Wearing a lead vest
Chris, Ellis, and I left the house at 9 am this morning and drove down to the hospital for Ellis's scheduled 10am CT scan. We arrived on time, got checked in, and waited and waited and waited.
I was already a little edgy, because for the CT scan they needed--of the inner ear--he had to super-humanly still, so that meant sedation. And with sedation means no solids, then no clear liquids for requisite hours ahead of time. I always worry how E will do when he starts to get hungry. But, he was having so much fun running around with the other kids in the waiting room that his lack of breakfast didn't seem to bother too much. Finally an hour and a half later, we were taken back to the sedation unit.
One by one, people filed through, explaining the drugs, the procedure, giving forms to sign, taking vital signs. And then they inserted the IV on the back of his little hand and started dripping the drugs into his system. He quickly went groggy and then fell asleep. I hate it. I hate watching that unnatural haze settle on him. I cried. It was hard on Chris, too. It was his first time seeing E sedated; it was my third.
We got to accompany Ellis into the room where he had the scan, a simple 10 minute procedure. We were given lead vests to wear. They lifted Ellis's limp body onto the stretcher thingy and draped a lead covering over him, too. The bottom of his red sneaker peeked out, a metonym of the boy attached to it lying asleep.
When the scan was over, he was wheeled back into the room, we then settled down to wait for him to wake up. I found some lunch; we watched Basil Rathbone on the TCM channel and fidgeted in the uncomfortable chairs. Two hours later Ellis woke up, writhing in the cords attached to him. He did fine and drank a cup of juice well. Unfortunately just as he was waking up, Chris had to leave to get to work on time. It took almost an hour to get discharged from the sedation unit. And during that time, Ellis was desperate to get the IV out of his hand.
Finally we were ready to head down to meet with the ENT. I plopped the woozy boy in the sling and we walked downstairs, and proceeded the long waiting for each stage of this visit. E drank some more and ate yogurt. He was frantic to get down and run around, but he couldn't. Every time his feet touched the ground he pulled the drunken sailor routine. Unfortunately he could not understand this simple reality, so the next two hours were of me wrestling a screaming and writhing Ellis from barging through hyperreality. And we waited.
The ENT doctor finally came in, reviewed the CT scan results with me and all was clear and looking good in his inner ear. He talked about a few basic aspects fo the surgery with me--nothing new, reviewing basic procedure and risks. He asked me which brand of cochlear implant we wanted. Oh, something I hadn't thought of; a choice between two. And then all of a sudden I found myself with operation consent forms poised underneath a pen in my hand, the vehicle for my signature. I wanted to choke as I signed, but managing Ellis diverted my emotions.
The ENT left, the nurse practitioner came back in. Quickly followed by my angel MIL who had called earlier while I was in ENT purgatory and had come to rescue me and the Hyde child from Septa. The nurse explained to us what is going to happen next. We have a date of July 2 set aside for Ellis's surgery. That's less than three weeks away.
It all so seems so perfunctory, a date to schedule a drastic change in my child's life. A change I'm not even sure I want. He's such a beautiful kid. He's beautifully deaf. He signs so well and so naturally. His world is exciting and wonderful, and he doesn't need to hear for it to be so. He has a language. Why does he need another one? Why does he have to have the one that rest of America uses? Why does he have to learn how to talk? Why can't he just be the way he is? He was born this way. Why can't it stay the same?
We have been so hesitant about attitudes toward the cochlear implant. It's benefits for hearing are tremendous and often gets over-eagerly embraced as a "cure" for deafness. We have always viewed the use of the implant for our son as nothing more than a "fancier hearing aid." We don't want it to compromise his deafness, because it is just a tool to make a part of his education easier. For him to be bi-lingual and bi-cultural there truly needs to be two, and it seems like the implant will make it easier for him to have the English side of the bi.
But don't congratulate us. Don't send happy vibes. I sit here and sob. They will put wires and a magnet inside my boy's head. Is that something to be happy about? I groan in this world's brokenness.
Comments
oh J- I know nothing to say be
oh J- I know nothing to say besides I will pray for you and your precious boy.
Oh please,don't do it. Ellis
Oh please,don't do it. Ellis will do just fine without the cochlear implant. AS a teacher of the Deaf (9 years now), I can't say enough how many students I have seen suffer because of their Cochlear Implants. I cannot tell you how many students I have seen lose their esteem, their language, their education, among others--because of their cochlear implants. I'm not saying that CI's themselves cause the problems, but societal and educational views change with a child with a CI and more often than not, the child suffers. Don't do it, please!
I STRONGLY encourage against h
I STRONGLY encourage against having your child implanted. I am Deaf, a former ASL professor, and I am a former CI user.
It has been nothing but a nightmare for me. I've got slight loss of facial nerves on my right side, I have trouble sleeping even 10 years later, because I can constantly feel it inside my skull.
Your son is perfect as he is right now. Please reconsider. Please.
