tag:blogger.com,1999:blog-6498941347207789497.post3353919005342437720..comments2023-07-21T02:18:34.562-07:00Comments on Raising Reid: 31 for T21: Harder Than I Thought....Cherihttp://www.blogger.com/profile/08644571627468626304noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6498941347207789497.post-51785450608504939032010-10-26T23:26:24.319-07:002010-10-26T23:26:24.319-07:00Cheri, I actually loved the movie... but yes, I ha...Cheri, I actually loved the movie... but yes, I had the same worries and thoughts. But just as you, I came to the same conclusion... <br />The Lord has never failed me... He is not here just today to help me, and Presley... He will ALWAYs be here to guide us.<br />If Pres does marry, I just pray it is to another Ds person who has a loving and supportive family like all the ones we have met in blog land. <br /><br />P.S. That song... OMG, did they write that especially for us? So perfect for your ride home, and how kind of the Lord to show you that sign... the one reassuring you He will always be there for Reid and your family, 'simply put your hope in Him'Kelehttps://www.blogger.com/profile/16376303555960065959noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-76670099285514342252010-10-20T18:10:34.793-07:002010-10-20T18:10:34.793-07:00Loved, loved this post. You're so right, thin...Loved, loved this post. You're so right, things aren't as scary now as I imagined!!! And, I certainly hope that's true for the future. <br /><br />Still debating seeing the documentary, but I appreciate your honest opinion of it.<br /><br />And, LOVED the song that you heard on the way home, both times. How inspiring!! <br /><br />Thanks so much for sharingKatiehttps://www.blogger.com/profile/11302354748101566565noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-57542481350175721462010-10-19T15:16:49.675-07:002010-10-19T15:16:49.675-07:00Haven't even heard of the movie here, but have...Haven't even heard of the movie here, but have read lots of blog posts about it, and I think I will seek it out. The future is something I worry about, and try hard not to. Luke gets a child disability allowance over here- about $40 a week. Strange amount, but there it is. We have been putting it aside since Luke was born, as a just in case fund for surgery etc if needed. He now has nearly $6000, which we will use to buy a rental property at some stage, which will pay it's own mortgage, and then we will be able to afford a house for Luke should he wish to live independently. Anyway, just thought I'd share our plan :)Melhttps://www.blogger.com/profile/09066280828048359936noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-23455419589359118002010-10-19T13:23:47.019-07:002010-10-19T13:23:47.019-07:00Cheri, thank you for this honest post. There hasn...Cheri, thank you for this honest post. There hasn't been a whole lot of talk about the documentary in the Ds blogging community, which has surprised me a little. I've been curious how other parents of little ones with Ds reacted to it. I can relate to a lot of your feelings, though some of mine are different. But the movie definitely hit me in a raw, soft spot.Lisahttps://www.blogger.com/profile/07604477175816651214noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-47625298714727422052010-10-19T12:45:43.153-07:002010-10-19T12:45:43.153-07:00“the spot where moms ferociously want to protect t...“the spot where moms ferociously want to protect their children and ferociously want to ensure that their child has every opportunity to live out their dreams.” That spot never fades Cheri, never ever! No matter how old your child or children are. <br /><br />I felt that spot oh so strongly when Cathal’s parents were given the very first diagnosis (the very sick little heart one) and I heard my daughter wail on the other side of the door… this is engrained not only in my heart and in my mind, but in the deepest recesses of my physical being. <br /><br />Yet it is this very spot that makes us good mothers. And I now realise I have that very same spot where Cathal is concerned… I cherish that “spot” ;-)Nan P.https://www.blogger.com/profile/15048214158269327225noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-87213711310843018992010-10-19T11:11:33.023-07:002010-10-19T11:11:33.023-07:00That documentary sure took me some time to process...That documentary sure took me some time to process. I will be posting on it too, hopefully soon! I share your thoughts too, but you are so right, we will make "each stage" work. I also agree with Becca, there are so many more services available to our children know that will help them in being independent. And if they are not, that's OK too. <br /><br />One of the things that I had a tough time with was the lack of understanding what Ds is. It is my hope that Landon will be a self-advocate someday, and he can only do that if he truly knows who he is, inside and out. And I am quite confident that he will.