tag:blogger.com,1999:blog-6811945558877221270.post78242896842934594..comments2024-03-27T21:57:54.772-07:00Comments on A Perfect Extra Chromosome: I Wish My Child Didn't Have Down Syndrome.....A Perfect Extra Chromosomehttp://www.blogger.com/profile/08589374230086756438noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-6811945558877221270.post-54110135046256795302016-07-01T07:37:12.276-07:002016-07-01T07:37:12.276-07:00Hi Dawn....I would love to connect. I'm on Fac...Hi Dawn....I would love to connect. I'm on Facebook...Krista Rowland-Collins or email Krowland23@hotmail.com. Let's chat! I feel you. I get it. XoA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-76729307467461006182016-06-30T20:34:06.193-07:002016-06-30T20:34:06.193-07:00I have a new baby with Down syndrome, and I hate t...I have a new baby with Down syndrome, and I hate the chromosome! She's so gorgeous and strong and already I see her working harder than other babies, learning to breastfeed is still a struggle, she so wants to but her mouth is small and muscles tired. She spent the first 3 weeks of her life in hospital, a big op and so many painful procedures, and we have to give her back for heart surgery in 2-3 weeks time. Who in their right mind would want this? My heart breaks every day whilst it swells with love for this poor child. Of course o want HER, so much I'm terrified of every cry, sniff, rash, and cough - but if I could have her without all this crap, lord yes!!!! dawnhttps://www.blogger.com/profile/15987600678175395464noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-87808550643997611792015-02-27T13:18:00.822-08:002015-02-27T13:18:00.822-08:00Well said Paul. Thank you! What do you do at MedCa...Well said Paul. Thank you! What do you do at MedCare Pediatrics? I looked at the website and it looks great!<br />KristaA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-78740856895660482642015-02-27T13:17:14.953-08:002015-02-27T13:17:14.953-08:00Thank you for your honesty. We need to have these ...Thank you for your honesty. We need to have these moments and share with each other. xo<br />KristaA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-62510726912232348462015-02-27T13:05:42.762-08:002015-02-27T13:05:42.762-08:00It can be hard for any parent to accept the fact t...It can be hard for any parent to accept the fact their children have this kind of condition. Actually, it’s not the condition itself, but those complications that DS might have that's worrying. And I agree, there’s nothing to be embarrassed about having a child with any kind of condition. They are the most precious thing every mother could have. I hope your post could inspire more people, and could set better understanding about DS. <br /><br /><a href="http://www.medcarepediatric.com/" rel="nofollow">Paul Quinn @ MedCare Pediatric</a><br />Paul Quinnhttps://www.blogger.com/profile/15225830347802949099noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-19177556911189564112014-12-21T23:25:26.697-08:002014-12-21T23:25:26.697-08:00Thank you for your honest comments. If I could ta...Thank you for your honest comments. If I could take my baby to pat baby goats at a farm and feed them some hay I would rather do that than take my baby to the hospital and stand in the hall as they take her in for open heart surgery. Heart problems are common for babies with DS. If a parent tries to say they wouldn't change a thing they are not being truthful - that isn't fair to any of their children or the people who support them and their baby. If people aren't honest it just creates problems (like isolation) in the future. Don't try to tell me there is nothing to worry about and my child is perfect in everyway because that isn't supportive or fair.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-8557915437609837142014-10-06T09:21:40.958-07:002014-10-06T09:21:40.958-07:00Oh boo! I hope it was nice. ;)Oh boo! I hope it was nice. ;)A Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-41433309692093892832014-10-06T08:35:39.825-07:002014-10-06T08:35:39.825-07:00I wrote a huge reply and it deleted :( will try ag...I wrote a huge reply and it deleted :( will try again!Mom&1/2of4https://www.blogger.com/profile/15187523691850307758noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-29274795711454658312014-10-03T14:09:50.647-07:002014-10-03T14:09:50.647-07:00It's such a journey with Adele. I get that it ...It's such a journey with Adele. I get that it is also a journey with Brinley, but it's different. There is no lack of love in this house....it's just some days your worries take over and it's difficult when I think about the future. I know that it will work out. Thank you for all of your feedback! Hugs to your little guy. xoxoxA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-42900146324717806062014-10-03T01:54:01.917-07:002014-10-03T01:54:01.917-07:00It's amazing to bravely right with such honest...It's amazing to bravely right with such honesty. You will always have these posts to see how your life shifts and perspectives fly up and down and all around--IF you continue to post with true integrity. Don't be hesitant to not write anything, even if it's notes that you ARE unsure