tag:blogger.com,1999:blog-84301802024-03-08T16:50:06.703-05:00p.sunshinesnippets from the life of one quirky mixed-up mommapattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.comBlogger204125tag:blogger.com,1999:blog-8430180.post-85031786594000684372011-03-11T14:00:00.001-05:002011-03-11T14:10:15.781-05:00Inspiration...move me brightlyInspiration can hit us at the most odd times. For me it would be 2AM last night. I stayed up all night reading <a href="http://www.notsobrightandshiny.blogspot.com/">Sarah Jones' blog</a> . I read it from the beginning and ended up crying harder and deeper than I ever remember doing in my life. The emotional outpouring was triggered by sadness for Sarah and her family, but then turned into feelings of guilt, despair, anger, and regret. Sarah's openhearted writing not only made me realize what her family has been through, but forced me to finally stop denying that the disease which my son has could ultimately end his life in the same way. <br />
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I feel so guilty that I have taken for granted that Hayden is "doing well" now and that I have not taken advantage of every moment we have together. As a fulltime-work-away-from-home mom and now with Hayden in Kindergarten most days, my time with him is limited. So why, why do I go home and let exhaustion from MY day get in the way of playing with my son? I do not know how much longer he has on Earth. And the fact of the matter is he is not doing great. Cystic Fibrosis is a Progressive disease. It gets progressively WORSE. I have been in denial of Hayden's progression just because he hasn't had frequent hospital visits. This does not mean that he hasn't progressed. He has tested positive for Psuedomonas at every clinc (except the last one) for over a year now. That is worse. He has a G-Tube now. That is worse. He has a daily cough. That is worse. He tires easily during physical activities, even just walking. That is worse. It's so easy to make excuses and be in denial. My eyes have finally been opened.<br />
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Today I made a promise to myself and my sons (my other son, Riley has ADHD) that I will not let my tiredness at the end of the day or on the weekends get in the way of spending time enjoying my sons' lives and giving them the best life possible. If I have to, I will buy a coffee maker (since I gave up Diet Coke) I will get up in the morning and do jumping jacks. I will do whatever it takes to be there and be active in their lives. Simply telling my sons that I love them is showing them words. I need to act, so they can FEEL how much I love them. Yes, they fight and they use potty talk and they drive me nuts, but my life is so much better because they are in it. Perhaps if I engage them in more play, they will fight less and use more approproate language, maybe not. I am lucky that they are still here, and I need to take advantage of that. <br />
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So my friends, I love you all like you are family of course, but if I turn down invitations, please don't take it personally. My main priority needs to be my main family. I have been so selfish and I am so angry with myself and so filled with regret that I have already wasted some good years worrying about when my free time would come. I can have that later. For now I need to bury myself in love-as much as I can for as long as I can.pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com1tag:blogger.com,1999:blog-8430180.post-29643211796900986632011-02-24T10:59:00.000-05:002011-02-24T10:59:40.407-05:00Hayden's Wish is granted!Here are a couple write-ups about our wonderful trip to Walt Disney World - which was entirely planned and paid for by Kids Wish Network. If you have some donation dollars burning a hole in your pocket, I highly suggest you deposit them at KWN - it will make someone's life so much brighter :)<br />
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<a href="http://www.pr.com/press-release/300563">Here is the article from KWN</a><br />
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<a href="http://kidswishnetwork.org/wishes/">Here is a link to the KWN website</a><br />
