We purchased a VAN in April 2019!!!!!

     I apologize for the delay in this post. We did a Facebook live for the video reveal thinking it would be easy to share to other places and it was not. I had to learn some tech stuff to get it done and totally forgot to post in the learning process but here we are now yay!!! Please forgive the delay!

                                            

     Finally we were able to find and purchase a handicap van! It’’s a 2010 Chrysler Town and Country Limited handicap van. It has the side ramp and drivers seat like we needed. We and our friends, family, and a sales person literally have looked all over the US for this van and we finally found it in Ohio. It also has many features on the van that were important to us like a back up camera for Dave since he has limited mobility in his neck. We picked it up  and have been in awe ever since. Dave and I often say we are living the dream as many things we thought would never happen are happening in our lives. Well this is one of them. 

     We want to thank our Good Good Father God, our family, friends, spiritual family, HelpHopeLive.org Worthwhile Life Foundation, and anonymous. We are overwhelmed  with your generosity and feel the love! Thank you, thank you, thank you for making a huge positive impact in our lives! 

     If you wish to give to Dave’s Help Hope Live or Stable account to help with unpaid medical bills, medical expenses such a power for his manual wheelchair that we are looking into, house repairs, van repairs, things to help with Daves life. Please contact me for the Stable account info which gifts can help us travel to things like hpp meetings to help us manage Dave’s diagnosis best.  Contact me if you have questions. Many thanks again to all who gave, shared, liked, and commented. We can’t thank you enough! <3

     

                                   La Jolla Soft Bones National Meeting 

                                           

                                                        Ready to fly to California! 

    How do you describe a rare disease patient meeting? Well, I had the opportunity to write a blog post on it two years ago (link here) and have found that it is always difficult to sum up the whole experience. As my husband Dave and I return from our third national meeting once again I am pondering what to tell others about the bond between hpp patients, families, loved ones and caregivers.

                                               

 Our friend Sue. I have learned so much from her about hpp! 

     They say when you find your tribe (community, family) to love them hard. We are doing the best we can to walk that out step by step and day by day. When we watch new patients at meetings we are delighted to connect, listen to their stories and answer any questions they have. They say everyone needs to be fully loved and fully known. I think that’s a huge part of it. They feel more fully known. We feel more fully known. Others who we sit across the table from hear us and say yes that’s how I feel too! Do you know that I’ve come to fully realize? Knowing and understanding why there is pain, why there is difficulty, and what can be done about it is validating and empowering as well as comforting! We may not understand the whys of everything but understanding one or more new facets about your diagnosis can be a comfort. I’m not crazy, it’s not all in my head, there is a reason why I am experiencing this. Then if there is treatment you can hear about and see others that are on treatment and those who are not, weigh out the benefits and risks to make an informed decision about your available options. These moments remind me of a quote from a favorite show of mine, Call the Midwife:

                                                “None of us have ever truly walked this way before

                                                 But if there is no map, no route, no arrowhead to follow

                                                 There is sometimes a star.

                                                 An we do not make our way without companions

                                                 As the road unfolds, we travel side by side

                                                 And share the shift from darkness into light”

     

                                                    Our friend Sally and I on break! She's a gem!

     There is also laughter! Laughter over the things that only a person with your flavor of rare would get. These are your people, family, community, and they really do give you with a sense of belonging. These are the people you talk with when your doctor does not know what to do, the medical professionals don’t know what to do. Often times only you and your inner circle know the hell you’ve been through and yet you meet people who get it when coming to these meetings. 

      Many sacrifice their money to make that one trip, pain in their bodies, perhaps risk a fracture to make that connection, get that education, and be empowered to advocate for yourself and others in your community. Forever changed, never the same, and encouraged to grow to your full potential. Do it afraid, go to a meeting, make the connections, be vulnerable and tell your story, fuel your tank for the journey. It’s not a sprint it’s a marathon. Pace yourself, and keep this quote in your heart:

“Sometimes life is shattered in an instant and all our certainties are savagely stripped away. Questions become our weapons, answers are our only hope. Without them fear engulfs us. Love and each other can be all we have

Love can not always save us but it can be the reason we fight 

Then love becomes the wound that bleeds the space to be filled 

The emptiness that echoes into silence”

-Call the Midwife

                                                           Copyright SHARONNMYLIFE  INC 2019 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

                                              Happy Mother's Day Naomi!

      My Mom is an amazing mother and I wish her a happy Mothers day today but this blog entry is about my Mother-in-law or what some call their Mother-in-love now.
     I met her a little less than a year before I married my husband and she was so kind to me. I believe she knew that her days with her son single were numbered and she treasured every moment with him that she could. I didn’t understand that at the time, but as time has rolled on and I have matured and understand a little more of life and my husband’s story, it’s starting to all make sense.
     Naomi Mullins Talkington was one brave woman. She was strong, courageous, loving and a fighter when it came to getting the medical care for her son that she desperately loved, my future husband. I can’t thank her enough! I don’t know the full story but in the last few years a few more pieces of the puzzle began to unfurl as treatment for hpp was approved and we began a journey to find out could adults get this treatment? What would it take to get this treatment?
                                   

                                                                   Dave's Amazing Mom Naomi!
                                               
     Soon we found out that it would take proof that you had hpp as a child prior to age 18 years old. Well at first I thought we don’t have anything like that as my husband’s pediatric records were destroyed before we could request them shortly after we were married. We were young and Naomi encouraged us to call and get them and they said they were gone. The whole office records had been destroyed. We were disappointed but had no idea what relevance it could be in the future such as we began to realize in the fall of 2015.
Then I remembered something. After Naomi passed my sister in law, who is a nurse, handed me a box. She had graciously done some initial sorting of things in the house, since we lived out of town, and said these were some of David’s things.I can’t thank her enough for keeping these things and passing them onto us! Honesty they were still in the box and I thought “where is that box?” We had moved several times and it is nothing short of a miracle that we still had it!
    
      I found the box and began to go through it. From his birth announcement, where it listed his very small weight and her reassurance that he would be fine, to cards welcoming him as a baby it was there in the box. Then there were the letters she had written to doctors and doctors had written back to her. Before the internet in a time were very little was known this mother was leaving no stone unturned to help her child receive the best of care as far as she could see and find! She was writing researchers that were on the front lines of hypophosphatasia and how do we treat it. Her tenacity was persistent and she was resilient and firm in what they could do and what boundaries she drew to care for her precious son. She was a trailblazer in advocacy and the letters and documents she so preciously saved I don’t think she ever dreamed they would be an inheritance key to lead to treatment for her precious son once she was long gone.
So today I honor my mother in love for saving my husbands life and health through her foresight to connect and correspond with some of the leading doctors and researchers of his childhood! Happy Mothers Day in heaven Naomi! I love you!
     
                                    Copyright SHARONNMYLIFE  INC 2019 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.