Summer is quickly approaching and we are filling our weekends up with fun, family and friends. It kicks off this coming weekend with a trip to Houston and the Kemah Boardwalk. None of us have been and it looks like fun. We are hoping B-man will be able to go on some of the rides. We have to be in H-town anyway to drop off our travel trailer at a consignment center to sell...long story there. I will save that one for a future blog. The next weekend is the fulfillment of a promise made to my beautiful friend, Carrie, as she was dying. She called me over to ask two favors. The first was to make sure that her oldest daughter, who is a high school senior, had a really great graduation party. That one was easy, of course I would! The second one took some careful consideration. She asked that if anything should happen to her husband, would we be the guardians for their twin 13 year old daughters? Wow, she was trusting us to care for her girls? That was quite a compliment that they would entrust us with their children. It was also a huge responsibility. We had already survived one teenage girl, could we manage to make it through two of them? After some careful consideration, we decided that, yes, we could.
Next Saturday is Jade's graduation party and we are having it here at our house since they will be playing host in their own home to out of town guests. The next day, being Sunday, we will drive to our home town to pick up little Moo baby and take her on an adventure to Oklahoma where we will stay in a cabin, go fishing and drive through a safari type park where the animals come up to your car window and eat from a bucket. We are all excited about the weeks events. I am looking forward to seeing everything through her two and a half year old eyes. She is an extremely bright and verbal child who can recall experiences with great flourish. She also pays close attention to detail so she will often recall something that I completely missed. That week will wrap up on a Thursday and we will have Friday and Saturday to spend with my mom, Buddy's dad and our daughter. We will come back home on Sunday and have five days to regroup before trekking yet again to our hometown for Moo baby's third birthday party. She is excited about this as it will be held at her favorite place, Chuck.E.Cheese.
Yes, it will be a busy couple of weeks and if your recall from one of my earlier posts that travelling with B-man is no easy feat. It requires much planning. However, it is well worth the trouble to see him light up with the recognition that he is going to see his gammie. Let's not forget the cruise that is still in the planning stages, to be taken later in the summer or early fall. (Not to be confused with the other one being planned for our thirtieth anniversary) We have cruised with B-man before and found it to be a most enjoyable vacation. Since the wheelchair accessible staterooms are significantly larger than their standard counterparts, it is also a bonus to have him with us. Yes, he is definately a bonus and not just because of the room.
I love making memories. They are an important part of the human psyche. Losing Carrie has made me more acutely aware of just how important it is to make memories with the people you love. Long after the event is over the memories will remain. This summer will be hard for me because in the past, Carrie and I would while away the days lounging by the pool, going to lunch or perusing our local TJ Maxx. I miss her dearly and on the bad days, I rely on my memories with her for comfort. I am hoping that time spent with us will build memories for Moo baby so one day when we are no longer here she will remember us. This summer is the beginning of our memories in the making.
~Ginger~
Wednesday, May 19, 2010
Tuesday, May 18, 2010
Finally On The Mend
B-man has a diagnosis! He had been experiencing severe feeding problems and appeared depressed for months now. I have suspected that he was depressed due to aging out of school but without verbal skills, he is unable to express his feelings. A few weeks ago I made an appointment with this gastrointerologist and had some tests done. They came back positive for H. Pylori, the bacteria that is most responsible for intestinal ulcers. Poor guy, the doctor suspects that he has been in pain, thus the shutting down of emotions to deal. The treatment is nearly as bad as the condition. A combination of four different medications given four times a day for ten days. That is a lot of drugs on top of his already impressive array of medications.
Things went smoothly until the last four days of treatment when the antibiotic effects finally appeared. We were knee deep in poop for nearly a week! I don't mean to be graphic but he was also on Pepto Bismol and if you have ever taken it, you know the effect it has on stool color. This stuff was like cleaning up and OPEC misshap! Life with B-man is messy. We deal with it and laugh later. Okay, there have been several occasions when we dissolved into laughter while in the midst of cleanup but that was only to keep from crying. Once, when B-man had been in the hospital and on IV antibiotics for several days, poor Buddy happened to be on the receiving end of an explosion of epic proportion. When the eruption finally stopped there was poop on the wall, the ceiling, the floor, the chair nearby and when Buddy looked up at me...there, on his forehead, was a huge glop of poop! Yes, that was a hysterical moment that will never be forgotten.
