Heaven & Butterflies

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Mitch was  around 5 years old when we had a death in the family. We were living on the farm where death is a bit more normal in our daily lives than for city families.  Cows die; calves die more often, barn cats get sick and die all the time. And Mitch loves animals.

How do you explain Heaven to a deaf 5-year-old with no concept of death, or to any child really. Certain concepts seem more difficult to get across to deaf children; they are not exposed daily as hearing kids.  They don’t overhear other conversations while busy playing nearby as the rest of the family is talking.

Deaf children are really isolated unless  signed directly to or near others who are signing.

This little pony we had gotten from some friends was not doing well and had to be put down. There were some crying kids on the farm that day and our youngest was crying the most.

He knew something was going to happen as I tried to pull him away. But he got a glimpse of the dead pony laying in the field.

Imagine, I told Mitch, this little pony is now running through the grass in Heaven. He is chasing birds and  butterflies through the fields and they keep landing on his nose playing with him. He is so happy now.

Trying to paint a picture for Mitch so he can visualize “Heaven” as a happy place for this pony was not easy. Even though he has never seen this sign before; let alone what it could possible mean, he didn’t ask. No need keeping it from him at this point.

Just the sign for “butterfly” is beautiful enough.  Put your hands flat in front of you, palms up,  then cross you hands one over the other and interlock  your thumbs. Now move your fingers to make your “butterfly” flutter; get animated.  You just signed “Butterfly”. How beautiful is that?

Being deaf, Mitch has a great sense of imagination and visualization. We know that already about him.

Of course we have no idea how that will unfold in his future, and become his future.

Getting his mind off the ordeal by drawing Mitch into the story of the playful butterfly was helping, I think. He is still sobbing  but he is now shaking his head “yes” to let me know he understands, as big tears roll down his cheeks.

We had some big hugs and then he ran off and  found something else to do.

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Cookies, cookies, cookies

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Mitch was about 18 months when we finally had a solid diagnosis of deafness. He has no hearing in his right ear and profound deafness in his left ear. He seldom wears hearing aids, and that’s a whole other story! We chose to use sign language with him and hoped he would pick up bit of lip-reading. Only 10% of speech is visible on the lips so that’s not too promising. He is too profoundly deaf to really expect him to speak, so we think at the time. Its funny looking back knowing how far and well adapted he has become but at that moment that’s what we knew. We went and bought our first sign language book and had it open on the table and studied it daily. Start small and easy we were told, don’t expect anything from him for 6 months or so. But just keep at it and it will come. Sign language is really a fun language to learn, it takes a bit to get the hang of it but at some point it starts to make sense.

Our couch was backed up to the kitchen counter and the kids often liked to stand on the couch to see what I was cooking or baking. About 2 weeks into our  signing adventure I was baking chocolate chip cookies. Of course I had signed “cookie” to Mitch a few times before but not all that much in the last  two weeks. I tried to sign to all the kids all the time, but I talk fast and it is just plain  hard to do it all the time. It’s much easier talking to those who can hear, but I’m trying.  It’s just as or maybe more important for the whole family to learn to sign rather than only Mitch. And I don’t know how that couldn’t happen, they should all pick it up I’m hoping. Maybe a bit harder for his dad since he is not the main one signing to him all day. But anyway on this given day, 2 weeks into learning signing, the smell of chocolate chip cookies is filling the house as I pull another tray from the oven. My little blonde baby who can hardly make get on the couch, climbs up and signs to me; “cookie”- “cookie”. WHAT!!  You know how to sign this already? I couldn’t believe it. Of course he got as many cookies as he wanted and more that day. Today when I bake those cookies I often remember back like it was yesterday, I can see him looking at me with his elbows resting on the counter, leaning over the back of the couch as he does his best signing his first “words”.  He was thirsty for language and ready to “talk”.  From there it just became more and more new signs everyday. It was so cute to watch his first baby signs. Those little pudgy fingers making choppy movements. Too cute. This was a truly good day, we are making progress.

Half Full or Half Empty?

Of course there were times we wanted to have a pity-party about having a deaf child, not often, but it did happen. The sadness of something that never will be, things that we love that he will never have the opportunity to hear, like music, birds chirping. Things, I thought at the time, he would never be able to do; drive a car, go into a store alone and function alone in this big world. The dangers are everywhere for a deaf child. I didn’t really know any deaf kids or families for that matter so this whole deal is new to us. We have no knowledge or experience; what we should or shouldn’t do. But then it’s that way with every parent, but at least your family can guide you along. This is a whole new world for us and we are going to just have to “wing it”. Luckily we have a very happy child, he only knows his life as it is; not as it could have been.

