tag:blogger.com,1999:blog-7915600.post771898612047996832..comments2023-10-29T08:13:44.434-04:00Comments on Micro Preemie Twins: The Story of H & E: GrievingBilliehttp://www.blogger.com/profile/10589229199716201638noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-7915600.post-78185966565941955652007-12-04T13:11:00.000-05:002007-12-04T13:11:00.000-05:00hi, billie-- you post is so well written and so tr...hi, billie-- you post is so well written and so true. i have preemie twins ( 30 weeks gestation) and i really think we all have some degree of PTSD from the birth and NICU experience. your girls are lucky to have you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-75054117182196334912007-12-03T00:01:00.000-05:002007-12-03T00:01:00.000-05:00What a beautiful post, Billie.What a beautiful post, Billie.Stacyhttps://www.blogger.com/profile/05784762797071642899noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-61599982725603223892007-12-01T22:12:00.000-05:002007-12-01T22:12:00.000-05:00As always, I love reading your blog and watching y...As always, I love reading your blog and watching your girls grow. I am not a parent of children with special needs. I am an individual (as I mentioned before) who grew up with a disability (Asperger syndrome). Although my disability is different than those of your girls, most of my struggles have been social and emotional. I will say that I share some of the same emotions you do. My life has been a combination of great joys and great frustrations (often both at the same time.) Accepance is a lifelong process and it was made more difficult for me by years of social rejection by my peers. Overall, I consider myself to be a happy person, probabally about 95% of the time. I wrote this poem at a time I was struggling with my emotions and acceptance of my disability. I believe it would also apply to you and your girls.<BR/><BR/>Am I really going anywhere<BR/><BR/>Or is it an illusion<BR/><BR/>Like standing on a rock on the beach<BR/><BR/>Watching the water flow towards you<BR/><BR/>You feel you’re moving forward<BR/><BR/>But cover no distance at all<BR/><BR/>Or am I like the inchworm<BR/><BR/>Who climbs partway up a vine<BR/><BR/>To be pushed back by the wind<BR/><BR/>To begin its ascent from an earlier point<BR/><BR/>It will reach its destination<BR/><BR/>Much later than expected<BR/><BR/>But still make it<BR/><BR/>Through major progress<BR/><BR/>And major setbacks<BR/><BR/>My dreams remain<BR/><BR/>PS I hope I am fortunate enough become a mother someday and have children and a husband as wonderful as yours.Anonymoushttps://www.blogger.com/profile/14299493731311058061noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-20552818993981176412007-12-01T00:43:00.000-05:002007-12-01T00:43:00.000-05:00Billie, your blog and honest sharing is a huge ble...Billie, your blog and honest sharing is a huge blessing scattering seeds of love and change which will blossom where your lives have been shared. You have a beautiful family and you are making a difference in this world. You are a success! love gma sharon brunetAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-16858058259521794022007-11-30T22:16:00.000-05:002007-11-30T22:16:00.000-05:00i found this blog when i was pregnant. i don't eve...i found this blog when i was pregnant. i don't even remember what my search was that led me here. ruby was born in june, and i still read every entry you write. my baby was not premature. but i am compelled always to check on your girls, to admire your marriage and your parenting, to hate but love holland's dramatic crying, and to hope that my daughter grows up to have a smile like eden's.<BR/>oh, and by the way, i hate blogs. usually.<BR/>thank you and oh my GOD great job, they are beautiful, you are a hero.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-38341073108317085102007-11-30T08:17:00.000-05:002007-11-30T08:17:00.000-05:00Well said, thanks Billie!Well said, thanks Billie!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-42989561025552830532007-11-30T00:37:00.000-05:002007-11-30T00:37:00.000-05:00Beautiful writing, and right on the money as alway...Beautiful writing, and right on the money as always.<BR/><BR/>Personally, nothing bothers me more than the "everything happens for a reason" line. When I hear stories like the Baby Grace abuse case in the news right now, I want to ask them what reason there could possibly be for such suffering? Sometimes, horrible, sad, difficult things happen and there is no reason. Don't feel the need to find one. I'd rather hear you echo my sentiments with the truth: "This sucks. But I'm here to help you deal with it."<BR/><BR/>My only other advice would be to accept that things will change. The grief of dealing with a disabled child changes frequently as they grow. I often find myself thinking I'm over it, or through the worst of it, but then Ethan gets older and his symptoms and issues change, and it's grief anew again. And that's really okay.Metehttps://www.blogger.com/profile/07276808432623125931noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-61072167003037969412007-11-28T16:15:00.000-05:002007-11-28T16:15:00.000-05:00Billie,I have been reading your blog for a while a...Billie,<BR/>I have been reading your blog for a while and love it! I have a daughter who is a 28 weeker and two full term children. That doesn't change the fact that I still grieve her early arrival. I look through their baby boxes of memories and it makes me sad that my daughter's box is full of hospital bands. With that said, my preemie is the happiest of my children. She smiles constantly and enjoys life to the fullest. Your girls are beautiful and look like they love life. There is a difference between survival and living and your girls are living life. <BR/><BR/>Thank you for sharing your honest opinions. You inspire others to do the same. There should be more people in this world like you.