tag:blogger.com,1999:blog-43092567926796880022024-02-21T02:29:29.334-08:00Strength, Courage, Hope, Love, Life, Death, Angel, ButterflyAndersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-4309256792679688002.post-39521011983197798812011-08-30T18:46:00.000-07:002011-08-30T19:16:15.494-07:00In the mind of a childEveryday is a struggle to balance it all. How do we smile everyday when our hearts are broken? Sometimes I wake up and think, I can do this, others, not so much. Thing is, we have another child that we have to function for. I can't imagine what it's like for him, he was suppose to go through life with his partner in crime. Drew was there the moment we knew Rylee was not going to make it. I fight every moment to make life as normal as possible for him. "Normal" such a funny word. Nothing about our life is "normal." Days that I think Drew is Ok, are always the days that he falls a part. This kid can go from smiles to gut wrenching crying and screaming in the blink of an eye, and just like it us for us, you never know when it's coming. This past weekend Hurricane Irene reared it's ugly head. Funny that we live in FL, but it missed us and went up the North. The Hurricane was headed straight for NY. Rylee is buried in NY in our hometown. Drew was watching the news with me, asking all sorts of questions about hurricanes when all of a sudden he started crying and freaking out. He was petrified his sister was going to wash away. Stick the knife in a little deeper and turn it. The worrying never stops, it's never out of our minds. Hurricanes are nothing compared to what we live everyday. A few days with out power, flooded houses, roads closed. That's cake, I can handle that. Can you imagine your 7 year old worried that his sister whom he has already lost, washing away!!?? When does it end? When will he see life through normal eyes? The answer is simple, NEVER! There is nothing I can do to change this. Mom's are suppose to make these things better. I can't change this, but I can be there to hold him, and wipe his tears away. We all miss her so much. Days, minutes, it doesn't matter, the loss is still as fresh and deep as the moment it happened. Shhhh don't tell to many people that, society thinks we should be OVER it. Some of our friends actually think we are ok, and moving forward. I don't want to spoil it for them. I'm not saying it like that to be a bitch. It's easier for them to think we are ok. I understand they have no clue what to do. We have lost friends, and we have gained friends. I thank and love the people who are not tired of hearing us talk about Rylee, or at least put up with us when we do( which is a lot.) A huge thanks to a family friend who went to Rylee's gravesite during the storm to take pictures of Rylee's headstone for Drew. This was no easy task as almost all the roads to the cemetery were closed. The amazing thing is through all the snowstorms during the winter, and now a hurricane, not one thing that we have put at her site or on he headstone has washed away. This is simply amazing, makes me wonder sometimes, hmm......Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0tag:blogger.com,1999:blog-4309256792679688002.post-66310666775359846242011-05-25T12:25:00.000-07:002011-05-25T12:47:01.479-07:00"I would Die If I Lost My Child"I have heard so many things over the past year. I try and tell myself "they don't know any better." Oh, how I am thankful they don't know. That is what we call innocence in the grief support group I go to. I do however want to vent about people saying " I would Die If I Lost My Child." It makes my skin crawl. It's like saying " I love my child more then you love yours." Don't get me wrong, I feel like dieing, and part of me already has. How selfish of me to do that to Drew, my innocent, sweet, albeit rambunctious 7 year old. He has already endured more then any child should. He watched his sister be so sick. I left him for weeks at a time to be at a hospital 2 hours away, he was whisked away as his sister was dieing in my arms not knowing that he would NEVER see her again. I could never do that to him. Then there is my parents. I know what it's like to lose a child. I could never choose to make them live this life. They already have to deal with the lose of their granddaughter and endure the pain of watching their child face the worst thing in the world, and there is nothing they can do. How could I do that to James, the only other person who knows how I truly feel. You will die a different death, an emotional one, but not a physical one. It will hit you, that no matter how painful it is to lose your child, you are not honoring their memory at all by dieing. I look forward to the day I die, because I will once again be with my baby girl. I want it to be when it's my time though, right now I need to be here for my son. I don't love Rylee any less because I'm still here living.