When Mitch was around 6 years old our family was camping at a Washington State Park. That summer they had a few ponies for rent for the kids to ride. We rented a pony, Mitch’s brother  Tyler and sister Tandi didn’t want to ride one but Mitch sure did. He climbed up and of course they only let you ride it in a circle with the owner holding tight. Mitch loved every minute of it and then this little girl and her mom came up to ride a pony. She was blind and as they put her in the saddle her mom described the pony to her. She told her he was black and guided her hand around his mane and head as she petted him. The mom was really good with her and we stood back in awe as the complete opposite was happening right before us from what were experiencing with Mitch. On one pony there was a deaf child and the other pony was a blind child; who has more of disadvantage? Mitch couldn’t hear the clip clop of the hooves, the sounds the pony makes; snorts, whining, the owner talking to the pony. But he could see the color, he knew what black was and what the horse looked like, how tall it was, the coarseness of its hair as it flew up in the wind, the fullness of its mane, its big beautiful eyes and eyelashes. I don’t remember her name but this little girl could hear the sounds; the snorts, the whining, the clip clop, the owner as she guided the pony around the circle. But she has no idea that the color black is very dark, what the actual animal looks like, where she was riding or who is even guiding her. She must have so much trust in those around her. We told Mitch the little girl couldn’t see, and her mom told her  daughter  there was a little boy on the other pony that couldn’t hear. She could hear us talk but not see us sign to Mitch. Her mom explained how we used our hands to talk to him. Mitch was fascinated by her and the fact she couldn’t see and wondered why. And she was just as fascinated about him. He just couldn’t imagine not seeing, and she couldn’t imagine not hearing. They both asked why the other couldn’t hear or see. It was an experience I will never forget; who was better off, who has the advantage, I’m sure eat thought they were the one better off. As most of us enjoy both  sight and sound, our glass is half full, is theirs also half  full or is it half empty. If you asked each one of them today they would probably say they are the lucky one. She was so happy to hear her mom’s voice and the noises around her and Mitch was really happy he could see the things around him.

One day Mitch told his dad he wanted to play Hockey. He was around 10 years old at the time. Hockey! we said, why? Why would you want to do that?  But he was very insistent so  Mitch’s dad and uncle George took him to a Canucks game in Canada one day. He came home even more excited to play. We signed him up at the local arena, bought all his gear. Then we realized that he has never been on the ice, what if he hates it or can’t skate? Too late now we are $500 deep into this thing, he is playing even if he hates it. Well his first day on the ice he came to me and said ” mom, you can’t know the feeling, its like floating” he was hooked, he took to skating like he’d done it for years. I think he played for 6 years then it becomes a whole different game, more serious and by this time he was more interested in water sports. I always say he went from solid to liquid; ice to water. One of his high school friends had a wakeboard boat  and he would go every weekend and found a new love in this sport. He did seem to excel at this sport too. He would go on to be very skilled on the water but in Washington the summers are short and only a couple of months of warm enough weather.Then his friend and family moved back to Colorado.

When Mitch was around 20 he decided to move to Colorado to live with his friend and his family so he could get away from our small town and get back on the wakeboard. I didn’t think he would actually do it as he had never driven a car to the next town let alone across the country. And now he is talking about driving his car pulling a U-Haul trailer with all his motorcycles in it across  5 states to Colorado. He must be nuts! The night before he left he was at our house, I was in absolute disbelief and utter stock. I cried like a baby, worried myself absolutely sick, literally shook with fear and really thought I would never see him again. Had we prepared him enough for the world?  The things he might come in contact with were too much for me to bear. What if he gets lost, or an accident, how can I stop him is all I can think of. He was not afraid. He was totally prepared, with his laptop in the car with his journey all mapped out and every stop tagged. He knew what he was doing and where he was going and why. I was forced to trust him at this point and let go. My husband Andy didn’t seem to have the reservations and fears that I did. He assured me that he would be fine. Well morning came, I had cried all night, and Mitch loaded up his car and drove away with me filling a river with tears. He said to me as he stood in the driveway “do you want me to stay here forever or go live my life?”  I have to say this is the only time that I tried to use the “deaf card”. Mitch! I said, did you forget you’re deaf?  This sent him in a laughing fit and he assured me that he will be fine and that I can stay in constant contact with him along the way. Which I did.  Today as I look back on this, I can be so thankful that his glass was half full and that he was willing to step outside the safe box, go explore the world. He was full of life and wanted to experience so many things and adventures away from the safety net of home. But at that time I gained a few gray hairs and shed a bucket of tears. My husband would remind me that’s how we raised him and not to try to hold him back now. But at this moment I sure regretted the independence we instilled in him.

