Rarely does silence ever play a role in my life these days. Between the laughter, the crying and the blabbering of toddler language, I find silence to be non existent. It’s like unicorns and leprechauns. Is it even real? What is this made up word that has no place in my life?
The noise is a beautiful thing.
I may not recognize it all the time, but MY how I am blessed to be surrounded by the pitter pattering feet, the “I love you’s”, the conversations between your father and I, and the constant on-the-go life of being a mother and a wife.
I take this life for granted so much. Sometimes I want to just hit the pause button and breathe. Sometimes I am in complete search for silence. A lot of the times, I stare at the clock, waiting for your father to get home so that I can just take a tiny little break, all to myself. Most of the time, I can’t get away because I am drawn to you all. I yearn for bed time that allows for your sleepy headed brother’s sweetness to really shine through. For his tiny hands wrapped around my neck, and with one eye open, making sure I’ll stay with him in his bed. I hear you cry, and I’ll lay down beside you and rub your cheeks, stare in to your HUGE gazing eyes, waiting for your giant ear-to-ear smile of nothing but gums.
I recently joined the gym.
It was the best thing I could have done for myself under these stressful times. It is MY time, and I have loved it. I get up early and drive out as the sun is coming up. I listen to the birds who are crazy enough to still be this north of the cold. The sky and all it’s colors are so beautiful. I enjoy the feeling that comes over me, seeing God’s creation at work. I enjoy the cold winter air. I get a chance to think. To listen to music. I reflect on my life and what I have to be thankful for. I reflect on the things we are going through and I try to make sense of it. I don’t have the slightest clue what the purpose of everything is, and I know that is just something I’ll have to deal with, eventually. But, whatever frustration I may have, I work through it here, and I feel much better when I leave. On the ride home, I grab a coffee, sometimes I run to the store. I have my little escape, and then I come home to you.
The noise is a bittersweet thing at times, too.
We just recently found out that you have a little bit of trouble with your hearing.
We aren’t too sure yet of what you actually can hear.
I received a letter in the mail about a week after you were released from the NICU. It was from the Hearing and Speech Department letting me know that we needed to reschedule your hearing screening since you failed it twice already. You were really worked up during both attempts, and they tried to reassure me that because of those circumstances, you should be okay but further testing would be required. Just seeing those words – “FAILED” – on paper, had my mind racing with thoughts. I began clapping loudly by your ear as your head was turned to see if you would respond. Nothing. Your suction equipment is the loudest thing I’ve ever heard. It’s louder than a vacuum cleaner. Anytime we would turn it on, I’d jump, but not you. You remained calm, not even a blink. I became obsessed with yelling around you. Your dad kept telling me to stop, to quit worrying about it. I was worried.
I accepted it though. If you had a hearing problem, or if you couldn’t hear, it would be okay. I prepared myself. If you end up with any other issues down the road, it is what it is. There is nothing we can do about it. You are still perfect just how you were created. You have no boundaries as I see it. We will work through anything, together.
I’d continue talking to you, watching your reactions to noise, and sing to you. You’d smile when I’d sing, I don’t know if it’s because of the movements and expressions of my face, or if you could really hear me and thought I sounded funny. I just wanted to monitor it all so I could let the doctor know when it came time to have your test.
We arrived at the hospital Monday morning, and my stomach felt a little weird. It was my nerves. It could have had a little bit to do with the constant rush we go through in the mornings trying to get out the door. We waited to be called back and then spoke with the doctor about our concerns. Both doctors that were present were very personable, listening to us and responding with clear answers to our questions. You slept throughout the entire test. The doctor kept saying she would have to move your head and how you weren’t going to like it, or you’d surely wake up. You would peek at us and nod off to sleep again. We definitely knew that being restless and cranky would not have an affect on your test this go around. It took FOREVER for them to finish. I saw my life passing before me. We arrived at 10 o’clock, and they finished almost an hour and a half later. I was watching the screen, and I could see some concern from the one doctor who was placing the tubes in your ears. I could tell she wasn’t getting the information she was looking for. She kept saying, “Let’s just go on to the next one and we’ll come back to that.” I wanted to just scream out, “WHAT IS GOING ON?” I just wanted them to give me answers!
When they finally finished, she started to talk about having another test done that would check for fluid. Your dad and I immediately looked at each other and began to ask her questions. It seemed like she wasn’t really ready to share with us, or didn’t want to jump in to what she discovered during your screening.
She was telling us about the test and how it worked. I can’t go too much in to detail, because honestly, all the information that she gave us was a lot of information to take in for someone who knows nothing about the anatomy of, well, anything. She was trying to explain how both ears during the test, should have similar results, that they should be about the same.