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com13tag:blogger.com,1999:blog-4309256792679688002.post-38187506276047276832011-04-07T17:46:00.000-07:002011-04-07T17:50:31.788-07:00I don't have the wordsAs usual it has been forever since I blogged. I just never know what to say anymore. <br /><br />For me, life stopped. When life stops, it leaves very little to be said. I think what I'm going to try and do is go back and do different post about things we have been through or done since my last post. Hope I actually come back and do it. Stay tuned!<br /><br />JanetAndersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com6tag:blogger.com,1999:blog-4309256792679688002.post-55586966664272028092010-10-26T18:07:00.000-07:002010-10-26T18:37:50.478-07:009 months!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinLdubgQGo8O64wAPwcJAyGVy-AdxbjbKNH0DbJ9pFvz2Oap8JyBj9lPareYGLMFmz4Sh5ldddViX0DCnhN6y75ODPVD0WEnX4e49bKm_y3aOqwEvfGufkpWBEAE49y0I9RqWveV4u8xKF/s1600/002.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinLdubgQGo8O64wAPwcJAyGVy-AdxbjbKNH0DbJ9pFvz2Oap8JyBj9lPareYGLMFmz4Sh5ldddViX0DCnhN6y75ODPVD0WEnX4e49bKm_y3aOqwEvfGufkpWBEAE49y0I9RqWveV4u8xKF/s320/002.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5532533983990661650" /></a><br />So much has happened in 9 months. We started a foundation called Butterflies of Hope, have held two big events. I'm a consultant for thirty-one all proceeds go to Butterflies of Hope. The websites are butterfliesofhope.org and mythirtyone.com/JanetCongero We have spent the summer traveling, did Rylee's headstone. The list goes on and on and yet, I'm still in the same place as I was 7:57pm on January 10th. Life is going on, I look like I'm living it, I should win an oscar, because it's all fake. Life has stopped, it does not move, I just act. I love when people tell me how great I look, and how well I'm doing. Cut me open, slice me in half because that's what my heart looks like inside, split forever. The holidays are looming and the cement boulder that sits on my chest gets heavier and heavier. I don't want to trick or treat with out Rylee, I don't want to be Thankful on Thanksgiving, I don't want to wake up Christmas morning to a half empty tree, I don't want this life. I don't want January 10th to come. She has been gone as long as I carried her inside me. I live for Drew. He needs his Mom and Dad. I feel like we are doing the best we can for him. His life is as normal as possible. I pray he has no clue how hard this is for us.I'm petrified of the next few months. Every night, I cry. I will never understand. I wonder if I will ever write an uplifting entry again? If I do, I wonder if it will be real or me pretending? I know it's only 9 months but, it's 9 months of not having her. Her big eyes staring into mine, head on my shoulder, hand on my heart, hands in my mouth feeding me food, dreams, just dreams. What's she doing? Who is with her? Can she eat? So many questions.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com15tag:blogger.com,1999:blog-4309256792679688002.post-19889247001133611492010-07-08T20:01:00.001-07:002010-07-08T20:33:45.300-07:00Say Rylee To MeThis weekend will be 6 months. I don't know how we have made it 6 months and not sure how we will make it though 6 more. I miss her so much.<br /><br />This is something that was given to us from one of the leaders of a support group we go to.<br /><br /><strong>SAY RYlEE TO ME</strong><br /><br /><br />The time of concern is over. No longer am I asked how I'm doing? Never is the name of our daughter mentioned to me a curtain descends, the moment has passed. A life slips from frequent recall. There are exceptions close and compassionate friends, sensitive and loving family, for most, the drama is over. The spot life is off. Applause is silent, but for me the play will never end. The effects on me are timeless. <em>Say Rylee to me</em>. On the stage of my life she has been both lead and supporting actress. Do not tiptoe around one of the greatest events of my life. Love does not die. Her name is written on my life. The sound of her voice replays within my mind. You feel she is dead. I feel she is of the dead and still lives. She ghostwalks my soul. Beckoning in future welcome. You say she was my daughter, I say she is. <em>Say Rylee to me </em>and say <em>Rylee</em> again. It hurt to bury her memory in silence. What she was in flesh is no longer with us what she is in spirit stirs within me always. She was of my past but she is part of me now. She is my hope for the future. You say not to remind me. How little you understand and I can not forget. I would not if I could understand you. But feel pain in being forced to. I forgive you. Because you could not know and I would forgive you anyway. I accept how you see me, but understand you do not see me at all. I