tag:blogger.com,1999:blog-3899811813828857211.comments2024-03-14T11:04:37.076-07:00Sonya's Story A Journey Through CDKL5R. Zailahttp://www.blogger.com/profile/09869091452888159711noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-3899811813828857211.post-23878006261923924482021-06-06T16:49:37.218-07:002021-06-06T16:49:37.218-07:00Ignore people who have the privilege of not unders...Ignore people who have the privilege of not understanding that when a parent loses a child, a hole in their heart will always be there. My mother passed away when I was 14. Her mother, my grandmother, lived to be 99 with a totally clear mind. I know that hole was still present when she was 99 because we talked about my mother from time to time. I had a hole in my heart too but it was quite clear to me, even at a young age, that when a parent loses a child, the hole is larger and present for the rest of their lives. She was happy, life went on, but she always missed her child. Gaylehttps://www.blogger.com/profile/16707942537642384677noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-74042785626943316202020-04-29T19:42:33.135-07:002020-04-29T19:42:33.135-07:00I am praying for you. My personal, unsolicited opi...I am praying for you. My personal, unsolicited opinion is that it is part of the journey. Painful, but normal. All forms of mourning are normal, because it’s our physical and emotional reaction to something that is completely unnatural. Losing a loved one. Death is unnatural because we were created to live, not die. So we react how we react and that’s ok. I commend you for your strength to put your feelings into words as best as you can. So many people likely feel the same exact way and will benefit greatly. I know that your family benefits as well when you are able to express your feelings so that you can be available to them. What an incredible human you are. One day, the injustice of sin will be reversed and you will see Sonzee again. You will cuddle up with her and she will snuggle you right back. I pray for that day. Nakiahttps://www.blogger.com/profile/14603417701822037021noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-79946525679900821322020-04-29T19:42:06.123-07:002020-04-29T19:42:06.123-07:00I am praying for you. My personal, unsolicited opi...I am praying for you. My personal, unsolicited opinion is that it is part of the journey. Painful, but normal. All forms of mourning are normal, because it’s our physical and emotional reaction to something that is completely unnatural. Losing a loved one. Death is unnatural because we were created to live, not die. So we react how we react and that’s ok. I commend you for your strength to put your feelings into words as best as you can. So many people likely feel the same exact way and will benefit greatly. I know that your family benefits as well when you are able to express your feelings so that you can be available to them. What an incredible human you are. One day, the injustice of sin will be reversed and you will see Sonzee again. You will cuddle up with her and she will snuggle you right back. I pray for that day. Nakiahttps://www.blogger.com/profile/14603417701822037021noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-84304515648611110452020-04-27T23:34:27.924-07:002020-04-27T23:34:27.924-07:00My husband is a serious bird watcher. We have two ...My husband is a serious bird watcher. We have two hummingbird feeders near the house and I almost always see a hummingbird within a few minutes as I look out the window. If you want suggestions on what type to buy, we can tell you which set up avoids the bees. I plant the flowers and tending them does bring me some peace but, thank goodness for irrigation or I’m sure they wouldn’t last long in the heat! Gaylehttps://www.blogger.com/profile/16707942537642384677noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-88999364171053800342020-03-16T11:50:19.998-07:002020-03-16T11:50:19.998-07:00How about some validation that you raised your kid...How about some validation that you raised your kids with love? Good job Mom<br />Anonymoushttps://www.blogger.com/profile/17914743099936343774noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-73106416391991079432020-03-04T14:28:05.914-08:002020-03-04T14:28:05.914-08:00That such a story is written...sorrowful but rejoi...That such a story is written...sorrowful but rejoicing. 💙Beth Annehttps://www.blogger.com/profile/14267193103356488548noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-12769023797386473482020-02-12T23:24:10.753-08:002020-02-12T23:24:10.753-08:00Very touching. Your words are very dear, I think e...Very touching. Your words are very dear, I think everyone who reads this feels your pain, in a certain way, of your loss. <br />You and Sam endured a lot of pain & heartache & mental anguish but as you say Randy, you feel comforted that Sonya (Sonzee) has found her way home. Happy birthday ������ Sonya and we will all miss you and love you.<br />Hashem has a plan for us all yet, we don't understand His plans totally.<br />You made a big impact on all of our lives.<br />Your Ema & Abba did their best and l hope somehow, they will realize that and not feel guilty in any way.<br />May your beautiful Nashamah have an Aliyah and Hashem greet you in His Palace now and bring you and all of our loved ones back with Moshiach now. <br />I get very emotional and sensitive in any of these situations but l have to talk from my heart.