Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi Helen- Thank you so much for the message. We too have that anniversary coming up... 5 years on July 15. And things have turned bad again so quickly. No sooner had we mentioned a possible remission than a 180 turn came. The depondency had laid on me like a heavy, dirty wet mongrel....it felt a bit like we had just climbed out of the mud, showered up, dressed and perfumed up... on our way out the door and somebody said " Sorry - time to get back in the mud... " . BUT.... the moments come like the second part of your message... and God graces me with the ability to see the brighter side and focus on the brilliance of my child. Despite all of the challenges and frustrations, she shines on and on and on And we have the hope that the health of the last six months brought.... there will be more light and good days ahead... and always a twinkle somewhere to be found during the dark times. Thank you for the lift up my friend..... Best hopes for - Colleen (mom to Caitlin, 8, systemic) hburger64 <hburger64@...> wrote: It was 3 years ago today that Nick and I walked into a rheumatologists office for the 1st time and walked out with a dx of probable systemic onset JRA. Although Nick had been sick for the previous 3 months and we suspected this, it was still devestating news. Its hard to imagine sometimes what life was like pre- dx. Nick was just 1/2 way though his kindergarten year with his whole school life ahead of him. Now life is filled with medications, shots, infusions, blood tests, hospital and doctor visits. But though it all Nick has not changed. He deals with each day as it comes. He is still the fisty, stubborn, fun loving kid he always was. He has grown stronger, he rolls with the punches and faces the challenges with the fortitude of most adults. I have grown stronger too. I have learnt to advocate for my child. I have learnt not to take anything for granted. Nick has taught me many life lessons. Although we are walking down a different path than the one we dreamed of, this one has its silver linings too. We have crossed paths with people that we otherwise would never have met, people I like to call my friends, people who mean a lot to us. I know whatever hand we are dealt, we will deal with it together and move forward. Theres no stopping this kid and he will succeed in anything he puts his mind to. , my hero, my son. hugs Helen and (8,systemic) --------------------------------- Sports Fantasy Football ’06 - Go with the leader. Start your league today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Helen: Your words really moved me. I have said this before, but I will say it again. I am so glad this list exists and that Hannah and I have found all of you. While most of you are well into your journeys, I feel like like our family is at the start. We have our itinerary, but we are still in the packing phase. We just don't know what to bring along for our journey just yet. We don't know our final destination, but we have researched the weather and feel prepared for whatever comes our way. Everyone here is extremely supportive and always ready to share their experiences. I wish you did not have this kind of anniversary. Yet you are right about this making you stronger. Our kids are amazing and so are all of you. God Bless. hburger64 <hburger64@...> wrote: It was 3 years ago today that Nick and I walked into a rheumatologists office for the 1st time and walked out with a dx of probable systemic onset JRA. Although Nick had been sick for the previous 3 months and we suspected this, it was still devestating news. Its hard to imagine sometimes what life was like pre- dx. Nick was just 1/2 way though his kindergarten year with his whole school life ahead of him. Now life is filled with medications, shots, infusions, blood tests, hospital and doctor visits. But though it all Nick has not changed. He deals with each day as it comes. He is still the fisty, stubborn, fun loving kid he always was. He has grown stronger, he rolls with the punches and faces the challenges with the fortitude of most adults. I have grown stronger too. I have learnt to advocate for my child. I have learnt not to take anything for granted. Nick has taught me many life lessons. Although we are walking down a different path than the one we dreamed of, this one has its silver linings too. We have crossed paths with people that we otherwise would never have met, people I like to call my friends, people who mean a lot to us. I know whatever hand we are dealt, we will deal with it together and move forward. Theres no stopping this kid and he will succeed in anything he puts his mind to. , my hero, my son. hugs Helen and (8,systemic) Beth Yohnk Happy Thoughts..Be Well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 -Colleen. It breaks my heart to read that Caitlin is struggling again. I was really hoping and praying that her remission would be long and uneventful. I really felt that you had won a battle, if not the war. Whats going on??? what treatments are you trying this time. I can understand how frustating this must be, but remember that she had 6 fantastic months once and can again!! Stay positive and keeo the faith. We are here for you. hugs Helen and (8,systemic) -- In , Colleen <bookissmom@...> wrote: > > Hi Helen- > > Thank you so much for the message. We too have that anniversary coming up... 5 years on July 15. And things have turned bad again so quickly. No sooner had we mentioned a possible remission than a 180 turn came. The depondency had laid on me like a heavy, dirty wet mongrel....it felt a bit like we had just climbed out of the mud, showered up, dressed and perfumed up... on our way out the door and somebody said " Sorry - time to get back in the mud... " . > > BUT.... the moments come like the second part of your message... and God graces me with the ability to see the brighter side and focus on the brilliance of my child. Despite all of the challenges and frustrations, she shines on and on and on And we have the hope that the health of the last six months brought.... there will be more light and good days ahead... and always a twinkle somewhere to be found during the dark times. > > Thank you for the lift up my friend..... > Best hopes for - > > Colleen (mom to Caitlin, 8, systemic) > > hburger64 <hburger64@...> wrote: It was 3 years ago today that Nick and I walked into a > rheumatologists office for the 1st time and walked out with a dx of > probable systemic onset JRA. Although Nick had been sick for the > previous 3 months and we suspected this, it was still devestating > news. > > Its hard to imagine sometimes what life was like pre- dx. Nick was > just 1/2 way though his kindergarten year with his whole school life > ahead of him. Now life is filled with medications, shots, infusions, > blood tests, hospital and doctor visits. > > But though it all Nick has not changed. He deals with each day as it > comes. He is still the fisty, stubborn, fun loving kid he always > was. He has grown stronger, he rolls with the punches and faces the > challenges with the fortitude of most adults. > > I have grown stronger too. I have learnt to advocate for my child. I > have learnt not to take anything for granted. Nick has taught me > many life lessons. Although we are walking down a different path > than the one we dreamed of, this one has its silver linings too. We > have crossed paths with people that we otherwise would never have > met, people I like to call my friends, people who mean a lot to us. > > I know whatever hand we are dealt, we will deal with it together and > move forward. Theres no stopping this kid and he will succeed in > anything he puts his mind to. > > , my hero, my son. > > hugs Helen and (8,systemic) > > > > > > > --------------------------------- > Sports Fantasy Football '06 - Go with the leader. Start your league today! > > Quote Link to comment Share on other sites More sharing options...
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