I am happy to report that since completing his treatment, B-man is now voluntarily eating and finishes about 75% of all of his meals. He is also tolerating the supplemental formula better and has actually gained a couple of pounds. But the best thing is that he got his happiness back. He is, once again, the happy and smiling little man that I love so much. It is so good to see that precious smile! I have missed it. Yes, as those of you who know me can guess, I have beaten myself up over the fact that he was sick so long and I didn't figure out what was wrong. But I have decided that I can't know everything. (Although I feel like I should!)
Life in our household has, once again, been restored to a temporary state of wellness. For now, Life is good!
~Ginger~
Things went smoothly until the last four days of treatment when the antibiotic effects finally appeared. We were knee deep in poop for nearly a week! I don't mean to be graphic but he was also on Pepto Bismol and if you have ever taken it, you know the effect it has on stool color. This stuff was like cleaning up and OPEC misshap! Life with B-man is messy. We deal with it and laugh later. Okay, there have been several occasions when we dissolved into laughter while in the midst of cleanup but that was only to keep from crying. Once, when B-man had been in the hospital and on IV antibiotics for several days, poor Buddy happened to be on the receiving end of an explosion of epic proportion. When the eruption finally stopped there was poop on the wall, the ceiling, the floor, the chair nearby and when Buddy looked up at me...there, on his forehead, was a huge glop of poop! Yes, that was a hysterical moment that will never be forgotten.
I am happy to report that since completing his treatment, B-man is now voluntarily eating and finishes about 75% of all of his meals. He is also tolerating the supplemental formula better and has actually gained a couple of pounds. But the best thing is that he got his happiness back. He is, once again, the happy and smiling little man that I love so much. It is so good to see that precious smile! I have missed it. Yes, as those of you who know me can guess, I have beaten myself up over the fact that he was sick so long and I didn't figure out what was wrong. But I have decided that I can't know everything. (Although I feel like I should!)
Life in our household has, once again, been restored to a temporary state of wellness. For now, Life is good!
~Ginger~
Wednesday, May 12, 2010
Randomness Run Amok
Today is teeth cleaning day for B-man. He abhorrs having anyone even touch his mouth let alone brush or clean his teeth. I am sure it stems from all of the surgeries he had to repair his cleft lip and palate as an infant. They were painful surgeries with long recovery times followed by twice a day massages to the area to reduce scarring. Which, I must admit, worked. Many people cannot tell he ever had a cleft lip and it was a bad one at that. Of course, having a world renowned craniofacial surgeon helped, I am certain.I have to help hold him down during these cleanings and I hate being the bad guy where he is concerned. I work so hard to have fun with him but it always seems to come back to me being the one that has to do or help with all of the painful or uncomfortable treatments. Maybe that is why he seems happier when his dad is doing his care. Dad can be his safe person, the one that isn't holding him down or doing dressing changes or g-button changes or brushing his teeth each morning. That would be me, the mom.
In all honesty though, I prefer to be the one that does all of these things because, being a nurse, I tend to be the most thorough. The one that never questions, "Can't we skip it just for today?" No, we can't because if we do then we will begin skipping it more often and you know what that means. You eventually stop doing it altogether. No, I never ask that question, I just do it.
Now as I have said before, my hubby is an incredible man. He loves his family and is fiercely protective of them. So I don't want to make him seem like a slacker. Quite the opposite is true actually. He is a hard worker and gives 110% in everything he does. No, it isn't that he doesn't want to do the treatment, it is just that he hates to see his little boy suffer in any manner.
Living with B-man is a challenge in every sense of the word but it is also one of the biggest blessings I have ever been priviledged to receive. Buddy and I are coming up on yet another wedding anniversary and although it is doubtful that we will be able to properly celebrate it as a couple, I do not feel bad. We made a conscious decision when B-man was born to keep him with us as long as he is alive. We were once told to find a good institution and place him there before we became too attached...seriously? Too late, I be came attached the moment I found out I was pregnant! During the precarious two years that followed, spending hours upon hours alone with him in the hospital, only served to further strengthen that bond. So when the suggestion was made to "place him somewhere", I quickly shot back, "He is already placed in the only home he will ever know, ours". No, my hubby and I whole heartedly accept that we are no longer a couple but a trio. Mom, Dad and B-man. To borrow a phrase from a friend of my mother's, "The Three Musketurds"! HA!