You can view a video of my implant surgery here:
http://www.youtube.com/watch?v=p3XXTUELdUg
As you can see in the video, they CARVE a deep hole in the skull, place this device in there- and they detached my ear from my skull and put it back. To this day, my ear detaches on its own sometimes and I have to "pop" it back in place. It is a nightmare.
The procedure thins out the thickness of the skull. This makes it a fragile point. If your son got kicked or hit hard enough in that spot, the skull could cave in.
I do not hear at all, I am 100% Deaf. And I've held jobs that paid very well. I've done very well in life. My wife is completely Deaf and does not speak. She has a bachelor's degree in English. She used to be an editor's assistant for Science Magazine, used to be head of Youth Leadership Camp, used to be a head of her own department in the NAD, used to be an English professor at Gallaudet University.
There are many Deaf people that are very successful and they don't hear or speak. If people are telling you otherwise, that is baloney!
Please, for the sake of your child, do not do this. Please. Think about your feelings. What do they tell you?
I am quoting you:
"But don't congratulate us. Don't send happy vibes. I sit here and sob. They will put wires and a magnet inside my boy's head. Is that something to be happy about? I groan in this world's brokenness."
What are you waiting for? Why are you allowing this to continue?
Sincerely,
Erick
This entry was beautifully wri
This entry was beautifully written and I am constantly impressed by the sensitivity with which you have navigated a complex cultural territory. No matter what happens, no matter what anyone else says, as long as you are doing what you think is best for Ellis, it IS the right thing to do. Nobody knows him or loves him like you. You will all be in my thoughts. Good luck!
Oh, Jeannette! How tough. I ca
Oh, Jeannette! How tough. I can't even imagine what you're going through. We'll be praying for you guys. We love little E and hope he has a WONDERFUL second birthday tomorrow.
I just feel like I need to say
I just feel like I need to say something.
First, we have spent the last two years of E's life researching and talking to people about the cochlear implant. We've heard/read everything--the nightmare experiences, the successes, the pros, the cons, the general distrust from the Deaf community, parents who use it as "cure."
We ask that people trust us in our decision.
* We are at one of the best hospitals in the country. (Children's Hospital of Philadelphia) The ENT has performed this surgery many, many, many times. He uses a facial nerve monitor and has never had an instance of facial nerve damage. He does a tiny incision behind the ear; I've seen his work. A little girl in E's class had a CI, and a week after her surgery, I could barely seen the incision. Medically, I'm feeling confident in this surgeon's ability. Everybody raves about him, and from I've seen, he's worth it. He also has wonderful bedside manner. He's friendly, takes the time to answer questions, and genuinely cares about the whole family. And I've had that experience across the board at CHOP.
* They say for a CI to be a "success" depends on the work put into after the process. I agree. It seems that a lot of the unrest about the CI is the culture surrounding, attitudes, expectations. That is not the problem of the CI, it's a user problem. I'm not going to not implant my son because his parent might be irresponsible; that's a people problem, not a technology problem. So since we are the people in question, part of the reason we've taken this long to go for the implant is to equip ourselves more fully to raise him bi-cultural. To gain a stronger foundation in sign (though we have a long way to go). To seriously consider educational strategies for his future that empower Ellis the most as a Deaf person. We are hearing, all our family and friends are hearing. As desperately as I want to give him a place in the Deaf community, it's harder for that to happen. I have to work to find Deaf friends and to give him those social experiences. I don't anticipate any of our work in that category to change after his CI, but I really need our Deaf friends right now. I need you to trust and not to judge us. To continue to provide the friendship that will give Ellis those experiences and allow us to develop in our own signed language skills and cultural understanding.
* It's not just a CI thing; it's a whole culture clash thing. Trying to give the best of both. It's hard. I do want him to learn to speak; I think it will open doors for him/give him an easier time in some things. The CI will help that. Why would I torture him trying to learn how to speak with the minimal help the aids give when it could be so much easier for him with the CI? He'll learn to speak. But our plan is always for him to have an ASL specialist in his IEP, too. He needs to learn both languages well. We have a high regard for language and are not afraid of technology to benefit our lives.
I second that your entry was b
I second that your entry was beautifully written, but not just that, but your thoughtful response to why you are going ahead with the surgery. We love E. And are hurting with you, and excited with you, too.
Jeanette, I will be praying fo
Jeanette, I will be praying for you and trusting in God's sweet and everpresent mercy for your family. God has entrusted Ellis to your care and will equip you with the tools for raising him. I understand that this world is full of suffering and I know why you weep over the brokenness. Much love to your family.
Jeanette, As an occasional re
Jeanette,
As an occasional reader of your blog I do have to say how much I've been impressed by your diligence in E's circumstances. I remember the first time I read when you discovered your son was deaf -- a scene from Mr. Holland's Opus flashed through my mind. I was trying to imagine how my music major friends would handle it if they were in your shoes. I think you have given them all a wonderful example to follow. I know there are levels of anguish and distress you are feeling that I can't relate to, but I just wanted to say that I am praying for you, Chris, and E. God will be glorified in this.
Blessings and may God take car
Blessings and may God take care of you all in these uncertain times.