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<a href="http://www.mlive.com/a2z/index.ssf/2011/02/childrens_charity_funds_disney_world_trip_for_grand_rapids_family.html">here is a write-up from the Grand rapids Press</a>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-81722075308248849202011-02-11T15:54:00.000-05:002011-02-11T15:54:09.196-05:00this is addicting<a href="http://www.etsy.com/treasury/4d55a15acc7d8eef1581fcd6/engines-are-revving">click here to see the fire engine inspired treasury!</a>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-45404613859957400142011-02-11T15:07:00.001-05:002011-02-11T15:09:59.923-05:00My first etsy treasury !<a href="http://www.etsy.com/treasury/4d55958e18456d9114d544c6/smooth-and-serene">please click here to check it out :)</a>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-19131456760092007722011-02-02T20:03:00.000-05:002011-02-02T20:03:31.911-05:00Disney2011 - a set on Flickr<a href="http://www.flickr.com/photos/pattisunshine/sets/72157625964746160/">Disney2011 - a set on Flickr</a> Thanks to Kids Wish Network, our family was sent on a lovely trip to Disney :)pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-57696637512850491282011-01-21T13:12:00.001-05:002011-01-21T13:12:19.278-05:00It's Derby Time!!!<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/its_derby_time/set?id=27347118'><img alt='It's Derby Time!!!' title='It's Derby Time!!!' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFmxzcTVfWWtsNEJHc0FUUGZCNGhrVFEAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/its_derby_time/set?id=27347118'>It's Derby Time!!!</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/indigo_jeans/shop?query=indigo+jeans'>indigo jeans</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-18599811996605896502011-01-09T00:56:00.001-05:002011-01-09T00:56:09.393-05:00sherpa chic<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/sherpa_chic/set?id=26886998'><img alt='sherpa chic' title='sherpa chic' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFmdFRnhKTFViNEJHU0hQNTNoV1ExcVEAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/sherpa_chic/set?id=26886998'>sherpa chic</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/trapper_hats/shop?query=trapper+hats'>trapper hats</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-75173463038137584842010-12-31T23:20:00.001-05:002010-12-31T23:20:28.664-05:00New Year Cheer<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/new_year_cheer/set?id=26599666'><img alt='New Year Cheer' title='New Year Cheer' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFkdEaGpkRjRWNEJHNUFFeFF4V09IWlEAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/new_year_cheer/set?id=26599666'>New Year Cheer</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/gold_heels/shop?query=gold+heels'>gold heels</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-18429637068837473192010-12-16T13:20:00.003-05:002010-12-16T13:37:06.200-05:00Thankful Thursday<span style="color:#cc0000;">An online friend of mine, Ronnie "Sickboy" Sharpe, suggested that we all take a time out during this crazy Holiday season to reflect on a few things for which we are thankful. Listed below is my contribution:</span><br /><br />1. I am thankful to Ronnie and his stunning new wife, Mandi for creating a huge forum for those of us who are linked to the CF community - It wasn't long ago that I would do an internet search for CF and come up with just short of nothing - nowadays I have a HUGE access to the CF community- new friends to be made, experiences and pictures, progresses and fears to share . Thanks Rondi!<br /><br />2. I am thankful for the new Helen DeVos Children's Hospital in Grand Rapids, MI<br /><br />3. I am thankful that our landlord had the heart tolet us rent her house even though we have 2 cats and she hates cats! Also that our house is within walking distance to stores, exercise paths, an aquatic center, a theatre/art gallery and a Thai food restaurant (yes, and a Hot N Ready Little Ceasar's - but don't tell anyone I actually go there)<br /><br />4. SO SO very thankful to be in the Forest Hills School district where they actually care about helping us solve our children's issues<br /><br />5. SOSOSO very thankful to my mom for helping take care of my kids since I have to work 1/2 hour away full time, she has brought my youngest son up to be a polite, caring young man :)<br /><br />6. Thankful for my neighbors who are there when we need them and keep to themselves when we don't (ahahaaahaa)<br /><br />7. Thankful to my awesome friends and my brother, who has come back into my life.....