Currently in the planning stages is a huge trip to celebrate next year's momentous anniversary. Knowing that we are unable to make that trip alone we have decided to include my mother. Yes, maybe there are a few ulterior motives at work here. Although, she cannot lift or perform B-man's care, she does retire earlier than myself or my husband so maybe, just maybe, we could sneak a couple of nights in at the disco or even a late night romantic dinner on our balcony. Okay, there is alot of ulterior motive but hey, we have to be creative!
Until next time,
~Ginger~
In all honesty though, I prefer to be the one that does all of these things because, being a nurse, I tend to be the most thorough. The one that never questions, "Can't we skip it just for today?" No, we can't because if we do then we will begin skipping it more often and you know what that means. You eventually stop doing it altogether. No, I never ask that question, I just do it.
Now as I have said before, my hubby is an incredible man. He loves his family and is fiercely protective of them. So I don't want to make him seem like a slacker. Quite the opposite is true actually. He is a hard worker and gives 110% in everything he does. No, it isn't that he doesn't want to do the treatment, it is just that he hates to see his little boy suffer in any manner.
Living with B-man is a challenge in every sense of the word but it is also one of the biggest blessings I have ever been priviledged to receive. Buddy and I are coming up on yet another wedding anniversary and although it is doubtful that we will be able to properly celebrate it as a couple, I do not feel bad. We made a conscious decision when B-man was born to keep him with us as long as he is alive. We were once told to find a good institution and place him there before we became too attached...seriously? Too late, I be came attached the moment I found out I was pregnant! During the precarious two years that followed, spending hours upon hours alone with him in the hospital, only served to further strengthen that bond. So when the suggestion was made to "place him somewhere", I quickly shot back, "He is already placed in the only home he will ever know, ours". No, my hubby and I whole heartedly accept that we are no longer a couple but a trio. Mom, Dad and B-man. To borrow a phrase from a friend of my mother's, "The Three Musketurds"! HA!
Currently in the planning stages is a huge trip to celebrate next year's momentous anniversary. Knowing that we are unable to make that trip alone we have decided to include my mother. Yes, maybe there are a few ulterior motives at work here. Although, she cannot lift or perform B-man's care, she does retire earlier than myself or my husband so maybe, just maybe, we could sneak a couple of nights in at the disco or even a late night romantic dinner on our balcony. Okay, there is alot of ulterior motive but hey, we have to be creative!
Until next time,
~Ginger~
Monday, May 10, 2010
Learning To Delegate
That is a term we often use in nursing, to delegate, but I seldom use it in my home life. I prefer to do things myself. That way, I know they are done correctly. Cocky? Probably, but true. Recently, with the wrist injury I suddenly experienced, I have had to use the term at home now as well.
Admittedly, my wonderful hubby, who can care for B-man with as much expertise as myself, usually must face my judgemental glares and disapproving sharp tongued quip of, "That's not how I do it". This time however, I am holding back on the criticism and allowing him to do it his way. Beggers can't be choosers, right? So what if B-man still has some straggly little beard hairs left on his chin because dad isn't as meticulous about shaving as I am. I try to ignore them. The diaper cream tube is squished in the middle? Still not a peep from me. B-man's fingernails have gone without a good cleaning and trim for several weeks now but because I cannot physically do it with my wrist, I keep mum. I began noticing little ants scurrying around near the medication bottles the other day and on closer inspection, I realized that the bottles had not been wiped down. Those little ants were probably on a drug crazed sugar high as a result. Okay, yes, that really bugged me (pardon the pun) but I am still keeping quiet. Buddy is a sweetheart of a man and an incredible father and grandfather. The fact that he helps out is wonderful and I am blessed to have his help.