<BR/>BethAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-66936824348253004092007-11-27T16:11:00.000-05:002007-11-27T16:11:00.000-05:00Hi Billie,Although I stop by I usually dont commen...Hi Billie,<BR/>Although I stop by I usually dont comment. I have commented before though. Still reading your blog and you inspire me to be a better mom. AND.......you should be applauded for all of you and your husbands hard work over the years. Here's to you, your husband and precious girls!!!!!!<BR/>Shannon in AustinShannonhttps://www.blogger.com/profile/12502975676135226121noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-84433871359235957182007-11-27T16:05:00.000-05:002007-11-27T16:05:00.000-05:00What a great and moving post. Your depth and eloqu...What a great and moving post. Your depth and eloquence never ceases to amaze me.<BR/><BR/>We (parents of micropreemies) grieve in our own way, and we learn from each other too. It's so comforting to know that there are people out there to lean on and who can relate, in some small way, to our own stories. <BR/><BR/>Thanks for being such a great source of support, and one of my biggest cheerleaders. You are quite an amazing person, Billie!Sarah Furloughhttps://www.blogger.com/profile/10930183175998340048noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-26246886652749694092007-11-27T14:38:00.000-05:002007-11-27T14:38:00.000-05:00Billie,I know exactly how you feel. I too greive e...Billie,<BR/>I know exactly how you feel. I too greive every day for what could have been, what should have been and what I will never know. Most days I bounce back easily just by looking into the sparkling eyes of my two beautiful girls. Its when times are tough or when I am around other moms whose kids are younger than mine and have better motor control that it takes a little longer to bounce back. <BR/><BR/>Thank you for posting your true feelings. You often enable me to really understand some of my own feelings.Korrina - Lena and Kassie's Momhttps://www.blogger.com/profile/11392106035956091929noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-84978028128745390262007-11-27T12:54:00.000-05:002007-11-27T12:54:00.000-05:00Wow.Billie, my respect for you, and your parenting...Wow.<BR/>Billie, my respect for you, and your parenting, and your writing grows with each post I read. What a gift to be able to put into words all the thoughts you have in such an understandable, gentle way. I really do appreciate reading posts like this, as they help me understand much of what I am feeling.<BR/><BR/>As has been said, I could have written parts of your essay word for word (not as well, but you get my drift), and feel many of the same things.<BR/><BR/>If I can, the only thing I'd like to add is that while time does tend heal somewhat, I find there are things I am intentionally holding on to in regards to Galen. I find that I value my sadness and grief, as it is part of him, and the memories of him are so very little, every memory means that much more.<BR/><BR/>Thank you Billie.Viscousehttps://www.blogger.com/profile/01440090717648962042noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-53179515083265112932007-11-27T12:10:00.000-05:002007-11-27T12:10:00.000-05:00Every time I read your blog (which is pretty much ...Every time I read your blog (which is pretty much all the time :-) ) I think to myself that you couldn't possibly write a more eloquent post than the one which I just read. And then, of course, you do precisely that. Anyway, you have a knack for touching on what so much of us feel and yet haven't the words for, and I am very grateful for that. <BR/><BR/>Have you ever thought about writing professionally? Just wondering... I'd buy your books (and still read the blog!)abbyhttps://www.blogger.com/profile/03403145277760263562noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-45955046333182880252007-11-27T01:28:00.000-05:002007-11-27T01:28:00.000-05:00How beautifully worded this post is.Eden and Holla...How beautifully worded this post is.<BR/><BR/>Eden and Holland couldn't have better parents.Pattyhttps://www.blogger.com/profile/11678766827436700594noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-45532871756065777512007-11-26T22:48:00.000-05:002007-11-26T22:48:00.000-05:00damnit, you are such a terrific writer. and god b...damnit, you are such a terrific writer. and god bless yr sweet family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-68775249141039910722007-11-26T16:31:00.000-05:002007-11-26T16:31:00.000-05:00Thank you so much for writing this. My daughter C...Thank you so much for writing this. My daughter Caitlyn is 4 and has Rett Syndrome. I often have people tell me it isn't grieving because she isn't dead. She developed normally until she was 15 months when she slow started to lose a lot of skills..The worst comment I ever heard was "At least you had 15 good months with her." To which I reply, "well, actually I have had 4 good years with her! and counting"Rebeccahttps://www.blogger.com/profile/07083975974025991852noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-55313120371730313922007-11-26T16:28:00.000-05:002007-11-26T16:28:00.000-05:00This is a beautiful essay! I can relate to what y...This is a beautiful essay! I can relate to what you said in many ways. (I found your blog via a link recently, and check in from time to time.) I have almost 9-month old twin girls who were born at 29 weeks due to ttts. One was born with a grade IV IVH and has developed severe PVL, an atrophied cerebellum, and microcephaly. She is blind (cvi) and has cp. I have often reflected upon the fact that my feelings are as the stages of grief -- and I realized that this grief is valid because I have lost the typical child I thought she would be. Thank you for your inspirational optimism, example of love toward your children, and willingness to admit sadness and frustration. Your girls are priveleged to have you as their mother.