Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 Tim, I was going to send this to you privately, but then I decided there was nothing in it I wouldn't share with the list and I'd be curious to see their replies too. We learn so much from each other. > 1. When (e.g. at what age) did you feel bonded to your child with > CHARGE? > I think I bonded with Aubrie before she was born. We knew she was going to be a girl, and we named her long before her arrival. We wanted an " Aubrie " with our first pregnancy but got . So this time, we were thrilled that she was finally coming. After birth, she immediately felt like " mine " . However, I do remember thinking at one time early on that she was more like a " bunch of medical problems " than a " baby " . I could not nurse her and that hurt me a lot. I pumped for 3 months. I think the breastmilk connection is an important one for me, so it felt good that I could provide her nourishment even tho I couldn't nurse her. To answer the question, I felt bonded before birth, but the after birth experience was very different than with my first child. > 2. Was this different than with any of your other children if you've had > any? > With my son, I felt like he was a part of me -- almost literally. We nursed, so our bodies were in perfect rhythm. When he was hungry, I was ready. We lived in a new state with no friends or relatives, so I rarely left him (only when we were visiting with my mom -- and then only between nursings). We had illnesses together. We were so incredibly close. With Aubrie, I couldn't get that close. I couldn't nurse her. I had to leave her, first in the hospital and then with home nurses so I could get sleep. I even let a friend-of-a-friend-of-a-friend watch her in my home one day when I was desperate for a nap. With , I felt like I could predict and imagine his every mood, feeling, thought... With Aubrie, her experience was unlike anything I'd been through, so I couldn't begin to know what it felt like to be her. But I did learn to know what her discomfort was, when she was tired, hungry, etc, how exactly to handle her, etc. > 3. Did anything happen or did you experience anything that made you > realize you were bonded? > I don't remember any defining moments. Well, I do recall during one of the many tests in the beginning (can't remember which one) that she looked at me with her eyes just pleading for me to make it all better. I knew that she knew that I was " the mama " . > 4. When did your child demonstrate to you that he/she felt attached to > you? > From the beginning, Aubrie calmed in my arms and looked to me for comfort. Maybe it was just my perception, but it seemed to be the case. > 5. Was this different than with any of your other children if you've had > any? > I think was the same in his attachment to me. It began immediately. > 6. Did anything happen or did you experience anything that made you > realize your child felt attached to you? > Again, I don't recall any defining moments except that one during the test. I always felt like she knew I was her mom. This isn't directly related to any of your questions but maybe it answers something indirectly. When Aubrie was in the PICU (not the NICU because we were a transfer) before and after her heart surgery, I couldn't stand to see her in pain during procedures -- IVs, blood draws, etc. My mom stayed with her a lot during those times and I stood out in the hallway crying. I knew I should be there for her, but it just hurt so much to see it. I was thankful that my mom could stay -- even tho I know it killed her too. I felt like a bad mom abandoning my child during a time of need, but I just could not tolerate it yet. Later, I could stay thru anything. Now I wonder if I'm too immune to her discomfort during procedures. Good luck with your research and your presentation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 Thanks Michele. I appreciate your responses. Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 1999 Report Share Posted May 11, 1999 S. Hartshorne wrote: > > > > Hi everyone. Several years ago attended a workshop that talked a > bit about attachment issues between parents and children with > disabilites. I've been thinking about this for awhile, and am interested > in your views. I am speaking at a conference later this month, and > would like to address this issue, and so I need your help. > > I have been interested in some time with the issue of attachment or > bonding between parents and child. I have been wondering how it may be > different for those of us with a child who has CHARGE. What I would > like to do is gather some preliminary information from all of you who > would like to share your thinking on this with me. I will look at your > comments and compile them, and present them at a conference I am > attending in May. Obviously, all of your responses would be kept > anonymous. I would not disclose any names to anyone. If you want to > share your thoughts with me, you could either respond directly to me at > tim.hartshorne@..., or to the list as a whole. If you do decide > to just send your comments to me, do check before you send to make sure > it is only me it is going to. I've goofed that up myself from time to > time. > > Bonding is the word used to refer to the experience of parents, while > attachment is used to describe the experience of the child. Here are > the questions I have been wondering about: > > 1. When (e.g. at what age) did you feel bonded to your child with > CHARGE? About 15 months after we voluntarily gave up some of our nursing hours to take over control of our son. Before that, we had all these nurses giving their opinions and trying to take over for us that it made it very difficult. When he was in the hospital (for the first 4 mths of his life), it was difficult to really get to know him, because of all the operations, tubes etc going in and out of him. > 2. Was this different than with any of your other children if you've had > any? Yes, much different. I have a four year old who was born perfectly healthy. She came home after three days in the hospital and she was my first child. Even when I left her with family to go back to work, I felt very close to her and she felt very close to us. It took a little longer for our son to know who he should get comfortable with, although he always knew me and trusted me. It took a little longer for him to bond with his father than with me, because I was mostly with him, especially when he was in the hospital. > 3. Did anything happen or did you experience anything that made you > realize you were bonded? No. I think this gradually happened over time, and I see it still happening. He just turned 2 years old. He is " in love with me " now, always has to know where I am and is very clingy to me. He loves to play with his dad and his sister also. I think he bonded with his sister first before anyone. He always asks for " daddy " and now daddy feels more comfortable taking care of him, but this