No, delegating is not always easy. I hired a maid the other day. I had one when we lived in our hometown and she was magnificent. But since we have lived in our current city, I have chosen to not hire one. Quite frankly, I was afraid that she would not clean my house to my expectations and I would have to not only pay her but then re-clean it myself. I did a little investigating prior to the hiring and I think it was well worth the time. I have two different neighbors with maids. I asked them about their respective maid and then watched their driveways to see when they were getting their home cleaned. I then made a little impromtu visit to each of their homes shortly after the cleaning occurred. I looked closely at each of the home to decide which maid did the better job. One of them was by far the cleaner home so, that was the maid I chose. I am happy to say that she did not disappoint. I do feel a bit lazy as I lounge on the couch reading while she whizzes about dusting this and cleaning that. However, I keep reminding myself that I am doing it to give my wrist time to heal. At this rate is may never heal! Hmm, maybe delegating isn't such a bad thing after all!
~Ginger~
Admittedly, my wonderful hubby, who can care for B-man with as much expertise as myself, usually must face my judgemental glares and disapproving sharp tongued quip of, "That's not how I do it". This time however, I am holding back on the criticism and allowing him to do it his way. Beggers can't be choosers, right? So what if B-man still has some straggly little beard hairs left on his chin because dad isn't as meticulous about shaving as I am. I try to ignore them. The diaper cream tube is squished in the middle? Still not a peep from me. B-man's fingernails have gone without a good cleaning and trim for several weeks now but because I cannot physically do it with my wrist, I keep mum. I began noticing little ants scurrying around near the medication bottles the other day and on closer inspection, I realized that the bottles had not been wiped down. Those little ants were probably on a drug crazed sugar high as a result. Okay, yes, that really bugged me (pardon the pun) but I am still keeping quiet. Buddy is a sweetheart of a man and an incredible father and grandfather. The fact that he helps out is wonderful and I am blessed to have his help.
No, delegating is not always easy. I hired a maid the other day. I had one when we lived in our hometown and she was magnificent. But since we have lived in our current city, I have chosen to not hire one. Quite frankly, I was afraid that she would not clean my house to my expectations and I would have to not only pay her but then re-clean it myself. I did a little investigating prior to the hiring and I think it was well worth the time. I have two different neighbors with maids. I asked them about their respective maid and then watched their driveways to see when they were getting their home cleaned. I then made a little impromtu visit to each of their homes shortly after the cleaning occurred. I looked closely at each of the home to decide which maid did the better job. One of them was by far the cleaner home so, that was the maid I chose. I am happy to say that she did not disappoint. I do feel a bit lazy as I lounge on the couch reading while she whizzes about dusting this and cleaning that. However, I keep reminding myself that I am doing it to give my wrist time to heal. At this rate is may never heal! Hmm, maybe delegating isn't such a bad thing after all!
~Ginger~
Friday, April 23, 2010
Emotional storms
It has been a rough few weeks for our family. B-man's weight continues to drop as he refuses to eat and even the g-button feeds are not helping. His skin has become paper thin an even the smallest scratch becomes a big infection. On top of all of this, I somehow managed to hurt my wrist so now I am in a brace that does not allow for me to do many of of daily chores. I am abl eto do B-man's care but with great difficulty and probably at a detriment to the healing process of my wrist. It it painful, yet I am chosing to not take any pain medications that would possibly interfere with B-man's safety of me caring for him while "under the influence" of a narcotic analgesic.
I am in a constant state of worry about him. We have always understood that his time on earth would be shortened. However, after 24 years with him, I am not ready to let go. So, I continue to fight for him, even when I can clearly see that he himself is no longer fighting, nor is his body in a position to allow him to fight. I am still not over greiving the loss of my best friend yet, I DO NOT want to lose my baby as well. I don't feel like I could survive it emotionally. I am teetering at best right now. Never in my life have I had such feelings of despair as now. I have always been able to withstand anything that life threw at me and smile anyway. Not right now.
I am aware that grief can cause these huge emotional storms as well as the fluctuating perimenopausal hormone levels. I am in hopes that soon, I can work my way through these evil joy stealers and find my happiness for good once again. I do not like feeling like this. It makes me feel weak. I continue to pray but I think God is on vacation with no cell service at the moment. So, for now, I just keep leaving messages that my power is out. Hopefully, He will return soon.
