I would like to say Happy New Year to all the Hemophilia Moms and their families.
My family had a great 2007. We had limited medical problems and only a few of the normal kid sick days.
My son (Alex) and I traveled to the Annual meeting in Orlando and had a great time while making new friends and see old ones. With out trying we learned a lot while enjoying ourselves.
Alex and I also visited a private ranch in Virginia and had the most awesome time (to quote my son). We met other families with hemophilia as well as just having a wonderful time.
My daughter Kristin could not join us this year she is attending her sophomore year in college.
It is so hard to let go sometimes, but I am very proud of her. She is trying so hard to be a positive contribution to our community and she is being very successfull. She enjoyes being a camp counsler at hemophilia camps and also attending them as a camper. She is a carrier that also is diagnosed with mild hemophilia, so if any of you women have any questions for her I will pass them on.
looking forward to meeting some of you in Denver, Co at the next NHF meeting.
Have a safe evening and I hope to talk to you soon.
Monday, December 31, 2007
Monday, December 24, 2007
Sunday, December 16, 2007
Reflection
As I sit here this morning and watch the snow falling ever so quietly, I remember the blizzard we had in December of 1978, the weekend my 3 month old son was diagnosed with severe hemophilia. Sitting in the intensive care unit, trying to absorb what we were being told, Todd's Dad and I struggled to acknowledge, accept and move forward - we were able to acknowledge, but the acceptance and moving forward came much later.
Thinking back I realize that was a pattern we followed throughout our lives. Each time we were confronted with something new there was the need to acknowledge, accept and move forward. For each, the time frame for that acknowledgment and acceptance in order that one could move forward,was different. For each, our coping mechanisms were different. But the basis for all remained consistent: we loved our sons and from that love grew a thirst for knowledge; with our knowledge we gained control; with that sense of control we lived normal lives in a not so normal world.
Thinking back I realize that was a pattern we followed throughout our lives. Each time we were confronted with something new there was the need to acknowledge, accept and move forward. For each, the time frame for that acknowledgment and acceptance in order that one could move forward,was different. For each, our coping mechanisms were different. But the basis for all remained consistent: we loved our sons and from that love grew a thirst for knowledge; with our knowledge we gained control; with that sense of control we lived normal lives in a not so normal world.
Wednesday, December 12, 2007
What is Important to You?
Had a chat with some of the other mom contributors to this site today. We all agreed that we want to make this blog the most beneficial to you. In order to do that we want to know “What is important to you?” We invite you to tell us what is on your mind, share a story, ask a question, voice a concern, or simply bounce an idea off of another mom. If you need information, encouragement, or support we want to be here for you. The moms on our team monitor this site daily. Although we will not be able to give you a real-time answer we will be able to respond within a day or so.
Everyone is invited and encouraged to post a comment on this blog. It is a very simple thing to do. If you would like to make a comment, ask a question or tell us anything on your mind, all you have to do is click on the word “comments” at the bottom of this post (or any post). That will bring up a screen with any previous comments on the left side. The right side of the screen will be a place for you to leave a comment. Just type in what you would like to say and click “publish your comment.” If you have a google account you can sign in so that your screen name will appear on the bottom of your comment or you can remain anonymous. (If you don’t have an account you can create a google account if you like.)
Your participation, input, questions, stories, concerns and needs are what this site is all about. It is why we are here! We want to help you, encourage you, and relate to you Mom to Mom.
Looking forward to chatting with all of you!
Everyone is invited and encouraged to post a comment on this blog. It is a very simple thing to do. If you would like to make a comment, ask a question or tell us anything on your mind, all you have to do is click on the word “comments” at the bottom of this post (or any post). That will bring up a screen with any previous comments on the left side. The right side of the screen will be a place for you to leave a comment. Just type in what you would like to say and click “publish your comment.” If you have a google account you can sign in so that your screen name will appear on the bottom of your comment or you can remain anonymous. (If you don’t have an account you can create a google account if you like.)
Your participation, input, questions, stories, concerns and needs are what this site is all about. It is why we are here! We want to help you, encourage you, and relate to you Mom to Mom.
Looking forward to chatting with all of you!
Friday, November 23, 2007
Happy Thanksgiving
I hope everyone had as great of a day that my family and I had. We enjoyed great food, good friends, many family members plus the new puppy we now have. I am not leaving town again any time soon. I was in Phoenix last week and when I came home our family had grown by one puppy.