was no different than my daughter. My husband is better with the kids as they get older and can do more, I am better with infants. > 4. When did your child demonstrate to you that he/she felt attached to > you? Again, this happened over time as he became more stable and as we became the primary care givers to him, now that we don't have anymore nurses. Even at the end of our nursing, he prefered to be with me. He is now very attached to me and knows his family, even his grandparents and cousins. > 5. Was this different than with any of your other children if you've had > any? Yes. My daughter only knew mommy and daddy. She did not have twelve different nurses coming and taking care of her in the house. She had a normal " babyhood " , my son did not. He was left in the hospital at night by himself, then brought home only to be taken care of by nurses around the clock. Now that he is healthier, he is able to go to places with us like the grocery store, where my daughter went when she was 3 months old, and she came everywhere with me. The experiences each of my kids has received because of the medical issues has been totally different, and I believe that plays a major role in connecting with the child and really getting to know the child and vice versa. > 6. Did anything happen or did you experience anything that made you > realize your child felt attached to you? My son is getting more attached to me as he is getting older and more aware of the good things in life, one of them being " mommy " . My experience with him now is, that every single time I leave the room he cries and carries on. If he is busy and playing and then sees me he will start to cry, because now he knows he wants me. > > Thanks for your help! > > Tim Hartshorne, father to (CHARGE and 10 today), and Josh, , > , , Seth, and , and husband of . > > ------------------------------------------------------------------------ > Having difficulty getting " in synch " with list members? > http://www.onelist.com > Try ONElist's Shared Calendar to organize events, meetings and more! > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Tim, here are my answered questions. 1. My pregnancy with MacKenzie was completely unplanned and I had a hard time dealing with having a baby at all. It was probably not until I realized how sick she was that instinct took over and made me the protective, loving mom. 2. There are days that I think my 7 year old and I still haven't bonded. We constantly battle. My 4 year old and I hit it off at birth, he was a great baby and I was older and more mature. 3.Before the CHARGE diagnoses we knew MacKenzie had something wrong with her heart and possibly brain malformations. Everyone in my family was waiting for the CT results and praying that her brain be ok, and I got really angry. At that point I didn't care what kind of brain damage she had just as long as her heart was okay and we didn't lose her. This was when I fell completely in love, I knew I'd except her in any way as long as she lived. 4. I don't think MacKenzie really bonded with us until about 3months old when she came home from the hospital. Luckily she had some amazing nurses and was lovingly taken care of so she didn't really make a distinction between us until I was with her all the time. 5. I think my other children depended on me from day one, as there was no one else. 6. I think MacKenzies' development took off when she came home from the hospital. This showed us that the stability and constant love at home had helped her to bond with our whole family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Faith, Most causes of bruises are mearly having too many small blood vessels too close to the skin's surface. I take aspiran so I don't pay alot of attention to bruises on my legs or arms. Are you talking about bruising with out any reason...exp. go to bed fine ...wake up with bruising on stomach....belly....back?? Check the meds you are presently taking and see what they say about bruising or bleeding in the adverse reactiion section or cautiion one. Unfortunately alot of meds that are out there that increase our mood swings will increase appetite too...why?? maybe because we start feeling good about ourselves and happy people eat regular meals. Plus so many meds that contain steroids or cortizones ..increase fluid retention...ergo weight gain.If your feet/ankles are swelling over your socks and leaving indentations that remain for awhile but go down when you rest them by elevating..that's fluid retnetion and your Dr. should be told about it. IBS if left unchecked will lead to diverticulitis. Control of IBS should be under a dieticians care until you are comfortable knowing the what's and what nots to eat. Hope this answered some of your questions. Your friend, k > Is bruising without a cause part of fibromyalgia? > Also, I realize Elavil (Amitriptylene) is the drug of choice for > treating FM. Those of you who are on it does it increase your > appetite and have you gained weight? > My friends DR put her on Desyrel, any feedback from anyone on that? > I know irritable bowel syndrome usually goes along with FM. What > about diverticulitis? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Thanks for the compliment, , but honestly I didn’t churn out my questions particularly systematically. If I had undoubtedly I wouldn’t have thought of the couple of extras that I forwarded after. The questions really just came tumbling out as I thought over your problems. Quite right of course CJ, bits of the material had been raised by you, and duly tackled in part. But I guess I wanted to have the whole of the answers together in one hit. If as you say , your answers may vary according to the mood you’re in, might indicate that you are in need of some professional guidance to help you come to conclusions. But see just where your thinking leads you in the meantime. Take your time. Good luck,Ron.Subject: Re: extra question Ron, CJ,Today I only want to acknowledge and thank you both for your responses, and especially to you, Ron, for the well thought out comprehensive list of questions you've knocked up for me. I do intend to answer them with as much care as you have clearly spent compiling them, but please can you give me a day or two to gather my thoughts properly?This morning, when I first scanned the questions, I thought they were going to be quite easy to answer, but now, having given it more thought, I realise my life is in something of a state of turmoil, having arrived at the junction of many roads and not knowing which direction to take. OK, some of those questions are purely factual and I can answer relatively easily, but there are others where my thinking isn't clear, and I could choose to answer in different ways depending on which of those roads I believe it would be best to take. There's a touch of " chicken-and-egg " to this situation!Anyway, I'll be back soon; see you all later.Thanks again,+ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.