<br /><br />That should suffice for now, gotta get back to the grind. Thanks again CysticLife and Rondi for persuading me to dust off my blogspot!pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com1tag:blogger.com,1999:blog-8430180.post-29143068071878470102010-12-10T13:22:00.001-05:002010-12-10T13:22:08.815-05:00Ze Wish List<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/ze_wish_list/set?id=25798681'><img alt='Ze Wish List' title='Ze Wish List' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFmJDdkRZWW9FNEJHbzRTNm5BYjYxaVEAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/ze_wish_list/set?id=25798681'>Ze Wish List</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring a <a href='http://www.polyvore.com/chain_tote/shop?query=chain+tote'>chain tote</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-48849284701704648932010-11-24T13:08:00.001-05:002010-11-24T13:08:37.336-05:00Sweater Dress-Ing<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/sweater_dress-ing/set?id=25260467'><img alt='Sweater Dress-Ing' title='Sweater Dress-Ing' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFjZzYjAxZlgzM3hHQ1JUX0xTNmtTaHcAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/sweater_dress-ing/set?id=25260467'>Sweater Dress-Ing</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/suede_shoes/shop?query=suede+shoes'>suede shoes</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-45979492807923266902010-11-20T23:08:00.001-05:002010-11-20T23:08:35.039-05:00reality Check - The "Annie" Look<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/reality_check_annie_look/set?id=25137144'><img alt='reality Check - The "Annie" Look' title='reality Check - The "Annie" Look' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFmhsRkZBQ1gxM3hHSldwUzFIZHlvUncAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/reality_check_annie_look/set?id=25137144'>reality Check - The "Annie" Look</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring a <a href='http://www.polyvore.com/chain_dress/shop?query=chain+dress'>chain dress</a></small><p>#2 in the Reality Check series - translating our favorite character's looks into real life</p><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-58811069456270193802010-11-20T00:14:00.001-05:002010-11-20T00:14:41.320-05:00Reality Check - The Pippi Look<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/reality_check_pippi_look/set?id=25102816'><img alt='Reality Check - The Pippi Look' title='Reality Check - The Pippi Look' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFlZMZ2VFbVgwM3hHSG5yZFBXaGNPR0EAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/reality_check_pippi_look/set?id=25102816'>Reality Check - The Pippi Look</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/leather_boots/shop?query=leather+boots'>leather boots</a></small><p>How to wear the Pippi look in the real world</p><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-17816152989139082652010-11-18T23:32:00.001-05:002010-11-18T23:32:03.117-05:00All reddy<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/all_reddy/set?id=25075055'><img alt='All reddy' title='All reddy' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFmdFVHU4Slh6M3hHaDRseEpXaGNPR0EAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/all_reddy/set?id=25075055'>All reddy</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/skull_jewelry/shop?query=skull+jewelry'>skull jewelry</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-70895666889357236952010-11-18T22:54:00.001-05:002010-11-18T22:54:23.187-05:00Dec-utante<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/dec-utante/set?id=25074379'><img alt='Dec-utante' title='Dec-utante' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFlZBZFpycER6M3hHREVjdmpZMTZ6SlEAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/dec-utante/set?id=25074379'>Dec-utante</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring a <a href='http://www.polyvore.com/jersey_dress/shop?query=jersey+dress'>jersey dress</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-75232994359957667162010-11-18T14:07:00.001-05:002010-11-18T14:07:14.274-05:00Jingle Vintage Jangle<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/jingle_vintage_jangle/set?id=25059613'><img alt='Jingle Vintage Jangle' title='Jingle Vintage Jangle' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFkxsNk5DMGZ6M3hHbHJQX3hLT3lxbHcAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/jingle_vintage_jangle/set?id=25059613'>Jingle Vintage Jangle</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring <a href='http://www.polyvore.com/vintage_jewelry/shop?brand=Vintage+Jewelry'>vintage