We watched the Dallas football game, and I was able to inform everyone that the kids and I have played on that field as well. My first year at the NHF was in Dallas and we had an outing to the Dallas Foodball Stadium, it was a blast, we met players and cheerleaders as well as have a great nite of fun and freindship.
Enjoy everyday.
We watched the Dallas football game, and I was able to inform everyone that the kids and I have played on that field as well. My first year at the NHF was in Dallas and we had an outing to the Dallas Foodball Stadium, it was a blast, we met players and cheerleaders as well as have a great nite of fun and freindship.
Enjoy everyday.
Wednesday, November 21, 2007
Family Time
Tomorrow is Thanksgiving, a time to be with our families. During these times is when i realize the most that my children are kids first. That with today's technology, and choices if you are outside looking in on my family, you would see just that a family. Do not let Hemophilia lead the way, you lead the way and have a great Holiday
The Gift of Being Thankful
During this week I have had an opportunity to be busy, frustrated, frazzled, late, and stressed. You would think I might be upset about it but believe it or not I am thankful. Thankful to be so busy with my children that at times I don't even have time to fix my hair (pony tails are in aren't they?). Thankful that I have an opportunity to be frustrated with fighting sibblings, who forget where they put their shoes. Thankful that I am frazzled because we have to get to music class, tennis lessons, get our science experiment done, then get home and cook dinner before rushing off to a meeting for work. Thankful that I have the opportunity to be late for a lunch appointment because a child had taken off with the van keys and we spent 15 minutes scouring the house before they were located upstairs in the bedroom. Thankful that even though the stress of "getting everything done" somedays is more than I can stand. Thankful! Yes, I am thankful.
When I think of the alternative...lots of free time, relaxation, always looking my best, never late, and always calm. This sounds really good but at a price that I am not willing to pay. If this were my life it would be terribly empty. Think about it. Being single was fun and we did what we wanted, when we wanted to. But what did we all desire? We all desired to be married and have a family. And it is those precious children that have pressed in on our time, but I wouldn't trade it for the world. My first born son introduced me into the world of hemophilia with quite a jolt. There was no family history. So we were completely surprized and well as terrified at the diagnosis. But looking back now I would not change a thing. Though I do not like to see my son suffer with his bleeds and infusions I would not give up the wonderful character development that having Hemophilia has provided. Nor would I give up the wonderful friends and families that I have met through this tough disorder. The Hemophilia community has allowed me to meet such great, committed and commpassionate people (like all of you) who have inspired me and uplifted me in times of dispair. We can choose to look at Hemophilia as a blessing or a curse. But before you call it a curse, evaluate all of what you have been given (friends, personal growth, support, education and experiences). I choose to look at living with Hemophilia as a blessing. and I hope you do too!
Have a great day and take time to be thankful!
When I think of the alternative...lots of free time, relaxation, always looking my best, never late, and always calm. This sounds really good but at a price that I am not willing to pay. If this were my life it would be terribly empty. Think about it. Being single was fun and we did what we wanted, when we wanted to. But what did we all desire? We all desired to be married and have a family. And it is those precious children that have pressed in on our time, but I wouldn't trade it for the world. My first born son introduced me into the world of hemophilia with quite a jolt. There was no family history. So we were completely surprized and well as terrified at the diagnosis. But looking back now I would not change a thing. Though I do not like to see my son suffer with his bleeds and infusions I would not give up the wonderful character development that having Hemophilia has provided. Nor would I give up the wonderful friends and families that I have met through this tough disorder. The Hemophilia community has allowed me to meet such great, committed and commpassionate people (like all of you) who have inspired me and uplifted me in times of dispair. We can choose to look at Hemophilia as a blessing or a curse. But before you call it a curse, evaluate all of what you have been given (friends, personal growth, support, education and experiences). I choose to look at living with Hemophilia as a blessing. and I hope you do too!
Have a great day and take time to be thankful!
Tuesday, November 6, 2007
Exect the Unexpected
While I was at NHF in Orlando meeting and chatting with all you wonderful moms, little did I know what was going on back home. My husband and children were home on the West Coast. Friday morning was Factor morning... however, you guessed it, my husband forgot or maybe was just hoping nothing would happen. My son has a port and dad has tried to access it but has never been successful in doing so. So fear or forgetfulness, whatever the case, brought a frightening evening for our family. Something that all of us sub-consciously fear. "What if I am not there when my son needs me?" I was about to live out this very fear.