<br />Sorry if this is too long. Anonymoushttps://www.blogger.com/profile/11131542534117536637noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-77883118347179828312020-02-12T23:04:03.734-08:002020-02-12T23:04:03.734-08:00Very touching. Your words are very dear, I think e...Very touching. Your words are very dear, I think everyone who reads this feels your pain, in a certain way, of your loss. <br />You and Sam endured a lot of pain & heartache & mental anguish but as you say Randy, you feel comforted that Sonya (Sonzee) has found her way home. Happy birthday 🎂🎉🎈 Sonya and we will all miss you and love you.<br />Hashem has a plan for us all yet, we don't understand His plans totally.<br />You made a big impact on all of our lives.<br />Your Email & Abba did their best and l hope somehow, they will realize that and not feel guilty in any way.<br />May your beautiful Nashamah have an Aliyah and Hashem greet your into His Palace now and bring you and all of our loved ones back with Moshiach now. <br />I get very emotional and sensitive in any of these situations but l have to talk from my heart.<br />Sorry if this is too long. Anonymoushttps://www.blogger.com/profile/11131542534117536637noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-3660362407193470382020-02-12T10:25:39.268-08:002020-02-12T10:25:39.268-08:00Oh my Randi... I haven't written because there...Oh my Randi... I haven't written because there are no words. May you be granted the strength you need (though it seems sonzee has been sending some your way❤️) you have made us a part of your journey and I'm grateful for all the lessons I've learned along the way. So zee, keep shining your light, you've changed so many lives! Happiest birthday ❤️🎉Sarahttps://www.blogger.com/profile/06779992668391036891noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-35500435364913341052020-02-10T08:40:40.651-08:002020-02-10T08:40:40.651-08:00Sonzee continues in the form of pure joy, pure har...Sonzee continues in the form of pure joy, pure harmony, pure peace, and pure love. I pray you feel her presence often. At my calmest, I feel Sorrel.<br />Anonymoushttps://www.blogger.com/profile/16761048275388011280noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-48413896015379238972020-01-30T17:47:43.196-08:002020-01-30T17:47:43.196-08:00There is nothing to say. Know in your hearts that ...There is nothing to say. Know in your hearts that you championed her and obtained the best for Sonzee Bear. You are the best parents she could have wished for and is so lucky to have had such a loving family and extended family. The pain is not imaginable for anyone who has not walked in your shoes. I pray that no one ever has to follow your footsteps. You all are heroes to thousands and someday, you will gain some healing by knowing you did all you could do and you did it all in what you hoped was the best for your lovely daughter. We are here for you. I know that your lovely community is surrounding you, but it is so hard for those of us further away. You have all of our love. Harriet.<br />Anonymoushttps://www.blogger.com/profile/17914743099936343774noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-14516241569461751122020-01-29T14:51:16.097-08:002020-01-29T14:51:16.097-08:00Sunday was the anniversary of losing Sorrel. I was...Sunday was the anniversary of losing Sorrel. I was with someone who has only known me for a year. She knew I was sad and began a litany of platitudes. Sorrel came to teach you, she brought you and your daughter close, she was only meant to be here a short time. I sat thinking she was giving me all the "head" answers and what was hurting was my heart. Please know I have been praying for you and your precious Sonzee. Now my heart aches for her and for you.<br /><br />Anonymoushttps://www.blogger.com/profile/16761048275388011280noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-82108898705918716752020-01-29T08:59:44.932-08:002020-01-29T08:59:44.932-08:00Querida mamá; no sé que decir para aliviar tu dolo...Querida mamá; no sé que decir para aliviar tu dolor, no hay algo más triste que ver sufrir a nuestros hijos, soy mamá de tres, La mayor de 5 años Valentina presenta Cdkl5, y puedo imaginar lo difícil que son nuestros días, pero Dios nos da una fuerza increíble. Un abrazo grande y cariños al osito hermoso.María Elenahttps://www.blogger.com/profile/09983479107432424291noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-65113925161928862942020-01-27T17:56:30.251-08:002020-01-27T17:56:30.251-08:00Love to your family. Endure. Hold your family clos...Love to your family. Endure. Hold your family close. ��Beth Annehttps://www.blogger.com/profile/14267193103356488548noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-24659913217461994562019-11-12T16:40:02.958-08:002019-11-12T16:40:02.958-08:00You love her. That is all there is. You are such g...You love her. That is all there is. You are such great and loving parents. Your snuggles, kisses, loving touch and whispered words of encouragement. Your prayers will get her through whatever it is she has to face. I sure love her.Janiebelle007https://www.blogger.com/profile/11658191558248051555noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-64585919465359312672019-11-04T16:37:52.294-08:002019-11-04T16:37:52.294-08:00Whenever I read your story it always seems to be o...Whenever I read your story it always seems to be one of those that totally wash over me and my heart just bursts. I was just thinking about Sonzee last week because I hadn't seen anything from you I in a while. I start to get concerned. So today I was happy to see