blended family, one kiddo with some very serious issues, and a sick baby.  I wish I had done so much of that time differently. I can't go back and change it though, so I'm learning to deal with regret and move on. 

The good that did come from all of that is that I learned how much I never want to be that lost again. I have learned that I don't have to understand every hard thing we face to accept that I can rise above it. It made me want to fight and try and do better on this go round, and I'm so, so thankful for that. I have met some amazing people who have far bigger trials than we do. Like my new friend Trisha. Both of her boys lost their hearing at the same time. Did I mention this was two weeks after she had a baby?!? I'm sure she has struggled, but I've never seen it. I've seen her gather her family around her and move forward with strength and faith. I admire her more than she knows. And because I know now how bad it feels to be lost, and she has set the example of how to do it better (by "it" I mean this whole special needs parent thing) I know now that I CAN do it better. 

In the grand scheme of things, this wasn't as huge as it could have been. It might still mean something bigger is going on, but for now we're good. So good. 

We're pretty lucky to have the people in our lives that we do. We saw an outpouring of love and support for Calvin and it was awesome. Tonight when I came home from a special moms night out with some very cool mamas, I was shocked to see what looked like an impromptu birthday party going on in the living room. It was actually a huge "good vibes" care package for Calvin from everyone who works with Rob. It was incredibly sweet, and confirmed that moving to Texas might not have been as horrible as I have believed it to be. He works for some very cool people, and I'm grateful for their support. 

I am beginning to finally understand that this kiddo will always keep us on our toes, but the better news is that I finally feel like we're able to rise to the occasion and do it better. 

ARRRGGG Matey!

Highlight of my week...Calvin and I read his book "Puff the Magic Dragon" that was given to him by our sweet friend Katharine for his birthday. It's now one of his FAVORITES. In one of the illustrations, there are pirates in a boat. When we got to the pirate scene, I taught Calvin the sign for Pirate (one hand covering one eye) we then added a "hook" to it to personalize our sign, and he thought it was hysterical! The other day Calvin was in time out for being a normal two year old (hitting when he was frustrated) and when all was quiet I sneaked in the room and caught him reading the book... and signing it to himself! "Boat" "Dragon" "Stars" "Boy" and  'PIRATE". It melted my heart to see this! I called Rob to come peek at him too and luckily he  was able to snap a picture of it.

 Tonight when I read it to him again, he INSISTED that I get my hook out for the Pirate part... and he GROWLED like a pirate! He makes a lot of grunting and crazy sounds, but this was on purpose.. and adorable. We pretended to be Pirates for a little and then he finally went to bed (kicking and screaming of course) but yay for early literacy! And and early Piracy!

Be Mine!

Happy Valentines Day!! 

      Last night my oldest son was kinda bummed and lamenting the fact that he doesn't have a girlfriend. I remembered the pain of being younger, liking someone and not having those feeling returned.. and winced. I remembered that it hurts.. Like tearing off a toenail. So I tried to be sensitive when I asked him if he still had people in his life that loved him, and he said yes, that he did. So I asked him why it has to be a romantic day? He agreed that it didn't really have to be. I thought a little more about that this morning and decided that if it didn't have to be a day that's only for the people you're intimately, romantically involved with, then I could try to do a few things differently today.
     I went to Home Depot this morning and instead of staying silent in the line at the mill work counter, I struck up a conversation with the guy next to me. He left smiling and so did I. At the check out counter, I told the woman helping me that she had beautiful hair. She had been scowling and looking down, until I complimented her, then we both smiled, but she was beaming. I chatted with the guy selling hot dogs out front ( by the way, as an amateur hot dog connoisseur, I recommend Home Depot dogs over Sam's Club. Twice the price, but they're grilled man. Doesn't get better than that!) When the guy in line behind me joined in,  I found out that his wife is deaf and they have been struggling to find some resources for affordable sign language classes for their family, and a video phone for their home. I was able to help him out, and again, we all left smiling. 