Yours, however, were completely different. Your right ear, while it didn’t give the best range of hearing, was much better than your left. Your left ear didn’t pick up a range of hearing, at all. She went to get a graph to show us the difference in your hearing with normal hearing. From her understanding, and from what the test showed, your right ear has moderate to severe hearing loss. She also told us that you may have fluid built up and it could be the cause of the severity of this loss. We are hoping that it’s fluid, and that your hearing loss is more moderate than severe. Either way, you will need a hearing aid for this ear. She went on to explain that your left ear, not picking up a response to sounds, could be the result of a neurological problem, or sensorineural hearing loss. Your left ear is a mystery. We do not know anything about it, and we won’t be able to know more information until you are a little bit older, where you can guide us to understand how your left ear works. We have an appointment coming up in a few weeks to have a mold of your ear made, so that we can order a hearing aid for your right ear. They will also be doing a little more testing on your right ear to check for fluid and to see about placing tubes if that is the case.
Your response to the sound around you once you have your hearing aid is something I look forward to. You don’t make a lot of noise as far as cooing, laughing, or jabbering, and I suppose it has a lot to do with this. What exactly can you hear? You are amazing, little boy, and I can’t imagine what it’s like to be you. But who you are is an incredible thing, and what you will overcome in your lifetime, and what you have already overcome is a testimony to me of how wonderful and how powerful our God is.
I absolutely adore you.
And each of your little “things”.
You have more appointments to check on other “things” in the future.
You have two cysts on your neck, that the doctors of the Hearing and Speech Department say could be possible links to your hearing loss. They say that there is a genetic disorder that links cysts with hearing loss, and this is just another case for your genetics counselor who we will see later on in the summer. He has A LOT of research to do between now and then. I love the idea of being a genetics counselor. With more time on my hands and more schooling, I would love to do something like this. With two kids, it seems like a dream instead of a reality.
You also have an appointment to check on your pinky.
You can’t bend it, so we will have to take you to be scanned. You must have a joint missing. There are no creases where you would bend a finger, telling us that you’ve never been able to bend it. This also could be the result of some type of genetic disorder, and once again in the hands of Dr. Chad, your genetics counselor. We have a lot of information to go over when we see him.
You have more appointments for hearing.
You have more appointments to check on your feeding tube and we will be trained to replace the tube itself at your next appointment. Makes me a little nervous. I’m just now getting comfortable getting under and cleaning it, so taking it out and replacing it is a whole new ball game.
You have appointments for a swallow study, to check and see how much you are actually swallowing at this point. We rarely have to suction you from getting choked up, so we know you are swallowing something, we just don’t know how much you can handle at once. I have been giving you paci dips, which are basically tiny amounts of milk with your paci, to allow you to catch on to the process of it all. You have far exceeded my expectations at this point. I am SO proud of you.
Your next appointment is with your pediatrician, and it makes me a little nervous. He called us yesterday to have us move your feeds up to 30 ML per hour, and to add a little formula to increase your calorie intake. You haven’t had formula yet, so I was a little bummed about it, but whatever we have to do for you, I will. About 4 hours after I changed your bag out, added the formula and increased your feeds, you began puking. It was ongoing from that point. I was so worried about you, because I didn’t want you to dehydrate. I tried monitoring you for a while, but it just wouldn’t stop, so I called the on-call doctor and spoke with her about my concerns. She had me bump your feeds back down and take away the formula. I don’t know if you had an allergic reaction to the formula, or if you just couldn’t handle the increase. It makes me nervous because your next appointment was going to be focused on coming up with a plan to take you off of continuous feeds.
You don’t understand. This whole feeding pump thing is ridiculous at times! It is impossible to walk around with you, because the big, clanky pole goes with you as well. If you were fed through a syringe all at once, I could close the flap on your G-tube and off we’d go! Oh, it would make life so much easier. If we can’t get your feeds bumped up, and your stomach really is just too small at this point to handle bolus feeds, then we stay on the continuous feeds. We just wait and see where you are at and we’ll take it from there.
I write a lot, and I’m sorry for that, but these are just things I want to remember down the road. I want you to hear about all the things you’ve dealt with, with what we’ve dealt with. I know that there are much worse things that can happen to people, and I am just so thankful that the things that have affected you aren’t things that will break you. I’m thankful for you and for the patience to care for you. I thought that when I’d hear any information like we’ve been handed about your case, that I’d just break down and cry or feel completely lost. I felt like it would be too much for me to handle. Like it would be a life-ruiner.
I can’t help to think about how much worse it could be. I have to. It could be. You have outstanding health, no matter all the other things you go through. We find out your hearing is impaired? So what. You’ve had multiple surgeries? Big deal. Your pinky is already in the perfect position to drink tea properly? Awesome. You are just too cool for me to even compare to. Sign language isn’t a big deal if it comes to that, and you’ve got lots of very willing and knowledgeable people to help us out on that journey whether you need it or not.
I just want to let you know that we are still all standing with you, and you’re a strong little dude. Your happiness truly fills the people around you with warmth and hope. You and your brother are a blessing to us, and I always want you both to know that.