With Mitch’s success on YouTube and notoriety around the world really gave him even more richness in his life. For some reason it seems to be “cool” that he is deaf. Would he have had the appeal if he was hearing? He found an outlet in this digital world to really explore his talents in videography, bring it to the world and actually make money doing it. We bought him a video camera for high school graduation because he loved photography. We had no idea he had the “eye”. He told me he did when he was younger but I didn’t really believe him.  So many doors have opened for him because he has explored this avenue.

When I travelled to Brussels with Mitch in the summer of 2014, while he was there producing a commercial, just the sounds of the languages around me were fascinating. One day at lunchtime we decided to go to the “Grand Place”  at an outside cafe. I wanted to sit next to this park-like spot because this young lady was there playing a song beautifully by Andrea Bocelli on her flute. When Bocelli sings it just makes me stop everything and listen, it romantically represents Europe to me for some reason.   Mitch asked me why I wanted to sit there and I responded that the music was so beautiful that I wanted to listen to it. He looked at me and shook his head like he understood but really he has no idea how music can speak to your soul. When I returned to work after that trip I teared up as I was telling one of my co-workers how the music that day really touched me, and how much I love music, the sad fact that he just doesn’t get the same enjoyment from it and never will. But in respect to that; sign language is a feast for the eyes, it lays out the story and transcends you into the mood and right into the song. I have a hard time watching someone signing a song and not tearing up. The movements just become the words and they paint the story so beautifully. There are times when I can’t help but sign when listening to a song, to me a song is complete when the beauty of sign language is added. A beautiful replacement for sound.

Mitch is definitely living his life to the fullest. He still has a long list of countries to visit and things to experience  but he has done more to date than I ever expected from him in his whole life.  My view of success for a deaf child in adulthood was a job, an apartment, a car and hopefully someone to love. To date he can check all those boxes and more.

How do we make sure our deaf kids view the glass as half-full? I don’t have any great answers but it seems to me that experiences are what fill up that glass. We were lucky that we had a child who wanted to explore and experience life to its fullest. I think this is to be encouraged not just our deaf kids but all kids.

 

And so it began….