       To be honest, I was a little grumpy when I woke up today and nervous that it was going to be a bad day.  I was thinking this morning how its so much easier to show love when we feel loved to start with. Sometimes though, if we reverse the thinking, more love comes back to us than first anticipated.. It can sometimes take a great amount of effort to love some people, and some simply draw it out of us effortlessly. It took nothing from me at all to give to these people, not even extra time. Sharing a little happiness and affection turned everything around though and made a world of difference; more for me than them. I think that maybe I need to try this a little more often, starting with my own family. I am learning that service is the key with my family. If I want them to be less selfish, more generous, to speak kinder and more freely love each other.. then I must be willing to model that for them. I can't think of a better day to put a little more effort into that than today. 

     On a less soap boxy note... I started this blog with the hopes of being able to educate a little about what I've learned along our journey; so I wanted to share the sweetest video from ASL Nook, just in time for today!!! Here is short video that will help you learn some signs to help you tell your family how much you love them (and some cute crafts too!) 

And of course I can't show this video without showing one of Calvin doing his best Valentines signs too! 

I hope you're all having a lovely day with your friends and family!  

Birthday Blues

Yesterday was little man's second birthday and I am sitting here in disbelief that he is already two. Where in the world did the time go? It seems like just yesterday I was staring at a positive pregnancy test in utter shock and disbelief and now I have a very rambunctious, funny, brave and determined toddler running around my house.
      Looking back on the last two years I'm incredibly proud of where Calvin is now. And incredibly overwhelmed. I had no clue what would be coming to us in that little bundle, and now I'm amazed at everything we've done. He's signing more and more, he's learning how to listen and respond to sound. He will already attach the sign "more" to the word "more" without me having to sign it first. Just today when I was doing a little speech therapy with him, I asked him to listen and he responded by raising a toy to his ear- that is his sign that he's listening. Again, he did this without me having to sign "listen".  This is huge. His hearing age is so young still, and yet he's already understanding words and associating meaning.
       I know that as Calvin continues to grow, there will be plenty of growing pains. We've experienced a few lately that left me completely baffled and feeling very alone. When we moved to Texas I had joined a play group for Moms of what I thought was supposed to be toddlers. It ended up having a wide range of babies from under 6 months to Calvin who was the oldest at 18 months old. I was a little concerned but the women were so nice and it was so wonderful to be getting to know people again.
     As the group progressed and there were more activities, I started to sense that something was amiss. We weren't clicking with everyone like I hoped we would and I felt like we were being avoided. Calvin got very sick a few more times, and with more trips to the hospital we had missed a lot of the play dates, so I just chalked it up to not being there often enough, or that I was being too insecure or trying too hard.
     Then earlier this month, we were finally able to make it to a play date. The babies were having so much fun and Calvin was just having the time of his life. Unfortunately, another mom and I had  our backs turned for two seconds and Calvin pushed her little guy over. I did everything I could to help Calvin understand what was happening and why the baby was crying and to let him know that was not OK. The other baby calmed down and resumed playing. I assumed that everything was going to be fine. When I got home I sent the other mom a message on Facebook apologizing again and telling her I hoped her little guy was well.
        The response I got was nothing if not shocking. I was so taken by surprise. She let me know that she was very upset over what had happened and that she was reluctant to bring her son to more play dates if Calvin was there. Additionally, she shared with me that other mothers were uncomfortable with him as well.
      I was so sad to read her words. I really truly had no clue that they had all felt this way about us. I wanted to fire off one of my trademark responses but I decided to cool things a little and wait. Well, the next morning when I woke up, there was an even more upsetting message for me. It was from the woman who had started the group and invited us to join. She told me that the little boy who had been hurt at the play date had suffered a concussion and that we were no longer welcome in the play group. She too let me know that the other mothers were not wanting us in the group. She had already canceled Calvin's Birthday event that I created and deleted me as a member of the group.
       Again I was shocked. First I was horrified that he had been hurt that badly. I had no clue. He seemed so fine when we left the play date. His mom even posted later on Facebook that she was taking him to the park. I was completely beside myself that we were going through this. On one hand I was furious. Seriously, THEY ARE BABIES! Accidents happen so often. It could have been any one's kiddo. It just happened to be Calvin who instigated it. On the other hand, I was completely devastated to be so fundamentally rejected. I understood the message they were sending very loud and clear: "you're not a good enough mother." They had watched Calvin going through a developmental stage before their children did because he's older, and had interpreted my patience with it to mean that I didn't care if their kiddos got roughed up. I suddenly understood why things weren't clicking.
