 |
 
|
Forum Rules:
Who Can Read The Forum? Any registered user or guest.
Who Can Post New Topics? Any registered user or guest.
Who Can Post Replies? Any registered user or guest.
Changes: Messages can be edited by their author if registered.
Posts: HTML code is OFF. Smilies are ON. vB code is ON. [IMG] code is ON.
| Main > Introductions > THE PINTO IS BACK IN THE GARAGE |
| Topic Review (Newest First) | |
| Ruth Murphy | Dear Jef,
I can only echo what EMDAD wrote. Did he ever hit it on the head...the feelings...the reality, which often times feels so unreal. Hannah had her eye surgery yesterday. She fared very well and is recovering nicely I am happy to report. And I know it pales in comparison to "the pinto", but even just a fraction of the anxiety you must be feeling was present in me. It is so hard to see your baby have so much going on that they can't comprehend. I felt so helpless. She was lying there drugged, asleep, prodded and probed with monitors, tubes....I could do nothing. People do stay away for whatever reason. It doesn't mean there are no friends. It is a lonely time because, I think, others don't know what to say or do. I just hoped they were praying for me. I tried to have faith that supernaturally through their prayers, I would be undergirded with strength, somehow... When Hannah came to, briefly in recovery, she said, "All done!" and went back under. I kept that phrase with me all day, knowing that even if there were going to be obstacles in the future, at least for now, in this moment and after each new thing, I could harmonize with her in saying, "All done." Know that my prayers are out there...may they supernaturally cause moments of strength for you and Shannon. Much love, Ruth |
| Emdad | I can't help with #2. Probably can't help with 1 & 3 either, other than to say that you aren't alone on either count. You and I both know that doesn't give these kids to special parents - that is a crock. You also find out who your real friends are, and for me, that wasn't very many to begin with. In their defense, however, most people (including myself before all of this) don't have a clue about what you're going through, or what they could do that would help. I got stopped on Saturday at the mall by a woman who saw Emma and gave me some very encouraging words about her 24 yr. old son with DS, how he's got a job, etc. In a way, it was nice to hear, but I would have just as well never had a reason to have that conversation in the first place, if you know what I mean. It hits and it hurts all of the time in the strangest places for me, sometimes. I don't know if it will ever go away.
On the other end of the spectrum, you are being robbed of the best part of your kid right now, and that will only come with time. What I mean is, that when I'm with Emma at home, or she's on my lap, or giving her a bath, and she's smiling and giggling and handing me things, and mimicing sounds, the rest of the world could go to hell. She brings me such joy in just being with me, if that keeps up, I can handle the rest. That's my biggest wish for you. Make no mistake, you are still stuck in what sounds like the hardest thing you've ever had to face (it is for me, and not nearly as bad as yours). But you are doing it, and you should take some pride in what you've accomplished so far. Character is what you are when no one else is around, and the rewards can also be lonely ones, but recognize yourself for them just the same. Now I'm rambling. Thanks for letting me rant. Jeff |
| BlessedbyHim | Dear Jefry,
I can relate to your exhaustion, frustration and desperation. My son, Russell, spent 7 weeks in intensive care and had a great deal of feeding problems. We also received CPR training, apnea and SAT monitor training, and had to learn to insert/remove an NG feeding tube. It's all very frightening, unnerving and stressful....But, it does get better! Russell is now feeding very well from a bottle - we thicken his formula with rice cereal so he doesn't aspirate (draw fluid into his lungs). He no longer needs the monitors or oxygen! I know there are MANY days when you don't think you can put one foot in front of the other, and when you get sick to your stomach when you walk through the front doors of the hospital, etc. Even in those times when it seems God is silent or absent, He is still there. He promises that He will NEVER leave us or forsake us. Those are not just pat words, they're words I have experienced first hand. Russell does not have any heart problems, but I would imagine that surgery will improve your son's condition greatly, even the feeding issues. Other people, even our closest family, could not really understand what we face. So, yes, I did feel very alone. You have to have been there yourself - so don't be too hard on your co-workers, it sounds like they are concerned, they just don't know what to do or say. I do understand. I will pray for you and your family to be strengthened and encouraged. My heart hurts to know the pain and struggle you are going through right now. Because you have "fought" so hard for your son, your love and relationship with him will be so different (much stronger and fulfilling) than the others we see who have a much lighter burden. Be sure and take care of yourself, as hard as that is. It really does make it easier to cope with all that's going on. Just wanted to let you know there is hope and light at the end of the tunnel and others who have been there and care. |