strive not to judge you. For yesterday I was like you. I love you, will make no exceptions toward you, but I wish that you could understand that dwell in both flesh and spirit. The mystery is that you do too, but know it not. I do not ask you to walk this road. The assent is steep and the burden is heavy. I walk it not by choice. I would rather walk with her flesh. Looking not to the spirit roads beyond. I am what I have to be what I have lost you can not feel. What I have gained you can not see, and I would not have you. <em>Say Rylee to me</em> for she is alive in me, She and I will meet again, though in many ways we've never parted. She and her life play light songs on my mind, sunrises and sunsets in my dreams. She is real and shadow was and is. <em>Say Rylee to me</em> and <em>say Rylee again</em>. She is my daughter and I lover her as I always did.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com4tag:blogger.com,1999:blog-4309256792679688002.post-46095894736001879322010-06-03T18:16:00.000-07:002010-06-03T18:18:39.998-07:00Poem on a card that a friend sent.I am wearing a pair of shoes.<br />They are ugly shoes.<br />Uncomfortable Shoes.<br />I hate my shoes.<br />Each day I wear them, and each day I wish I had another pair.<br />Some days my shoes hurt so bad that I do not think I can take another step.<br />Yet, I continue to wear them. <br /><br />I get funny looks wearing these shoes.<br />They are looks of sympathy.<br />I can tell in others eyes that they are glad they are my shoes and not theirs.<br />They never talk about my shoes.<br />To learn how awful my shoes are might make them uncomfortable.<br />To truly understand these shoes you must walk in them.<br />But, once you put them on, you can never take them off.<br /><br />I now realize that I am not the only one who wears these shoes.<br />There are many pairs in the world.<br />Some women are like me and ache daily as they try and walk in them.<br />Some have learned how to walk in them so they don’t hurt quite as much.<br />Some have worn the shoes so long that days will go by<br />before they think of how much they hurt.<br /><br />No woman deserves to wear these shoes.<br />Yet, because of the shoes I am a stronger woman.<br />These shoes have given me the strength to face anything.<br />They have made me who I am.<br /><br />I will forever walk in the shoes of a woman who has lost a child.<br /><br />Author UnknownAndersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com4tag:blogger.com,1999:blog-4309256792679688002.post-91793495241987632372010-05-20T12:31:00.000-07:002010-05-20T12:43:52.187-07:00The Words are painfulEveryone keeps asking if I have blogged? I want to, but, writing is almost to painful. Mother's Day and 4 months happened with in a day of each other. The day before Mother's Day we picked out Rylee's headstone. I can't begin to explain how awful that was. In that moment, it seemed to real. The guy had to draw the whole thing out. Looking at a piece of paper that is designed like a tombstone with Rylee Bridget Andersen 2-5-07 - 1-10-10 on it hit like a ton of bricks. Why? What purpose does it serve? I will never understand why my arms were not good enough. Mother's protect their children, they make them better. On the night of 1-10 my baby looked into my eyes, crying and gasping for air and there was nothing I could do. I could not take her pain away, I could not save her. So, on Mother's Day I felt as if I had let her down. I am proud to be Rylee's Mother and I will always be her Mama. I just hate that she is not here and that I could not stop her body from failing her.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com3tag:blogger.com,1999:blog-4309256792679688002.post-7142317621332037402010-04-27T18:17:00.000-07:002010-04-27T18:32:25.111-07:00Would I choose to not have had Rylee?Shocking <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">question</span>, I know! When I first heard this question by another Mom who lost her child my immediate thought was HELL NO!!!!!!!!!!!!! This Mother was asked this question by a friend around the anniversary of her <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">child's</span> death. It struck me, because she didn't know the answer to it. Her answer was " I don't know" She said " I don't know what I would pick, I am <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">grateful</span> for the time with my son but, to live with this pain forever is so unbearable." She honestly didn't know if her life would have been better never having had her son. I will not judge this women, I know her pain. Her son passed away four years ago and yet, she still does not know, because her pain from his death is so deep. This was so profound for me. My answer is still HELL NO! but, I had to stop and think after she gave her reason for not knowing. She's right, the pain is so awful and it will never go away. For me, I would never trade, the laughs, smiles, tears, screams, hugs, kisses, touch, feel, smell. She was mine, and I would never give that up. I would however, do anything to have her back where she belongs.