      I cried for most of the morning and begged Rob to let me take Calvin back to Idaho for a birthday party so that he could be around the people who truly know and love him. We have no family in Texas, it's been incredibly difficult to make friends (obviously) and I wanted nothing more than to just pack up and go. I wanted to get as far away from here and the rejection and hurt that I was feeling as I could.
      I ended up staying because unfortunately it was just too expensive to go on that short of notice. The days that followed were very sad to say the least. I wish I had a little thicker skin and that I could let things like this roll off. I can't though. I take it very personal and unfortunately, that was the only was it could be taken. Being a mother is such a huge part of my being and the way I relate to the world. WAY more than I ever planned on letting it be. I guess I also struggle with this so much because dammit, for once I thought I was getting it right. I have RARELY laid my head down at night feeling like a successful parent with my other three. I felt when I had Calvin though that with the age gap and how much I had grown as a person, I was being given a second chance to do it over and do it right. I have worked so hard to do the best for Calvin that I possibly can. I actually play with him. That's something I never knew I was supposed to do with my oldest son. I'm ashamed to say it but it's true. I was so young and immature when I had him that I had NO CLUE of what it meant to help him reach developmental mile stones. It's like I just assumed it would naturally happen. Thank God that in a lot of ways, it does. And it's also a blessing that he's so incredibly intelligent. After he was diagnosed with asberger's though, there's NEVER, EVER been a day when I haven't thought it was my fault.I can intellectualize that and realize in my head that it isn't, but tell that to my guilty heart. And yet with Calvin, I felt like I had caught on. That I was finally able to rise to the occasion. Even in spite of his hearing loss and other health issues, I thought I was doing alright. We've over come so much, and worked so hard to get to where we are. I'm teaching him and helping him to learn and understand and speak and hear and sign and live and love and grow. And yet in a few messages from some unsympathetic women, I was told, "No, you're not even close to being enough. You're an awful mom."
          I wonder how many other women actually realize how detrimental "mom shaming" is. I hadn't even thought about it until this happened and didn't fully recognize it for what it was until I watched The Odd Life of Timothy Green the other night. I watched two parents desperately struggle to overcome their own sense of awkwardness, inadequacy and jealousy of other parents. They had for years been put down by their friends, families and employers in a very subtle, yet incredibly hurtful ways, usually by attacking them as parents. I realized while watching this movie that the "super parent" persona is disgusting. And completely false. THERE ARE NO SUPER PARENTS! We're ALL just dumb schmucks trying our best with what we've been given. Which, when you think about it, is a damn heavy load. I mean, just making sure they make it to age 5 without major trauma of one sort or another is getting pretty hard to do. Then managing to make it to 18 is a feat not for the faint of heart. I pray that I have never made another mother feel inferior for doing her best and loving her kids with all she's got because really, that is all I have to offer my children. I could never look down on anyone for doing at least that much. There will come a day in every child's life when they will make their parents look and or feel like an ass. I guarantee it. At some point, their babies will be toddlers and they will hit or kick or punch or bite another kid and they will feel just as mortified as I did.
      I can say that some good came of it though. One woman, out of 15, reached out to me and let me know that she wanted to continue a friendship with us and that she understood Calvin's differences and was angry about what had happened. That was a measure of grace right then, and something we desperately needed. We have since joined up at the Zoo and had such a great time. I will continue to nurture and cultivate that friendship because let's face it mama's... we got to band together. We're on the same team! It's not your kids against mine,  or mine are better than yours (mine might actually be prettier than yours though. I'm just sayin') Seriously though, this is heavy stuff that we do, and we need all the help we can get.
    In the final message I got from this little boy's mother, she said something to the effect that at the end of the day we're both mothers and that we have to protect our children. It made me sad when I read it the first time, and I offered up an apology that frankly, I'm embarrassed and ashamed of now. I let my dismay at being so horribly judged push me that much closer to wanting  and needing to be accepted. In hindsight now, a comment like that is exactly what I mean by "mom shaming." Again, I repeat, THEY ARE BABIES!! I do completely and totally feel awful that he was hurt. I would probably be upset and frustrated as well. However, I understand that you cannot take adult characteristics and project them onto a child who is simply too young to know better. He's starting, but is no where near old enough, to comprehend the impact of his actions. Therefore, the offense lays squarely on my shoulders and you know what, if it means I shelter my son from ignorance and dislike, fine. SO be it. THAT is what it means to protect your child.
    The only thing I regret about all of this is that they have failed to understand what a completely beautiful child Calvin is. That is an opportunity I want the entire world to have.