| Solveig | Dear Jefry,
I am so sorry to read that Joey's back in ICU. I can't even imagine how hard this is for you, because I've been so lucky that Bene didn't have any medical problems. It's hard to find words that'll give you some comfort. Feeling alone is a very lonely feeling. And knowing God's plan in this, is above me. My only hope is that one day all of us will get the chance to ask him in person. I know that I'll have a few comments on his behavior as well as many questions. As for your questions; Of course you still say this isn't fair! It's not fair, and it never has been. My biggest struggle after having Bene, has been to realize that unfair things happen, and this time it happened to me. Like you, I wanted everyone around me to know how unfair this is, but I realized that they can't, because they have no idea. They don't even realize how lucky they are to have a healthy child. And that's probably why we feel alone in this, too. It has taken me a long time, but I finally faced the fact that I can't expect the people around me to know how I feel. The only time I haven't felt alone in this, is when I've talked to people who are experiencing the same kind of problems. As far as Joey's medical problems, I do believe that once he's had his surgery, a lot of them will fade. I know that having problems eating, the apnea problems and everything else can be related to his heart condition. To my knowledge, these problems should fade and eventually disappear once he's been through the surgery. I'll be praying for you and for Joey and Shannon, and know that even though I haven't been through what you're going through, you're not alone. And next to Joey's side, is an angel who never sleeps and never looks away. He's wrapping his wings around your little son. Love, Solveig |
| Jefry Klein | Well, where do you start.
Joey was admitted back into Riley's Children's Hospital last week, and was put into the Intensive Care Unit. He is having the HARDEST time eating and breathing. It seems that when he eats (which is almost never) the milk goes into his lungs. This is the third time that this little guy has been admitted into the ICU. This guy isn't even 5 months olds, and he has spent more time in the hospital then I have, and I'm 39 and accident prone. His major heart surgery (i think it's the A/V canal one) is scheduled for April 12, (being he could hold on that long). He just now hit the 10lb mark. Shannon will fill you in on all the Medical problems that he has accured in her post. I don't know the names of them, I just know they suck. Yesterday they trained Shannon and I on how to read his Heart monitor/Apnea monitor, how to regulate his breathing, how to tube feed him, and how to do CPR. It seems that when they send him home this time, he will be hooked up to these machines. OK - Now comes the venting. MAN THIS SUCKS. Shannon spends day and night (literally) in the hospital with this guy. I go to see him, and can't even make it to his room without getting all choked up at all the other little children there. I'm lucky if I can spend an hour with him. THIS IS KILLING ME. WHEN DOES IT GET BETTER, HECK.... DOES IT GET BETTER. I am more aware of people with little/infant children. Man, they just don't know how rich they are. Now for some answers to questions that I hope you people can help me with. 1. Why is it, when I see a newborn (within a year) with his christian mother and father, that I turn to god in disgust. And still say this isn't fair. How long do I have to continue to feel this way. Why can't I let it go. I look at them and say to myself, now there is a family that you should've given one of your special children to. Don't get me wrong, you were all right, I WOULDN'T TRADE JOEY FOR ANYTHING, but that still doesn't make it any easier. 2. Are all these medical problems something that will go away with his heart surgery. 3. Do you feel that your alone on this (NOW BE HONEST). I mean people where I work (I'm in the Navy) always offer thier "How's Joey, How's shannon questions. But not one of them every called my wife to see how she was REALLY doing. Ok, it's late and I'm probably taking up to much of this thread. That plus it's 3:15am and i'm starting to babble. Will keep you informed. Thanks for the ears.... jef |
< Contact Us - Down Syndrome: For New Parents - Privacy Statement >
Powered by: vBulletin Version 1.1.3
Copyright © Jelsoft Enterprises Limited 2000.
Copyright © 2001 Thomas and Michel Paul