jewelry</a></small><p/><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-43917231804294186722010-11-15T22:57:00.001-05:002010-11-15T22:57:37.809-05:00sudden flight<div xmlns='http://www.w3.org/1999/xhtml'><a href='http://www.polyvore.com/sudden_flight/set?id=24996400'><img alt='sudden flight' title='sudden flight' height='400' width='400' src='http://www.polyvore.com/cgi/img-set/BQcDAAAAAwoDanBnAAAABC5vdXQKFi1MaWRwRFh4M3hHMmFaQ2RSUXFwZWcAAAACaWQKAWUAAAAEc2l6ZQ.jpg'/></a><br/><small><a href='http://www.polyvore.com/sudden_flight/set?id=24996400'>sudden flight</a> by <a href='http://www.polyvore.com/cgi/profile?id=2027143'>pattisunshine</a> featuring a <a href='http://www.polyvore.com/vintage_bags/shop?brand=Vintage&category_id=35'>vintage bag</a></small><p>my 1st set - go easy on me ;)</p><br /></div>pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-11451994706796506812009-09-24T23:15:00.001-04:002009-09-24T23:15:51.361-04:00I think I might be backmore on that laterpattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-1158680042175345562006-09-19T11:33:00.000-04:002006-09-19T11:34:02.193-04:00sorrySorry it took so long for me to update this. My flickr page is really:<br />www.flickr.com/photos/pattisunshinepattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-1148570347965156422006-05-25T11:16:00.000-04:002006-05-25T11:19:07.976-04:00Adios, Blogworld!To the very few of you who actually read my blog, I am announcing that I will no longer be posting here. I have decided to keep putting my pictures up on my flickr site, and perhaps I'll have little comments there, but I just don't have time to write. think the address there is <a href="http://www.flickr.com/pattisunshine">www.flickr.com/pattisunshine</a><br />But anyway, I've been writing more in an actual journal lately, and it's personal stuff that I'd rather not share with the world,. so please visit me at my flickr photo site.<br />Ta-ta! thanks for reading!<br />Love,<br />Pattipattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com4tag:blogger.com,1999:blog-8430180.post-1148314780021255832006-05-22T12:16:00.000-04:002006-05-22T12:19:40.606-04:00Hayden's Heroes<div style="float: right; margin-left: 10px; margin-bottom: 10px;"> <a href="http://www.flickr.com/photos/pattisunshine/150360664/" title="photo sharing"><img src="http://static.flickr.com/53/150360664_989b6d0410_m.jpg" alt="" style="border: solid 2px #000000;" /></a> <br /> <span style="font-size: 0.9em; margin-top: 0px;"> <a href="http://www.flickr.com/photos/pattisunshine/150360664/">Hayden's Heroes</a> <br /> Originally uploaded by <a href="http://www.flickr.com/people/pattisunshine/">pattisunshine</a>. </span></div>The Hayden's Heroes themselves!<br clear="all" />pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-1147741166342663202006-05-15T20:56:00.000-04:002006-05-15T20:59:26.426-04:00The Purps<div style="float: right; margin-left: 10px; margin-bottom: 10px;"> <a href="http://www.flickr.com/photos/pattisunshine/147252020/" title="photo sharing"><img src="http://static.flickr.com/47/147252020_ac76a25cc4_m.jpg" alt="" style="border: solid 2px #000000;" /></a> <br /> <span style="font-size: 0.9em; margin-top: 0px;"> <a href="http://www.flickr.com/photos/pattisunshine/147252020/">The Purps</a> <br /> Originally uploaded by <a href="http://www.flickr.com/people/pattisunshine/">pattisunshine</a>. </span></div>Holland Tulip Festival, everyone!<br clear="all" />pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com1tag:blogger.com,1999:blog-8430180.post-1146948979809459872006-05-06T16:53:00.001-04:002006-05-06T16:56:19.816-04:00closer look<div style="float: right; margin-left: 10px; margin-bottom: 10px;"> <a href="http://www.flickr.com/photos/pattisunshine/141537456/" title="photo sharing"><img src="http://static.flickr.com/45/141537456_c8357af229_m.jpg" alt="" style="border: solid 2px #000000;" /></a> <br /> <span style="font-size: 0.9em; margin-top: 0px;"> <a href="http://www.flickr.com/photos/pattisunshine/141537456/">closer look</a> <br /> Originally uploaded by <a href="http://www.flickr.com/people/pattisunshine/">pattisunshine</a>. </span></div><br clear="all" />pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-1146948952364082792006-05-06T16:53:00.000-04:002006-05-06T16:55:52.443-04:00Lady in red/aurora bourealis<div style="float: right; margin-left: 10px; margin-bottom: 10px;"> <a href="http://www.flickr.com/photos/pattisunshine/141538037/" title="photo