Brand New Kicks!

Today I took Calvin to get his braces fitted for his feet. This has been a little bit of a work in progress so I'm glad that they're here and that we can take some big steps in the right direction!
        It wasn't until we moved to Texas that we were told he had low muscle tone, but I had suspected that something was wrong for a long time. He wasn't sitting up on his own until he was almost 11 months, and he wasn't walking independently until almost 20 months. When he did start walking, it was very hard for him and he could only manage several very fast, clumsy steps at a time, and then he would fall down. His gait was awkward and he honestly looked like he was drunk. This is kind of normal for new walkers, but after a while it should go away and it never did. When we lived in Boise I had mentioned several times to our physical therapist that I was concerned about his lack of balance, and how delayed he was with sitting and walking, but she brushed it off and said his lack of balance and coordination was probably due to his ears. It still didn't sounds right to me, but what did I know? His inner ears are completely deformed, so I didn't doubt it.
      After we moved to Texas and things finally calmed down, Calvin wasn't walking any better. I was a little frustrated but we had so many other things to worry about that it didn't take a priority for me. Then I got him enrolled in the Early Childhood Intervention Program here in Texas. It's very similar to the Infant and Toddler Program for the state of Idaho. They both service children with developmental delays due to Blindness, Deafness, and other disabilities.
       On the first day of our assessment, the intake coordinator came with a physical therapist. I was really annoyed by this. His need for the program wasn't because of a physical delay or deformity, but because of his hearing loss. I didn't think that a physical therapist would be able to accurately assess his hearing and need for intervention.
       It turned out that George is a good man and competent ECI Team member. Calvin really likes him and especially his backpack, where he always hides a sucker for him to find. On the first visit, George noticed Calvin's drunken sailor gait within 5 minutes and went to work on him. He told me that Calvin has very low muscle tone and that it's actually affecting his bone development. His feet and ankles were turned in so far he was walking on the outside edge of his big toes and that's about it. I told him he had poor balance because of his ears, and he very gently told me that no, that's not why he had poor balance. He laid Calvin on his back and lifted his legs up and let them fall. His legs fell apart in a perfect split with his ankles to the floor and it didn't even phase Calvin. He said he has poor balance and walking skills because his muscles aren't able to communicate that he's falling, or not supported.
      He also lifted up Calvin's shirt and asked if I had ever noticed that his rib cage flared out. I said YES! I had pointed that out several times to anyone who would listen and everyone said, "it's probably fine. It will change as he grows." What's happening is that his abdominal muscles aren't strong enough to hold his rib cage in a nice contour, so they're flaring out. The treatment for this is that we have to tape those muscles in position to support his rib cage until they are strong enough to do the job on their own. He does NOT like the tape, not even if I let him scribble on it (that usually works for band aids).
         So, we went and got fitted for braces, we tape him up and we work hard! We do physical therapy every day, in addition to signing and speech therapy. It makes for a busy day and a tired baby. It's a challenge to continue to find ways to make it fun and seem like play, but Calvin is usually a good sport about it. I was so excited that we were able to get his braces in CUBS gear!! Maybe his next set will be the Saints? Either way, watch out! He's already busy enough. When those braces come off he's going to be running faster than I can catch him!