I feel for you, putting your trust in the surgeons' skills and hopes for hearing abilities, but I dearly wish you would leave Ellis as he was born.
These times the art is still far from perfect and the CI operation will destroy any future chances for gene therapy to regenerate the cochlear hair cells that brings about hearing.
Whatever happens, we will support you and encourage you all to stay in touch with the greater Deaf community and its Deaf professionals who are skeptical of the CI but still are willing to nurture those who have them.
Just remember that you are attempting to keep Ellis within your culture; that is understandable. We also have parents joining the Deaf culture as well, and they are welcomed with heart and enthusiasm.
Jeannette, these are such hard
Jeannette, these are such hard times that the majority of us can't personally relate to, but know that you are in our prayers. When I first had Caleb and was figuring out what it meant to be a mom making daily decisions for this little life I was overwhelmed. A friend of mine wisely advised me that Bob and I are the best parents that Caleb could have. That we need to trust our decisions for him because God didn't give him to anyone except us. All those struggles with feeding and nursing and hard decisions that came with that, we made the best decision for our child and our family as God so faithfully carried us. So I echo other's comments that you trust the process God has put you in, where he's brought you since Ellis was born, where you are now and how he has and will lead you. May God bless you in your decisions and may the fruit of those decisions burst forth with evidence of his amazing leading and wisdom in your lives. So that you can look back on this experience and give no one praise but God, because you know that he has provided and carried you through. I love you,
MichelleW
Oh, Jeannette, I just ache wit
Oh, Jeannette, I just ache with you. I've been proud, too, to watch how thoughtfully you've handled the individual child you've been entrusted with. I hurt to think about the pressure you must be feeling from all sides and I know the ache of hurting for this fallen world's affects on your child.
I can't help but think about Gid and the surgical decisions we'll be making for him in a few years and about what an awesome resource and understanding support you'll be. It makes me happy to think about all those you'll be able to cry with in the decades to come as you support them and hurt with them in these same type decisions. Your rough road now is going to help ease the load for so many later. Thanks so much for sharing everything. I'll be praying for you and thinking about you a lot in the next few months.
Jeannette, You will all be in
Jeannette,
You will all be in my prayers. I know it pales in comparison, but Dana has had two small surgeries and I don't think anything has ever been as hard as handing my precious boy over to a surgeon. I felt like Abraham, with my son on an altar.
In all of this stress, remember who it is that carries you through all of this brokenness... although I'm sure He'll remind you Himself.
There isn't much I can add her
There isn't much I can add here, Jeannette. But I can't resist repeating the observation that your post was beautiful --and a testament to how much you love your dear sweet boy. My thoughts and prayers are with you, Ellis, and all your family.
Wow, my friend, this must be t
Wow, my friend, this must be the hardest decision you've ever had to make. And what a loaded one too! It was hard to read those comments, but your response was excellent. I hope we can meet before the surgery since I'll be traveling to Brazil on July 11, not too long after. I'll keep Ellis, you, Chris and the rest of your family in my prayers.
J'net - I'm late finding this
J'net - I'm late finding this post, but better late than never! Dear friend, I will pray for you, Chris, and your precious child every day until the surgery. May our Lord give you peace that you don't even understand as you approach this. He is a redeeming God. He does not need perfect situations to produce His glory and our good - Ellis's good. May he guide you, and bless you. MK
It appears that the mother mer
It appears that the mother merely wanted the English SIDE of the Bilingual system because it benefits HER, not HIM.
It's all about her and her ego.
R-
"It appears that the mother me
"It appears that the mother merely wanted the English SIDE of the Bilingual system because it benefits HER, not HIM."
Ummmm. . . did you read the post and comments? Or are you just making snap, prejudicial judgments?
Read the quote: "We don't wan
Read the quote:
"We don't want it to compromise his deafness, because it is just a tool to make a part of his education easier. For him to be bi-lingual and bi-cultural there truly needs to be two, and it seems like the implant will make it easier for him to have the English side of the bi."
Make it easier for him to have the English side of the bi in order to satisfy his parents' fantasies.
YOu know, I have many deaf friends whose their parents are hearing ones -- they did not bother to learn ASL. Little fingerspelling there and that but otherwise, read their lips. That attitude reflects their hopeless hope in having a deaf child to bark like them.
R-
"For him to be bi-lingual and
"For him to be bi-lingual and bi-cultural there truly needs to be two. . ."
While we are from the US, my children's early years were lived in another country. I'm not ignorant of raising children bi- culturally. Of helping them explore and be comfortable in the approaching culture (for E, English) while having security and "home base" be our family and our originating culture (US). Reality is, there is not a clear dividing line between two cultures when raising children bi-culturally. Aspects of both the originating culture and approaching culture are intermingled--both at home and out in the world.
I am right there with Michelle
I am right there with Michelle. There are a lot of things in life we cannot find exactly spelled out for us and no one else can tell us what to do. You do what you have done. You look around, count the cost, pray, and go for it. I think that people who try to tell you what to do are obnoxious. I suppose that is the mother in me talking!
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