sharing"><img src="http://static.flickr.com/55/141538037_c7f636e163_m.jpg" alt="" style="border: solid 2px #000000;" /></a> <br /> <span style="font-size: 0.9em; margin-top: 0px;"> <a href="http://www.flickr.com/photos/pattisunshine/141538037/">Lady in red/aurora bourealis</a> <br /> Originally uploaded by <a href="http://www.flickr.com/people/pattisunshine/">pattisunshine</a>. </span></div><br clear="all" />pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com0tag:blogger.com,1999:blog-8430180.post-1146358462311925002006-04-29T20:15:00.000-04:002006-04-29T20:54:22.386-04:00Flashes of scenes from the inside of a PICU room, floor 8, Center Wing, of DeVos Children's hospital cloud my mind as this week is the 1st anniversary of H's CF diagnosis. I thought I would be depressed, emotional, pensive - about the shock and then the disappointment, then the grieving for a healthy child that we went through. Instead, I am depressed and pensive about other things, selfish things. I have been holding H. closer lately, studying his features more deeply, memorizing his sounds and smells. I keep forgetting that he has a life shortening illness, and that we have no idea how long he will be in our lives. He seems so healthy and robust - to look at him. No one would suspect, save for his unusually pale hue, that he is a chronically ill child. Just over one year ago, our littlest one was born, and we had no clue.<br />I currently have several friends who are expecting their own new babies soon, and I have to bite my tongue to keep myself from asking them if they were tested for the CF gene. No pregnant woman wants to be burdened with the paranoia that there might possibly be something "wrong" with their unborn child. We all go into our pregnancies hoping for a shiny, healthy baby - and most women end up with just that. When I was pregnant with my first son, I knew in my heart that he would be healthy, happy, and perfect - and he was! (although the colic for the 1st three months was a hellacious experience) From the moment of conception with my second son, however, I knew something would not be right. I remember crying about it. I knew I was pregnant, and I knew the child would have some sort of disorder. I kept hearing about the autism epidemic over and over on the news, so I got the idea stuck in my head that he would be autistic. Then I kept meeting people who had kids with Cerebral Palsy, so I imagined that would be the fate of my new child. I was so sick during my pregnancy, and so full of fluid. And I knew.<br />When H. was a baby, he rarely smiled. He was pale-bluish, and had huge cheeks that puffed outward and hung under his chin. People would look at him, and turn their face away as if they had just seen a troll. I kept telling my mom "I just don't feel like he's in there. He shows no emotion". H. slept all the time, and always on his left side. Everytime he ate, he would cry in pain and then have strange aqua colored poops. I found that if I pounded somewhat forcefully on his back, it would calm him down, but he would always burp and then projectile vomit. Our pediatrician had me come to his office several times to work with the lactation consultant, they thought I wasn't feeding H. properly since he wasn't gaining weight - I would go in, and they would weigh him, and then have me nurse H. for 15 minutes, and then weigh him again - They discovered I was doing everything right, but he just was pooping it all away. In hindsight, if I had known about CF, or if my doctor had seen a CF baby before, he would have recognized this as typical, we could have started H. on CF meds right away, and probably would have avoided his near-death at two and a half months. Good ol' hindsight, eh?<br />But H. didn't die then; he is here with us, getting into EVERYTHING, testing his limits, making his big brother laugh, terrorizing the cat - everything a "normal" baby would do. The only difference is that we have to stop and give him pills before he eats, and we have to treat his lungs twice a day....and keep him out of daycare, away from second-hand smoke, campfires, sick people, germs...but most moms do that anyway. I love my sick baby like any mom would love their child, maybe even a little more, since I know he's probably just on loan from God. Someday we may have to give him back. I hope not. I hope he will outlive his parents. I hope he lives long enough to be around when a cure is found.pattihttp://www.blogger.com/profile/12262680746175934110noreply@blogger.com2