Speechless

Today was Calvin's first Speech Therapy session since his processor was replaced. Calvin has previously had therapy, but due to moving, my work schedule and implant issues, it has been spotty at best. Now that everything has calmed down, we are hitting it hard. Twice a week we are in clinic at The Speech Emporium in Cypress ( I hate the name of that place, it sounds so cheap and does not at all reflect the level of professionalism that we are given).

Because of the inconsistency that we've had before, I didn't expect a big response from Calvin today. However, what we got left me speechless.

The first amazing thing that happened is that when we were all quiet for a moment, Calvin turned and looked at the clock and then pointed to it. I hadn't even noticed it ticking, but he did. I was so surprised that he could hear something so quiet. It was such a good affirmation that his implant really is working and that he can hear again.

As we worked with the speech therapist, we started with his ling sounds. Those are simple sounds like 'oo' 'aahh' 'buh buh buh' 'eeee' and 'mmmmm'. Usually Miss Jennifer will hold a toy to Calvin's ear and motion that he needs to listen. She covers her mouth with a hand, and then when she has made the sound,  and he hears it, he can drop the toy in the bucket. He hasn't really alerted to any sounds made by human voice yet, so I wasn't expecting a response. But when she made the 'ooo' sound, not only did Calvin's face light up, but he dropped the toy in the bucket and said, "ooo". That is the FIRST TIME he has ever made a sound other than "mum mum mum mum" (That's an instictive sound. He didn't make it because it had any meaning to it, it was because he can feel the vibrations on his lips). I was so taken aback and surprised that I started crying. I didn't expect a response at all. Usually I take pictures or video tape his important sessions, but I didn't expect him to start articulating sound today- especially after having such a long break getting his implant working again.

It sounds like such a little thing to hear a kiddo say "ooo" but to me it's priceless. Calvin's deaf voice is becoming pretty pronounced. While his implant wasn't working, he started making more instinctive, gutteral sounds. Some of them were more gurgling, and some are just hard to describe. Usually I laugh at them with him because they sound cute, and they're fun for him to make. They're sounds that feel good on his lips and tickle his throat. Then there are his sounds of frustration and anger. Usually it's just a VERY loud "uh uh uh uh uh" sound over and over again. When he can't find the sign language to tell me what he wants, or no matter what I sign back to him or show him or try to help him, and none of it satisfies him- this is the sound he makes. I've accepted that this is a part of him, and for the most part I can handle it. But there are times when it really does break my heart. It makes me sad when I hear other kiddos his age who are starting to voice. It makes me sad when were in public and he's mad and makes that sound and every parent within ear shot gives me a horrible look. It makes me sad when I am tired, and get frustrated with him for it. It's not his fault and it makes me feel terrible for being frustrated, but it's our reality.

I am grateful for the efforts that we've made to learn ASL. Even though we are working so hard to help Calvin use hearing and speech, I never want him to be in an environment where he doesn't have a voice, weather its spoken or visual language. I read a study once that stated the statistics of Deaf children who were sexually abused. It was staggering. I never want Calvin to feel like he can't tell someone if he's being hurt, no matter what environment he is in. I will do whatever it takes to give him a voice, and the ability to advocate for himself. I prefer to be the one who is left speechless at what a wonder this little man is.