about posting. Keeping parts of your journey to your own or immediate family is allowed too--and deciding to post more of that at a later date is fine. <br /><br />Looking forward to may more posts so full of love. And truth. Do take the journey full of the high highs and sometimes lower lows. You will treasure crying at the milestones and LOVE every one but yes, at times with bittersweetness. Okay usually with that maybe. <br /><br />I often feel like a brand new "babe in the woods" about DS plenty still. My son is six and yes--still learning. Phttps://www.blogger.com/profile/16301340414658686677noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-72739206190533375132014-10-02T10:19:01.152-07:002014-10-02T10:19:01.152-07:00Thanks Maya! You absolutely have the right to shar...Thanks Maya! You absolutely have the right to share your thoughts and feelings. I love Adele beyond measure, it's just certain parts of Ds that I can't stand. It's a journey for all of us. Thank you for sharing your comment. KristaA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-12164083496768935902014-10-02T10:11:27.063-07:002014-10-02T10:11:27.063-07:00I don't have a child with down syndrome so I d...I don't have a child with down syndrome so I don't know if it's for me to say or not, but as a parent, I get it. I mean, if you could choose between pain and suffering or NOT for your kids, what parent wouldn't choose the latter. Thanks for your honesty.Anonymoushttps://www.blogger.com/profile/10943618152748240419noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-17565099662155564112014-10-01T09:20:14.139-07:002014-10-01T09:20:14.139-07:00I ALWAYS look forward to your feedback Jenny. This...I ALWAYS look forward to your feedback Jenny. This one was a bit difficult to write because I didn't want it to be taken the wrong way. I love Adele beyond measure. She is perfect but I don't like all of the crap that comes along with Down syndrome. I love that you let me know how things will go, you are ahead of the game, so hearing what you have to say and that you went through the exact same emotions, brings me comfort. I am going to read your comment many times. Thank you. xoA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-68175030374064582322014-10-01T09:16:41.711-07:002014-10-01T09:16:41.711-07:00Well said! I love how you describe it, plastering ...Well said! I love how you describe it, plastering a smile on our faces and sticking a strawberry on top. That's it!<br />Thank you<br />KristaA Perfect Extra Chromosomehttps://www.blogger.com/profile/08589374230086756438noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-87720341974605001372014-10-01T08:46:50.992-07:002014-10-01T08:46:50.992-07:00Krista....Hands down, best post you have written. ...Krista....Hands down, best post you have written. Your wrote your raw truth. And I think all of us Moms who have kiddos with Ds can relate to this. We have all said the words "I wouldn't change a thing about him/her"...Because we love the very core of who our child is. We accept our child. We see our child as beautiful and perfect.<br /><br />But...<br /><br />Would any of us purposely want for our child to have Down syndrome? Do we want to deal with medical issues? Do we want to do dozens of rounds of Therapies? Do we like to see our children struggle at simple tasks? Do we like having to think and plan ahead for our child's future in a way we don't have to with our other children? No. I don't think any of us want these issues...They can be very trying. Emotionally draining and just hard on the heart to deal with. Who would wish any of this upon themselves or their child?<br /><br />If I could take Ds from my son, I think I would. It is hard for me to watch his struggles. I would want for his little body and mind to work smoothly for him. And at the same time I love him for exactly who he is.<br /><br />I think you will find as you continue on this journey, as Adele grows, your thoughts and opinions on things like this will change often. Russell is almost five and I still go back and forth with how I feel. What I write now is different than what I have written in years past. It's a journey of growth.<br /><br />I'm proud of you Krista. You are the most amazing advocate for your daughter. Never be afraid to share what you feel because there are so many of us out here that can relate. xoJChttps://www.blogger.com/profile/16040699928110444013noreply@blogger.comtag:blogger.com,1999:blog-6811945558877221270.post-43778227284773316332014-09-30T23:00:56.228-07:002014-09-30T23:00:56.228-07:00I think we all wish that, it's just that we ha...I think we all wish that, it's just that we have entered some strange twilight zone wherein we have to deny some of our experience to make others more comfortable, society is still very uncomfortable with our children and it causes us to have to find strange ways of coping and I think maybe one is this denial..it has us plastering a smile on our faces and sticking a strawberry on top of the whole situation.. it's also strange and sick that our children are described as either angels from heaven or burdens which should have been terminated.. no middle ground.. Anonymousnoreply@blogger.com