It was a frosty morning that April in 1982, the middle of the month, you’d think it would be warming up here in the Pacific Northwest. But maybe it was my nerves that was sending chills thru my body. We arrived at the Hospital early in the morning to get my labor started. This being my third baby and both previous births were not easy, I was a bit nervous. All settled in and ready to go, here we go , one more time, I can do it. This me self talking me way thru this ordeal called giving birth. The nurse came in to hook up the drug that would get my labor going, a must since my “water” broke the day before. In those days most people never knew if they were having a boy or girl but then it really didn’t matter to us since this baby will have a brother who was 5 years older and a sister who was 3 1/2 years older. To fast forward over all the gory details, labor was extremely hard but not too long, about 8 hours from start to finish. After much struggles baby boy Bergsma was born but I noticed that all the doctors jumped up and looked concern at the moment of birth. I was so exhausted I could barely whisper “what’s wrong?” ” nothing” said the doctor. But I noticed the umbilical cord was tightly wrapped around the baby’s neck and he was not breathing, actually he looked very pale and limp, dead-like really. After all that work was he even alive?  It seemed like an hour went by but I’m quite sure it was only 20 seconds when I heard a wonderful newborn cry. Whew, as I looked over at him, he was nice size I thought, maybe 9 pounds. I was close he was 8# 14 oz and doing pretty well by now. We were ready to introduce Mitchel Kent Bergsma.
At home this baby was spoiled by his sister who loves to sit and hold him. He was a very good baby and I didn’t know what a good baby was like since both his older brother Tyler and sister Tandi were cryers. They cried so much I didn’t know if I could handle another baby who cried. The first week we are doing good, no crying, and on we went , no crying. I can’t remember exactly when I took Mitch to the doctor in concern but I do remember sitting in the room waiting for the doctor to come in, I laid baby Mitchie on the table and said “there, take a look at him”, something must be wrong. Dr Johnson, our kids pediatrician, looked at the baby and said what’s wrong?  I told him it’s been months and I’ve not heard him cry yet, so something must be wrong with him. The doctor took the baby and checked him out thoroughly , then turned to me and said , “well, not sure what to tell you”.  I knew it, I thought, something is wrong! He continued, “I think you have a good baby this time” and then he smiled. I think I actually cried, never had I actually enjoyed the newborn stage of my other two babies because they cried all day. At this point I don’t actually believe it to be true but I went home and told my husband what the doctor said.
Baby Mitchie was such a good baby that he would sleep 12 hours at night and take a couple very long naps during the day. When he was awake he was always happy. He seemed a bit different though and I chalked it up to being such a good baby. And remember we had never experienced this up till now.  He was extremely visual, he would watch and copy your facial expressions, if you smiled big at him me would do the same back to you with his two huge dimples. As he lay in the little seat on the table he made such a loud noise that we all covered our ears. It was a weird sound coming out of a small baby I thought. But I had a good baby this time and that’s what they are like I  guess. Looking back, I now know different but at the time that’s what I thought.
Baby Mitchie was a very huggable baby, so lovable and very happy, always smiling. I can’t really ever say I remember him crabby or crying. When he was around 8 months old when I carried him in my arms he would always put his hand on my throat when I would talk. He did such cute things, so different from his brother and sister.
One time we left him with my sister and her family when he was around 15 months old, it was over the Fourth of July and they took him to a fireworks show. My sister mentioned that he sat the whole time with his eyes shut and seemed scared. It seemed that whenever he was scared or not sure of what was happening he would just shut down and close his eyes. Months later we know why he behaved that way, but it seemed odd at the time.
Months went by, still a good baby, but I’m noticing that he seems to look me in the face and follow my expression but doesn’t really respond to anything I say to him. If I would say “daddy’s home” and by this close to a year old he should understand some of what I’m saying and respond to me. Sometime he wouldn’t even look at me when I’d talk to him, again I thought was he just good-natured or a bit odd? Actually I hate to say this but I did think at one point that maybe he just wasn’t very bright. It was time for his 9 month check up. One thing I really liked about Dr David Johnson was that he never rushed thru the visit, he would sit and listen to any concerns I had. He didn’t disappoint this time either. The doctor asked how everything was going, I hesitated to say this, but I thought I have to get my concern out. I told the doctor I think maybe this baby is not very smart. Doctor J. sat down next to me and said   “well  tell me about it, why do you say that?” I went on to tell him how the baby ignores me when I am trying to get his attention or how he doesn’t respond to me correctly for what I’m saying. The doctor thought for a few minutes, and said maybe he doesn’t hear you. Doesn’t hear me I thought? What, everyone hears, especially babies. After some thought I said, ok then maybe he needs tubes in his ears, I hear that fixes most babies ear problems. Well, doctor slowly said as he was looking thru the files, he hasn’t had any ear infections. So thats not the problem. My mind is running wild, what! Doesn’t hear me! What, everyone hears!  What’s happening here?  The doctor said to go home, talk to my husband Andy, think about it and come back in a few months for the next check up and we’ll see what we think then.
I agreed thats what I would do but my mind is running wild with thoughts. As I am driving home I can’t stop thinking about it and it is starting to come together.  After talking it through with Mitch’s dad, it didn’t take long for us to realize that its possible this baby doesn’t hear. I am thinking of all the things that were different, the strange noises he made, so loud we covered our ears and he made weird little noises in his throat, and always focusing on our faces. I put me hand on my own throat, as he always did, then made a sound.  Oh man, it hit me, he was feeling my voice!  Now I get it, he would feel my voice and then look me in the face. He liked the vibration in my throat. He knew something was happening, he was a smart baby, so very smart really!  At such a young age he was already adapting! I think he was figuring out his surrounds in his own way and learning to deal with them.
That night Andy and I were going over all the details of this baby’s short life so far and all the ways and funny things he did differently than the other two kids. We knew that night, we might have a deaf baby. We bonded together and decided that we would find out everything we could so we would know how to help this truly delightful baby.
I can look back today and say we never had the dreaded “why us” thoughts. We had hard times and a new path to fight through but seldom a pity us syndrome. We thanked God for that first wonderful year of Mitch’s life without wonder of something being wrong.
And this was the easy part…..