Two steps forward, two steps back...

It's been a while since I've posted anything here.. And with good reason. We've been BUSY! We finished remodeling our house, sold it, packed it up and moved to Houston Texas. In some ways, I'm very glad that we're here. In others, it's very, very hard. Not all of my kids have made the transition well and it's been a struggle for some. I'll talk more about that later though when I find a way to articulate what we've gone through. 

    Yesterday Calvin had a pretty important Dr. appointment. His Cochlear implant has malfunctioned and we're not sure why. It started working sporadically at the end of August and by the end of September, not at all. I started with our audiologist and she tested the external part to make sure that it was ok, which it was. I was hoping that the problem could easily be fixed, but no. 

     It took some time and some effort and some tears but we finally got in to see a new Neurotologist here at Texas Children's hospital. This is the area where I start to miss Idaho so much. We had such an amazing team working with Calvin. True, Dr. Shelton was in Utah, but everyone that had already treated Calvin had a special place in their heart for him and really never made us feel inconvenienced by caring for him. That's not the case down here. His name on the schedule does not register any sense of excitement or joy for any practitioner down here. I feel very much as though he's just another patient. I miss the people who loved and tenderly cared for my baby when we were at our most vulnerable. They cried with us, and empathized with us, and I miss that sense of support and compassion. 

    I guess now the only thing to do is grow some pretty damn thick skin because everything I've seen about being here has led me to believe that I'm going to need it. 

     At our appointment yesterday I did warm up to our Surgeon, a little. When all this came down the pipes I put in a call to Dr. Shelton's office and was very touched by the fact that he took time out of his day to call us from home on a Saturday. He recommended our new Dr. and said that he knew him well. He didn't disappoint that recommendation. Dr. Williamson was warm and friendly, and concerned about the lack of attention his staff had given Calvin's issue. The crux of the situation is that it only takes 24 hours of silence for a kiddo to start to forget sound. With the amount if time that has already passed, Calvin has likely forgotten everything he learned and by the time his implant has been repaired, we will be starting at square one. He knew that, and I knew that, but I doubt his staff really gave a darn. 

   At any rate, we have some more investigating to do before we decide the next steps. Calvin will have another CT scan next week, and will have testing on his implant done by a rep from the Cochlear manufacturer to ensure that it isn't a hardware malfunction. This would require replacing the implant and would be a big deal. Let's pray that this isn't the case. In the mean time I am gathering as much of his medical history as I can from everyone who has ever treated him.

     I started this blog with the hopes of educating and helping other parents. If I have any advice to give at all, it is make frequent request for your children's medical records from everyone who has treated them. They're typically available 2-3 weeks after your kiddo was last seen. Put them in a binder and take it with you to every appointment. Also,  take notes at EVERY appointment. Sometimes little things turn into a big deal and being clear with your understanding is essential to helping the physician's determine the best treatment, and it saves time and possible repeat appointments. Ask for the business card of every Dr. and nurse who takes care of your kiddo. If you have a complaint, you'll have their information handy. More importantly, if you want to thank them or let them know they're appreciated, it's easy to remember who they are. 

    I'm not excited about repeating his surgery, and I'm disappointed that this has happened. It definitely feels like one step forward, one step backward. Just when we make progress in one area, we lose so much ground in another.  I understand that it's a mechanical device and that for every 100 units made, a certain percentage are going to fail. I would never wish it to happen to another kiddo, but I definitely wish it wasn't Calvin. I miss seeing him smile when turn on his implant and say  ,"Good Morning Calvin!"  

       I don't feel like his interruption to sound has interrupted our love or our bond though. My signing has improved a lot from relying on it solely to communicate with him, and he will finally watch and pay attention when I'm trying to sign more than a few words to him. His signing has skyrocketed and he is still the same profoundly happy baby he's always been, hearing or not. For that I'm grateful.