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com2tag:blogger.com,1999:blog-4309256792679688002.post-5434865709699996822010-04-24T18:49:00.000-07:002010-04-24T19:05:29.646-07:003 Months plusIt has been a little over 3 months since that awful night. I was hesitant to write about it. Society believes my life has gone on. That 3 months is long enough. People forget, or don't know what to say. 3 months is nothing, 2o years will be nothing. The gaping hole will be there forever. To society I want to say FU!!! There is no limit to grief, especially when it's the lose of my child. The days are busy, very busy. That is the only way for me to survive right now. We go on for Drew, that is not a choice. On the outside I look whole, on the inside I am shattered into a gazillion pieces. I find it hard to write this because nothing compares to what Rylee lived everyday and how hard she fought to be with us for as long as she could. I love her, it's so plane and simple I just love her, want her, miss her.<br /><br />Mother's Day is right around the corner. We have to go back to NY. Part of me is happy so I can be at the cemetery and the other part of me just wants to stay here and ignore it all. James and I have to pick out the headstone. How did we get here? A headstone for our baby. I just want to scream. Friday night we will put on our happy faces and help his brother celebrate his engagement. I am truly happy for him but, dread that weekend.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0tag:blogger.com,1999:blog-4309256792679688002.post-51897189438751311072010-04-19T13:03:00.000-07:002010-04-19T13:03:24.872-07:00Mitochondrial Disease<object style="BACKGROUND-IMAGE: url(http://i1.ytimg.com/vi/8PApuJs_vPA/hqdefault.jpg)" height="344" width="425"><param name="movie" value="http://www.youtube.com/v/8PApuJs_vPA&hl=en_US&fs=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/8PApuJs_vPA&hl=en_US&fs=1" width="425" height="344" allowscriptaccess="never" allowfullscreen="true" wmode="transparent" type="application/x-shockwave-flash"></embed></object>Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com1tag:blogger.com,1999:blog-4309256792679688002.post-13112370952693039062010-04-02T19:13:00.000-07:002010-04-02T19:14:27.400-07:00GriefGrief is a tidal wave that over takes you,smashes down upon you with unimaginable force,sweeps you up into its darkness,where you tumble and crash against unidentifiable surfaces,only to be thrown out on an unknown beach, bruised, reshaped...Grief will make a new person out of you,if it doesn't kill you in the making.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com1tag:blogger.com,1999:blog-4309256792679688002.post-43094993416757871372010-03-30T12:09:00.001-07:002010-03-30T12:29:53.848-07:00CarTwo and half years ago I joined the world of the minivan mom. I hated to admit it but I LOVED it. Anyone who has had or has one knows how much easier it is for travel, friends, car pool, space. We decided to get it shortly after <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Rylee</span> was born. This is the car that we have traveled all over with, the car that we went back and fourth to the hospital, Dr's in numerous states too. The car that <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Rylee</span> would laugh at or with her brother, choke, and have seizures in. The car that I would constantly stare in my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">rear view</span> mirror to make sure she was still breathing, not ripping her tubes out or watch her laugh and smile. This car has so many good and bad memories. When we got back from her funeral in NY I was not sure we would keep this car. Do we even need a minivan anymore? Now, the car is where I cry. See, for everyone else their lives went on and ours have not. I have said this many times. No one wants to see us upset, or have their day brought down. In the car I'm alone. That of course is half the problem. The car is where I can release all my emotions with out doing it in front of others, the car is where I can blast songs that remind me of our sweet girl, the car is something I now hate because she is not in it. The car is something I love because I can let things out. I will cry before I go somewhere or when I leave so I don't cry while there. Do we keep this car? Do I want this car anymore? Is it what is best for us still? I don't have the answers to any of those questions. I will hold on to it for a while before I decide. I would hate to get rid of it now and decide 6 months from now I want the car that she was in with us back. No matter what car I'm in I will cry, I will look in the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">rear view</span> mirror wishing she was there. At the end of the day it's not the car, it's <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Rylee</span> no longer being in the physical world with us. None of this is right. This was not the way it was suppose to be. She was suppose to be the one that beat the odds of this ugly disease.