After retiring for the night...about 11:45pm (8:45 pacific time) the phone call came. "Honey I am in a delima, Brock fell on his head and cannot get up, he is disoriented and screaming. I am not sure what to do." In sheer panic I sat up in my bed, now wide awake and tried to calmly ask "Did you give him his factor this morning?" When the dreaded "no" answer came so did the tears and near panic. I was 3000 miles from home and could do nothing...nothing that is but pray. I instructed my husband get out the supplies and start on the factor, and that I was going to make a call. You see we have 3 younger daughters who were home, scared and screaming as well which were only adding to my husband's stress and anxiety. I called a dear friend who was so kind as to drop everything and drive to my home. While on the phone with me she arrived at my house and asked what to do. I said, "knock on the door and if it is open go in, then gather the girls and get them out of the room." She guided them upstairs, put jammies on and began to read stories to them to distract and calm them down. What an angel. My next phone call was to the Associate Pastor and his wife who immediately prayed then also came to the house.
At this point my husband was not having success in accessing the port so he called me back and put me on speaker phone. He was stressed, frustrated, and just wanting to just take Brock to the emergency room. "You need to get his factor into him before you go." I said, "You really don't want them doing it if at all possible. He needs to be treated now." He agreed and tried again, and again with no success. With much anxiety and a not so nice tone of voice he was beginning to "lose it." With every bit of calmness I could muster I said "Babe, just take a deep breath and try again, just reposition the needle." Of course my heart was racing, and I was praying desperately in my mind for the Lord to guide his hands.......then....finally....success! He was able to get the factor flushed into the port! (This was the first time ever that he was successful!!!!) I cannot tell you what a relief that was! Then they were off to the emergency room for a CAT Scan to check if there was a fracture or any bleeding into the brain. Pastor accompanied them, for which I was truly thankful that my husband would not be "alone."
Brad, my husband, then said, "Just go to sleep and I will call you with the results." Sleep! Are you crazy? Crying and praying was all I could for the next 4 hours until the call back from my husband saying, "We are on our way home, the CAT Scan was normal, no bleeding or fracture." This was an absolute miracle! It was like an elephant finally got up off my chest and I was able to breathe...and yes finally fall asleep. Of course it was now 5am for me and I had to work at the convention. So after peeling my eyes open at 8am, and buying the largest cup of coffee I could find I set off to the exhibit hall. For those of you who saw me, my sincere apologies. I was a mess!
But I do believe that all things work together for the good. I have been telling my husband for a couple of years now that we needed a back up plan, just in case Brock needed treatment and I was not there....So unfortunately he got on the job training! Brad actually did it under stress and pressure only to see that he could actually give a factor dose. I do not recommend this method however do think about an alternate plan for those unexpected times when you hope nothing will happen and it does. Practice without the stress is probably the better way to go.
Have a great day!
After retiring for the night...about 11:45pm (8:45 pacific time) the phone call came. "Honey I am in a delima, Brock fell on his head and cannot get up, he is disoriented and screaming. I am not sure what to do." In sheer panic I sat up in my bed, now wide awake and tried to calmly ask "Did you give him his factor this morning?" When the dreaded "no" answer came so did the tears and near panic. I was 3000 miles from home and could do nothing...nothing that is but pray. I instructed my husband get out the supplies and start on the factor, and that I was going to make a call. You see we have 3 younger daughters who were home, scared and screaming as well which were only adding to my husband's stress and anxiety. I called a dear friend who was so kind as to drop everything and drive to my home. While on the phone with me she arrived at my house and asked what to do. I said, "knock on the door and if it is open go in, then gather the girls and get them out of the room." She guided them upstairs, put jammies on and began to read stories to them to distract and calm them down. What an angel. My next phone call was to the Associate Pastor and his wife who immediately prayed then also came to the house.
At this point my husband was not having success in accessing the port so he called me back and put me on speaker phone. He was stressed, frustrated, and just wanting to just take Brock to the emergency room. "You need to get his factor into him before you go." I said, "You really don't want them doing it if at all possible. He needs to be treated now." He agreed and tried again, and again with no success. With much anxiety and a not so nice tone of voice he was beginning to "lose it." With every bit of calmness I could muster I said "Babe, just take a deep breath and try again, just reposition the needle." Of course my heart was racing, and I was praying desperately in my mind for the Lord to guide his hands.......then....finally....success! He was able to get the factor flushed into the port! (This was the first time ever that he was successful!!!!) I cannot tell you what a relief that was! Then they were off to the emergency room for a CAT Scan to check if there was a fracture or any bleeding into the brain. Pastor accompanied them, for which I was truly thankful that my husband would not be "alone."