<BR/><BR/>Andrea S.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-35755061429762830012007-11-26T13:38:00.000-05:002007-11-26T13:38:00.000-05:00Billie, I have to say I admire you SO much. Not j...Billie, I have to say I admire you SO much. Not just because I see you as such a gifted, caring person and mother but also because you are so real and not afraid to voice your pain. Thank you so much for sharing this.<BR/>JacolynJacolynhttps://www.blogger.com/profile/14966291460929695590noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-69360681516997381122007-11-26T08:24:00.000-05:002007-11-26T08:24:00.000-05:00WOW! I have just finished reading your blog, in it...WOW! I have just finished reading your blog, in it's entirety...and I just wanted to let you know how awesome and beautiful your whole family is! I really appreciate how honest and open you are about your struggles...they make all of the bright spots just that much brighter! You make me want to be a better Momma:) Thanks!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-77176734504251175892007-11-26T00:52:00.000-05:002007-11-26T00:52:00.000-05:00I am so glad you talked about this, while my Ava w...I am so glad you talked about this, while my Ava was not as premature as your children ( 34 weeker ) she has been diagnosed with Autism Spectrum Disorder, I can relate to a lot of what you go through, and it is most certainly a grieving process. Thank you so much for writing about this. Such an amazing post!Missyhttps://www.blogger.com/profile/16393921593781555274noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-3721294759608764162007-11-26T00:06:00.000-05:002007-11-26T00:06:00.000-05:00Wow you can write well. That was great. I feel ...Wow you can write well. That was great. I feel for you and I'm cheering the girls on (and you and your husband also).carolinagirl79https://www.blogger.com/profile/06284212448110505029noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-58892719475827899092007-11-25T23:33:00.000-05:002007-11-25T23:33:00.000-05:00What a beautiful post Billie! I totally relate to ...What a beautiful post Billie! I totally relate to everything that you said and I know that it is hard for many to help us deal with what our lives consist of. I have come to the conclusion that most of the time, people just don't know what to say. And sometimes saying nothing is better than something.<BR/><BR/>My biggest complaint is that I hear all the time "it could be worse." It is the absolute most awful thing to say to a mother of a special needs child. Yes, it could be worse. But hearing this just makes me think that what I deal with isn't a big deal. What I deal with doesn't matter. Because you know what? Things could be SO much better. That comment just irritates me to the core!!!!<BR/><BR/>Anyhow, I am so glad that I have found such wonderful, understanding moms here in the blog world. It is so great to be able to talk to people that "get it."Shannonhttps://www.blogger.com/profile/04403754584863973889noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-18280647425014319882007-11-25T22:27:00.000-05:002007-11-25T22:27:00.000-05:00Billie, Thank you for writing this post. I konw t...Billie, <BR/>Thank you for writing this post. I konw that you probably really needed it but it is such a wonderful thing for you to acknowledge and validate this loss of ideas. It is a tricky thing for a person to talk about loss when there has not been a death. You are not sure if you even have the right to feel this way and my big hang up- am I allowed to express this feeling of loss when it was my body that failed to do what it was made for. I was "lucky" in that I spent time with a wonderful social worker during a time of loss many years before Ben was born and what she gave me was a simple statement, it's OK. What ever I am feeling is mine and I have every right to feel it. There is no right way to experience loss and no one can undo what you feel. So feel away, it's OK.Shannonhttps://www.blogger.com/profile/03782895993683857172noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-59189941099133953722007-11-25T21:54:00.000-05:002007-11-25T21:54:00.000-05:00Billie, I've just recently found your site and I l...Billie, <BR/><BR/>I've just recently found your site and I love you post of grief. I too grieve daily for the loss of our 'normal' pregnancy, and baby. <BR/><BR/>Our baby Caleigh was born at 28wks & 6 Days, with Gastroschisis, weighing 2lbs 2oz on August 15th of this year. She is still in the NICU with months to go. I grieve everytime I see a mom get to take her baby home from the hospital and this happens daily. I grieve the fact that I wake up at 6am not to feed or cuddle my baby but to get dressed and drive 30 min just to share my baby's time with nurses, doctors and surgeons. Everyday is a grieving process that I hope gets easier as time goes on. <BR/><BR/>Thank you for your courage.<BR/>Holly<BR/><BR/>Caleigh's blog: www.hollydgray.blogspot.comHollyhttps://www.blogger.com/profile/06461570847275489646noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-35927111947308981002007-11-25T21:33:00.000-05:002007-11-25T21:33:00.000-05:00Billie,If you ever need anyone to talk to who feel...Billie,<BR/><BR/>If you ever need anyone to talk to who feels your struggles....feel free to email me. Rebekah is coming over every weekend...so I am kind of a part time caregiver to her...so I know how you feel (partially...Beka would have to be here all the time to have the full experience).<BR/><BR/>email me when you need someone to talk to :)<BR/><BR/>tinkwink92@yahoo.comJenniferhttps://www.blogger.com/profile/05953851095648089488noreply@blogger.com