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com1tag:blogger.com,1999:blog-4309256792679688002.post-90224175860423984852010-03-18T18:28:00.000-07:002010-03-18T18:31:17.528-07:00Awesome Video from AmberA friend made this for us. I can't thank her enough. It's truly priceless.<br /><div><embed name="FLVPlayer" pluginspage="http://www.macromedia.com/go/getflashplayer" src="http://www.onetruemedia.com/share_view_player?p=" width="600" height="526" type="application/x-shockwave-flash" quality="high" scale="noscale" wmode="transparent" salign="LT" flashvars="&p=a8ea61d42d5ecc6e65d058&skin_id=1603&host=http://www.onetruemedia.com"></embed> <div style="PADDING-BOTTOM: 15px; MARGIN: 0px; FONT: 12px/20px verdana,arial,sans-serif; WIDTH: 600px; TEXT-ALIGN: center"><a style="TEXT-DECORATION: none" href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt1" target="_blank">Make an on-line slide show at <span style="TEXT-DECORATION: underline">www.OneTrueMedia.com</span></a></div></div>Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com1tag:blogger.com,1999:blog-4309256792679688002.post-59031397184509801782010-03-10T17:45:00.000-08:002010-03-10T18:14:44.656-08:00Two Months:(I keep thinking it can't be two months. This can't be my life. I could not have possibly gone this long with out seeing her beautiful face, feeling her against me, screaming because she did not get her way, no Dr's or hospitals. How? Why? It makes no sense to me at all. I can't wrap my brain around it. That night plays over and over in my head and I can't get it to stop. I'm not sure that it ever will. I walk through life everyday as if we are normal, and we are so far from that. I vividly remember people talking about us behind our back, saying that we were lying about Rylee, and she was not as sick as we were saying because she looked fine. I look like I am fine, yet my world crumbled in an instant and I am far from fine. The hole is so deep and it can never be filled. Please, don't ever judge a book by a cover. I wish my life was moving forward. I wish I could join the rest of the world. I wish she were still here. On FB today a friend wrote something that she thought might help. I am so thankful that we have so many people that care for us. Thankful that she tried to help, so, please when you read this don't take offense. It was about looking back to the first day, and realizing that nothing is as bad as the first day. I could agree with those words and take comfort from them if it were not my child. A spouse, parent, sibling, friend maybe, not my child. I feel no less pain, I feel no more strength, I feel no more healed today then the first day. In some ways it's worse, the numbness has worn off and all I am left with is the reality that I will never see her, feel her, kiss her again. I cry in the shower, the car, I choke up all the time. When will it feel different? Tomorrow James and I head back to NY for his Father's Memorial. We will fly on the same plane that we flew 2 months ago to bury our daughter. We will spend two hours in the place that we last saw her, touched her. We will do it together though for his Father. His life deserves to be honored too. I'm afraid to see everyone. It's much easier to hide the pain from people who have not known us our entire lives. Afraid to go back to the cemetery and face that she is really there and never coming back. The numbness seems better to me at this point. Thank you to all our family and friends who have been there for us. Thank you for helping us celebrate Drew's 6th birthday this week. We continue to be blessed by so many wonderful people. Please continue to pray for Madelyn, Abbie Grace and Savannah.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com3tag:blogger.com,1999:blog-4309256792679688002.post-89518713399761619932010-03-03T18:29:00.000-08:002010-03-03T19:04:56.226-08:00SignsWhen Rylee was getting sicker, and the Dr's were not sure what was going to happen, the word death came up. It hit hard in so many ways but, instantly I thought I needed to let Karen and my family know that if anything happened, James and I wanted Rylee brought home to NY. We did not want her buried in FL. NY is home, no matter where we live and, I didn't want her to be alone. While we sat on the couch knowing our daughters life was coming to an end, I found myself second guessing what I wanted. I didn't know if I could leave her. I felt this way until we were at