~Ginger~
I am in a constant state of worry about him. We have always understood that his time on earth would be shortened. However, after 24 years with him, I am not ready to let go. So, I continue to fight for him, even when I can clearly see that he himself is no longer fighting, nor is his body in a position to allow him to fight. I am still not over greiving the loss of my best friend yet, I DO NOT want to lose my baby as well. I don't feel like I could survive it emotionally. I am teetering at best right now. Never in my life have I had such feelings of despair as now. I have always been able to withstand anything that life threw at me and smile anyway. Not right now.
I am aware that grief can cause these huge emotional storms as well as the fluctuating perimenopausal hormone levels. I am in hopes that soon, I can work my way through these evil joy stealers and find my happiness for good once again. I do not like feeling like this. It makes me feel weak. I continue to pray but I think God is on vacation with no cell service at the moment. So, for now, I just keep leaving messages that my power is out. Hopefully, He will return soon.
~Ginger~
Tuesday, April 6, 2010
Moody Blues
Normally, I am a glass half full kinda girl. I accept life at face value and try to use humor as much as possible. However, lately I have been grumpy, irritable and just downright moody. I cry for no apparent reason and snap at my poor sweet unsuspecting hubby. What is going on? I feel like I am Dr Jekyl and Mr Hyde! I highly suspect a combination of hormones and lingering grief are to blame. I have been offered a supplement for the hormone issue but do not choose to go that route. I don't like drugs. I have a small pharmacy as it is what with all of B-man's meds so I really do not favor adding anything else to the lot. As for the grief, well,I guess only time can heal a hurting heart.
I miss my friend very much. There aren't any other girlfriends that I talk to on a regular basis. When we moved, I left them all behind and now that I am basically a stay at home mom, I really have no way to make other friends. I have attempted to start up a group of other mom's with adult children that have special needs but so far, I am the only one that seems to have any real interest in it. Both times I have set up nights out, most everyone backs out. The first one, only one person came and this last one, only two people showed up. I guess two is better than none though. Really, I am just lonely. I will get over it eventually...I hope. I have never felt this alone before. My friend was always there to hang out with, go shopping or just grab lunch. Now, it is just B-man and me going out to eat or shopping. I miss the girl talk, heck I just miss any talk. With B-man being non-verbal, I do all the talking. I have to admit though, he is the best secret keeper EVER!
The other problem is one of judgement. My friend's hubby is beginning to date again. It has only been barely 3 months, shouldn't he still be grieving as well? He takes his new "friend" to very nice restaurants, much nicer than anywhere he ever took his wife. That makes me hurt for my friend. I feel like she is being betrayed. I know, it isn't any of my business but I am still grieving her loss so badly and I cannot even imagine if it had been my spouse that at only 3 months out, I would be anywhere near ready to date again. It just gets to me, that's all. My hubby said even he is bothered by it all but they are friends and so he keeps quiet. I fear that he will soon invite her to one of our little get togethers. What will I do? How will I act? What will I say? Hopefully, I will have the answers to these questions before I actually need them!
As for my mood, I want to feel better. It seems that along with the bad mood comes aches and pains that I have never had before. I am ready for these to go away as well. I am sure that stress plays a major role somewhere in all of this because B-man has been having feeding problems and Sissy has been in the hospital.(Thankfully, she was released last night and is now feeling better.) My kids really do keep me on my toes. I am always saying that I simply do not have time to be ill myself because I am so busy caring for them. Speaking of which, I'd better go to bed...the feedings begin at 0500!
~Ginger~
I miss my friend very much. There aren't any other girlfriends that I talk to on a regular basis. When we moved, I left them all behind and now that I am basically a stay at home mom, I really have no way to make other friends. I have attempted to start up a group of other mom's with adult children that have special needs but so far, I am the only one that seems to have any real interest in it. Both times I have set up nights out, most everyone backs out. The first one, only one person came and this last one, only two people showed up. I guess two is better than none though. Really, I am just lonely. I will get over it eventually...I hope. I have never felt this alone before. My friend was always there to hang out with, go shopping or just grab lunch. Now, it is just B-man and me going out to eat or shopping. I miss the girl talk, heck I just miss any talk. With B-man being non-verbal, I do all the talking. I have to admit though, he is the best secret keeper EVER!