your post. And then I cried....Although I can never begin to know how you manage but your words are just enough to give me a very small peek and I am totally an emotional mess. I hope and pray that her 5th Birthday does indeed happen for you and Sonzee. Just know that there are many people who silently think, wonder and pray all the time for your entire family. My love, admiration and prayers are always with all of you.BarbS.https://www.blogger.com/profile/01490700422133556312noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-27099508522163075422019-08-26T11:43:52.161-07:002019-08-26T11:43:52.161-07:00I agree, no parent of a medically complex child sh...I agree, no parent of a medically complex child should be trying to define “giving up”. I think the focus is always getting your child the very best quality of life possible. I have never seen a parent of a medically complex child want anything different. That includes end of life decisions sometimes, that choice also is made considering the child’s quality of life. ALL of the decisions made by parents of medically complex children are difficult and carefully weighed out and others need to know and respect them. We can ask questions or share ideas but it is the parent who agonizes over the decisions. Gaylehttps://www.blogger.com/profile/16707942537642384677noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-75384585981441085702019-04-05T11:27:23.421-07:002019-04-05T11:27:23.421-07:00<3...Thank you Beth!<3...Thank you Beth!R. Zailahttps://www.blogger.com/profile/09869091452888159711noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-29124318836544575772019-04-04T05:46:04.602-07:002019-04-04T05:46:04.602-07:00On the positive side. My oldest became a combat me...On the positive side. My oldest became a combat medic and then a Houston police officer. My second became a nurse practitioner here in Phoenix. They were 4 & 6 when we had a CMV baby. We embrace each difficult day. We cry. We rejoice. We love.💙Beth Bluehttps://www.blogger.com/profile/10061695483502173606noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-84776812426061189342015-05-26T11:17:59.187-07:002015-05-26T11:17:59.187-07:00Very powerful post. Very powerful post. Anonymoushttps://www.blogger.com/profile/15228387157007744535noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-39177822642528265082015-05-25T23:37:41.539-07:002015-05-25T23:37:41.539-07:00Yay Sonya!Yay Sonya!Holly Fosterhttp://www.buggyshady.comnoreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-69267457322034690452015-05-11T13:35:43.983-07:002015-05-11T13:35:43.983-07:00Randi,
We also love how much we are all learning ...Randi, <br />We also love how much we are all learning every day from your strength, your positive attitude, your trust and love of Hashem. You are our daily inspiration. Thank you Randi and Sonya for sharing these very special moments and lessons of life. Only situations like these make you understand how precious everything is. Love you Randi. Sonya is lucky to have a mom like you. She is blessed!!!Anonymoushttps://www.blogger.com/profile/16414464832819978819noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-17801452377723456102015-04-23T18:32:45.292-07:002015-04-23T18:32:45.292-07:00This is so heartbreaking! We have a son who was di...This is so heartbreaking! We have a son who was diagnosed in his teens with an "incurable" degenerative neurological disorder, similar to what your little Sonya has. It was devastating to see professor after professor throw up their hands while handing down the same death sentence! I wouldn't accept their verdict and decided to find the answer on my own. It took me six months of 24/7 research but Baruch Hashem - I found my answer: My boy has a type of inborn error of metabolism which affects the way the body synthesizes vitamin B12. Seems so simple, doesn't it? Believe me, despite the evidence I brought which cast serious doubts on their diagnosis, not a single doctor was willing to discuss a differential! Med schools churn out MDs who've been trained to absorb enormous amounts of medical "facts" and information - often at the expense of their own seichel (and simple COMMON SENSE!) The same is true of the medical establishment's biased view of anything that smacks of "alternative medicine" - even if hundreds of thousands of patients have been successfully treated with a certain remedy for decades - if there's no "clinical trail" to substantiate it, it must be bogus. <br />Please go to www.honestmedicine.com and read how low dose naltrexone has been used by "alternative" and mainstream doctors for over 20 years as a safe, effective CURE for a long list of otherwise "incurable" autoimmune and degenerative diseases like Parkinson's, fibromyalgia, autism AND Sonya's childhood epilepsy! רפואה שלימהAnonymoushttps://www.blogger.com/profile/00306682017496855637noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-51518706954084322952015-04-23T04:08:32.159-07:002015-04-23T04:08:32.159-07:00What a great blog today! So true. Sonya is Sonya ...What a great blog today! So true. Sonya is Sonya and we love her for just being herself!Jan Traubhttps://www.blogger.com/profile/13172936563438921489noreply@blogger.comtag:blogger.com,1999:blog-3899811813828857211.post-90716767737696662702015-04-22T04:05:48.646-07:002015-04-22T04:05:48.646-07:00We are so excited to see what Sonya keeps accompli...We are so excited to see what Sonya keeps accomplishing!Jan Traubhttps://www.blogger.com/profile/13172936563438921489noreply@blogger.com