the cemetery. I needed signs, silently begged for them. I did not want my baby to be alone. We decided to go ahead and bring Rylee back NY. The thought of having her here was worse then leaving her in NY but, still looked for something to tell me this was right. I'm going to back track a little. In October while I was in the hospital with Rylee a close family friend suddenly passed away. I was heart broken for this family, for my parents who wouldn't leave us to be there. I received an email from Mr. Reardons daughter saying that his death had to have something to do with Rylee and that she whole heartedly believed he was another angel in heaven fighting for her down here. I wanted to believe this so much and if it helped his family to believe he was helping Rylee I was all for it. We needed all the angels we could get. I hated that it had to be someone we knew though, and that they were hurting so badly. Now to bring you to the morning after Rylee passed away. I was not taking phone calls. Friends of ours came over and fielded the phones for us. I was upstairs and Terra came up and she looked at me saying "I'm sorry but she won't take no for an answer, it's a Maryann." It was Mrs. Reardon letting my know that she wanted us to use Mr. Reardons car when we got to NY. We landed late into NY so we were not going to Locust Valley until the next day. My parents picked James and I up in Mr. Reardon's car and off we went to the cemetery. After talking about what we wanted we were taken down to an area that had space available. My parents decided to get a plot and James and I would need two. When we got to the area that we could choose from all of a sudden I started to listen to everyone saying " I don't want to be up the hill, I don't want to be in the shade, I want sun, I want some tree's" As I was listening to this all I said was "I don't want her to be alone" Everyone was looking were there was no one around. I knew James Grandparents and my Grandfather were in the surrounding areas which was good but it still did not feel right. My Dad moved over to another area and said "what about here?" then he walked over to see who she would be near and all I heard him say was "Oh my God, I can't believe this" My Mom went over to see who it was. She turned and looked at me and I said "who is it" her answer was "Tom Reardon" We just started to cry. Our baby was not going to be alone. There we were in his car at his grave site and he would be with our baby girl. That was our sign. Sadly, he did not pass away to be her angel on earth but he is her Angel in heaven. James and I took great comfort knowing that Mr. Reardon would be with her. We found out we could not put her right next to him because his son had bought the plot next to him but we bought the 3 plots after that.It was fine, he was close enough. I knew she was in the right spot, God and Mr. Reardon lead us there. My baby is NOT alone!Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com2tag:blogger.com,1999:blog-4309256792679688002.post-60119573062774777292010-02-28T18:31:00.000-08:002010-02-28T18:33:24.448-08:00Heart in the cloudsI just downloaded this layout and although it does not look perfect, the name of the layout is Heart in The Clouds, PERFECT!!!Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com1tag:blogger.com,1999:blog-4309256792679688002.post-57983530303776501992010-02-28T18:02:00.000-08:002010-02-28T18:07:31.848-08:00DisplacedDisplaced is what I feel coming back here. I left here to go to caringbridge because I felt I was dishonoring Drew by writing most of my blog post about Rylee. Now, Caringbridge is not the right place either. None of this feels right. A lot of what I write will about the journey of life into death and what I'm going through but I will also write about Drew and what our family is up to. Thank you for following us and for all your support and prayers, they are what keeps us going each day.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com2tag:blogger.com,1999:blog-4309256792679688002.post-67222836002177785042009-10-01T17:21:00.000-07:002009-10-01T20:41:05.144-07:00One foot, in front of the other.Not sure how much I have to give, not sure this will make any sense but here's what I have. We ended up in the hospital longer then we thought. Our 3 day stay turned into 7 and half days, yes, I count that half day, and so would you if you lived through it. Most everyone knows how Rylee loathes the hospital and Dr's. We spend many hours walking the halls, I mean MANY!! Everyone knows us. The TPN is in and as of right now we are trying to regulate her levels. So far her weight has not really changed, still not walking and she is just plain miserable. I miss her smile, laughter, spark, I ache for it. I fear that I will never see it again. The other night I found myself going through pictures trying to remember the last time I saw it. I can't even remember anymore. I cringe everyday that she cries in pain "mama owie mama hurt" One foot, in front of the other, that's all I can think about. She spends 20 hours a day hooked to a machine and 6 of those hours she is hooked to two machines. She has a tube out of her chest and stomach. Right now it's all a lot of work. Taking care of this is so much different then the GJ-tube. I know that we will settle into a routine, and soon it will feel like it's nothing but, right now we are not there yet, one foot, in front of the other.