Brad, my husband, then said, "Just go to sleep and I will call you with the results." Sleep! Are you crazy? Crying and praying was all I could for the next 4 hours until the call back from my husband saying, "We are on our way home, the CAT Scan was normal, no bleeding or fracture." This was an absolute miracle! It was like an elephant finally got up off my chest and I was able to breathe...and yes finally fall asleep. Of course it was now 5am for me and I had to work at the convention. So after peeling my eyes open at 8am, and buying the largest cup of coffee I could find I set off to the exhibit hall. For those of you who saw me, my sincere apologies. I was a mess!
But I do believe that all things work together for the good. I have been telling my husband for a couple of years now that we needed a back up plan, just in case Brock needed treatment and I was not there....So unfortunately he got on the job training! Brad actually did it under stress and pressure only to see that he could actually give a factor dose. I do not recommend this method however do think about an alternate plan for those unexpected times when you hope nothing will happen and it does. Practice without the stress is probably the better way to go.
Have a great day!
Saturday, November 3, 2007
GOOD MORNING
IT HAS BEEN GREAT VISITING WITH ALL YOU MOMS OUT THERE.
It is Saturday, the last day of the NHF meeting here in Orlando, Florida.
As we move on to our final day, new friends will be made, old friends reunite, all with one thing in common... to be part of a caring community.
Hemophilia moms will always be here for each other.
Have a safe trip home and stay intouch. We are looking forward to blogging days with you all.
Rhonda and Jenny
It is Saturday, the last day of the NHF meeting here in Orlando, Florida.
As we move on to our final day, new friends will be made, old friends reunite, all with one thing in common... to be part of a caring community.
Hemophilia moms will always be here for each other.
Have a safe trip home and stay intouch. We are looking forward to blogging days with you all.
Rhonda and Jenny
Friday, November 2, 2007
thanks for coming to brunch
About 40 ladies attended our brunch, this morning a good time was had by all. Many moms had a chance to meet, chat and enchange stories, hopes and dreams. We were all encouraged and are looking forward to connecting and networking with new moms as well as experienced moms! Grandmoms were welcomed and encouraged to participate as well as pass their expertise, knowledge and their loving touch! Again thank you so much!
We are looking forward to seeing you at Sea World tonite as we "Dine with the Penguins"
We are looking forward to seeing you at Sea World tonite as we "Dine with the Penguins"
It's almost time, meet us for our Mom's Brunch at 11:00 am this morning.
Meet us in the East Tower, Floor 11, Room 90.
Meet the Hemophilia Mom's, and Mom's from across the country -
share in what we believe is, and will become, one the greatest venues in which Mom's can talk to Mom's anywhere in the world, sharing thoughts and feelings, seeking advice, and just plain being connected to others who walk your path in life.
Later!
HemoMom2
Thursday, November 1, 2007
Greetings From NHF Orlando, Florida
Ahoy from Orlando. The Hemophilia Moms team has arrived at the National Hemophilia Foundation's National Convention! We were greeted first with a rain shower then it cleared to beautiful Florida sunshine.
We are here to serve you, help you, inform you and support you in any way that we can. Please come by and see us at the CLS Behring booth #201! We are having a Mom's Brunch tomorrow morning in our hospitality suite from 11:00am to 12:30pm. Come join us as you "Navigate Your Journey."
We are here to serve you, help you, inform you and support you in any way that we can. Please come by and see us at the CLS Behring booth #201! We are having a Mom's Brunch tomorrow morning in our hospitality suite from 11:00am to 12:30pm. Come join us as you "Navigate Your Journey."
Thursday, October 25, 2007
Greetings from New York
Sending my best to all Mom's within the bleeding disorders community. I hope that this blog site provides you with a sense of unity as you communicate with Mom's from across the country. Helping others, helping yourself.
Tuesday, October 9, 2007
Welcome!
Hello everyone! Welcome to Hemophilia Mom's Forum. Please feel free to share your stories, ask questions, or provide useful information. Also, please get the word out to others about this site. Now we have the ability to talk with anyone around the world regarding issues in raising children with bleeding disorders! I'm looking forward to hearing and chatting with all who wish to participate!
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