<br /><br />There is some truth to the statement that sometimes it is "us" who places limits on our kiddos. It's tough, but us mama bears always do what's best in the interest of our children.<br /><br />GREAT SONG by the way=)Kellyhttps://www.blogger.com/profile/02643251885429921088noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-64203809999991739822010-10-19T10:25:52.211-07:002010-10-19T10:25:52.211-07:00I just LOVED that song Cheri - thanks so much for ...I just LOVED that song Cheri - thanks so much for sharing it! Brought tears to my eyes as I remember all of the times God has helped me see that he is always with me and that his plans are perfect - not always easy but perfect!<br /><br />I have not seen the documentary yet but I can relate to your feelings about the future. I have high hopes for Joel and sometimes don't even want to think about some of the difficult issues that we will probably face. I know though that God will be there in the future just like he is here in the present now.Heidihttps://www.blogger.com/profile/13884926543146157724noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-82724589089570023742010-10-19T04:57:23.516-07:002010-10-19T04:57:23.516-07:00I had similar thoughts after watching it, but just...I had similar thoughts after watching it, but just keep in mind, that was a different age, many years ago, when parents could do little more than protect their children, and there was little or no structure in place to prepare their children for the real world. I think independence may have come more readily to them had they been born now...Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-18974797237482479862010-10-19T03:33:25.219-07:002010-10-19T03:33:25.219-07:00Cheri, I can SO relate to your feelings about the ...Cheri, I can SO relate to your feelings about the future. My own view of the future moves around a lot depending on the day and my mood. <br /><br />I am torn between my desire to retire to some place exotic and the desire to make sure Jonathan is surrounded by people who know and love him. On our little island, I am always amazed at all the little kids we run into who say Hi to him. He is known and accepted here. How cool would it be for him to be an adult here and continue to be surrounded by this community?<br /><br />Lately I am OK being "stuck" here. I enjoy time with Jonathan so much that being close to him forever (physically and in a support role) doesn't seem like such a bad fate.<br /><br />I haven't seen the movie yet--its on our DVR. I'm not in a hurry to see it because what if it is not "our story." I know some who have ordered Deedah and have put it on the shelf for the same reason. Its tough to describe; we come to peace with our own situation and its hard to muster the energy for another's situation. <br /><br />So we seek the positive in each day.<br /><br />Thanks for letting me prattle on.<br />Phil<br />www.deedahandme.com/blogPhilip Mayhttps://www.blogger.com/profile/05418905229547028020noreply@blogger.comtag:blogger.com,1999:blog-6498941347207789497.post-72307130552778164052010-10-19T00:59:57.428-07:002010-10-19T00:59:57.428-07:00Hi - my name is Nicole and I was turned onto your ...Hi - my name is Nicole and I was turned onto your blog by Erin Moland. I've checked it out a few times and wanted to finally introduce myself. Your kids are adorable! I have enjoyed reading about Reid and your journey these last 4 years. We are only 1 year into our journey but each day gets better and better. Our daughter Annabelle has Spina Bifida and Hydrocephalus. She has had 6 surgeries but is doing very well.<br /><br />I wanted to let you know about a morning of prayer that will be taking place this Wednesday. Here's the link: <br /><br />http://babygirlsummers.blogspot.com/2010/10/spina-bifida-kids-worldwide-day-of.html<br /><br />Although this day of prayer or movement as we are now calling it was inspired because so many unborn babies diagnosed with SB are being aborted, sadly the same could be said for many medical conditions diagnosed in the womb. I hope it's ok that I am passing this information along. I just can tell from your blog that you love Reid and much as I love my Annabelle and the thought of someone opting to not bring them into the world is heartbreaking. <br /><br />On Wednesday morning I will be praying for ALL unborn babies, their mother's and the Dr.'s I hope you will consider joining us.<br /><br />Thank you for sharing your stories on your blog.<br /><br />Nicole<br />Mom to Jack (5), Benjamin (3 1/2) and Annabelle (14 months)Summers Familyhttps://www.blogger.com/profile/17980394958326008387noreply@blogger.com