The other problem is one of judgement. My friend's hubby is beginning to date again. It has only been barely 3 months, shouldn't he still be grieving as well? He takes his new "friend" to very nice restaurants, much nicer than anywhere he ever took his wife. That makes me hurt for my friend. I feel like she is being betrayed. I know, it isn't any of my business but I am still grieving her loss so badly and I cannot even imagine if it had been my spouse that at only 3 months out, I would be anywhere near ready to date again. It just gets to me, that's all. My hubby said even he is bothered by it all but they are friends and so he keeps quiet. I fear that he will soon invite her to one of our little get togethers. What will I do? How will I act? What will I say? Hopefully, I will have the answers to these questions before I actually need them!
As for my mood, I want to feel better. It seems that along with the bad mood comes aches and pains that I have never had before. I am ready for these to go away as well. I am sure that stress plays a major role somewhere in all of this because B-man has been having feeding problems and Sissy has been in the hospital.(Thankfully, she was released last night and is now feeling better.) My kids really do keep me on my toes. I am always saying that I simply do not have time to be ill myself because I am so busy caring for them. Speaking of which, I'd better go to bed...the feedings begin at 0500!
~Ginger~
Monday, April 5, 2010
The Trip Of A Lifetime
If you are the parent of a child with special needs then you most likely have heard the poem "Welcome to Holland". It uses the analogy of being on a flight to a particular destination then, upon arrival, finding out you landed in a foreign country where you know no one and don't speak the language. Well, being the parent of a child with special needs is exactly like that.
Twenty four years ago, I was traveling along in life, enjoying the ride, thinking it was quite a lovely trip. Then one day without warning, my itenerary changed without prior notification. My destination was no longer where I wanted to go. "I didn't sign up for this", I protested. I felt like my complaints fell on deaf ears. "HELLO? Are you hearing me? This is NOT where I am supposed to be!" Still nothing. Then, I asked the million dollar question..."Why?"
Most of the time I love Holland. My favorite thing is the smiles. They are big, warm and unconditional. But I don't always like Holland. I especially dislike the pain and illness. Often there is a lot of those two things here. However, now that I am here, I never want to leave. Oh, I still dream of that other destination I had in mind so many years ago but leaving Holland would mean that I would have to do so without my sweet little B-man. Holland is his home, he knows nothing else...yet. I realize that one day we both must leave Holland and go our separate ways. It is not something I like to think about but I know it is there. We have been in Holland far longer than anyone predicted and for that, I am ever grateful.
My question has never been answered. I have learned to be amused by sudden changes in plans instead of annoyed. I have met people that I would have never gotten the chance to meet. I have been directed in a career path that I would have never pursued without this experience. But most of all I have learned to stop asking "Why" and instead to say "Thank You".
Yes, it was a shock to wake up in such a foreign country but it has become a most incredible journey filled with more love that I ever thought possible.
~Ginger
Twenty four years ago, I was traveling along in life, enjoying the ride, thinking it was quite a lovely trip. Then one day without warning, my itenerary changed without prior notification. My destination was no longer where I wanted to go. "I didn't sign up for this", I protested. I felt like my complaints fell on deaf ears. "HELLO? Are you hearing me? This is NOT where I am supposed to be!" Still nothing. Then, I asked the million dollar question..."Why?"
Most of the time I love Holland. My favorite thing is the smiles. They are big, warm and unconditional. But I don't always like Holland. I especially dislike the pain and illness. Often there is a lot of those two things here. However, now that I am here, I never want to leave. Oh, I still dream of that other destination I had in mind so many years ago but leaving Holland would mean that I would have to do so without my sweet little B-man. Holland is his home, he knows nothing else...yet. I realize that one day we both must leave Holland and go our separate ways. It is not something I like to think about but I know it is there. We have been in Holland far longer than anyone predicted and for that, I am ever grateful.
My question has never been answered. I have learned to be amused by sudden changes in plans instead of annoyed. I have met people that I would have never gotten the chance to meet. I have been directed in a career path that I would have never pursued without this experience. But most of all I have learned to stop asking "Why" and instead to say "Thank You".
Yes, it was a shock to wake up in such a foreign country but it has become a most incredible journey filled with more love that I ever thought possible.
~Ginger
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