<br /><br />Thank you to everyone who has been there for us:) We have gained many friends, we have lost some who we thought we were very close to us. It's amazing how many people change in your darkest hour. Those who should be there are no where to be found(if your are reading this it's probably not you so don't be hurt by this.) Thank you to our friends who have been putting food on our table every night since we have been home, for picking Drew up for school and asking for playdates with him. You all have made our lives so much easier. Thank you for just doing it because we all know how bad I am at asking for help. Thank you to the 3 south nurses, you are amazing. Love that we have had the same nurses for 2 years. Thank you to our amazing Dr's who have not given up.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0tag:blogger.com,1999:blog-4309256792679688002.post-27016295026887746482009-09-13T04:18:00.000-07:002009-09-13T04:33:34.449-07:00Exactly what we needed:)Yesterday was Drew's first soccer game of the season. He started off in goal. He did a great job. He is much more a defensive player then offensive. I see Daddy working with him in the goal in the near future. He will happily tell you no one scored the half he was in goal. It was pouring in the morning but the rain stopped in time for the game, thank God.<br /><br />In the afternoon we went with the family and Stephanie to see Disney on Ice. My kids love anything Disney. I was a little worried about Rylee because when she's not feeling well things can go either way. They all loved it!! Watching their faces light up is priceless. Rylee kept saying "more ice" she didn't want it to end. She was clapping, laughing, sitting with all of us and in normal Rylee fashion feeding us. For 2 hours we had our girl back. I'm am beyond thrilled that we went. It made all of us so happy to see her like that, it has been a while. It was truly awesome and exactly what we needed. Drew was so excited when the cars characters came out. He loved it just as much as Rylee. Watching it through their eyes is so much fun.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0tag:blogger.com,1999:blog-4309256792679688002.post-49749280769483762372009-09-10T18:28:00.000-07:002009-09-10T18:41:51.382-07:00A little chat about God.Ever since my leg was hurt everyone would ask us "how we got through it?" Now that Rylee is sick we are asked all the time if we believe in God?How do you get through everyday? Don't we hate God for doing this?<br /><br />I'm going to answer to the best of my ability how we feel about God. First off I do not believe God gave this disease to Rylee. God does good things, not bad. I do believe God chose us to be her parents. For whatever reason he thought that we had enough love, faith and ability to handle this in the best way that we can. I believe that he is there for us everyday. I don't believe that we could wake up in the morning if we did not believe in him. There is a stronger power that allows us to live and get through everyday, and that is him. We love when people prayer for her. There is nothing more powerful then those prayers. Dr's, medicine, food are all important but without prayer and belief there is nothing. I'm in no way a holy roller. I just have faith and this faith, good family and friends it what keeps our heads above water.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0tag:blogger.com,1999:blog-4309256792679688002.post-5489260926264546472009-09-09T13:01:00.000-07:002009-09-09T13:24:03.857-07:00Anything but this. It's time:(I want to write about what an awesome wedding James and I were just in or, about seeing most of our friends and family or, about Drew wanting to play on the big hill.<br /><br />Not here to write about that though. I'm going to give an update about <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Rylee</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Mito</span>. I hate that <span class="blsp-spelling-error" id="SPELLING_ERROR_2">mito</span> is progressive. I hate that it has progressed. I especially hate that there is no cure. For a while <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Rylee</span> has been on a downward slope. I wasn't to worried. I know that's how this disease works. We have been through a "crash" before. After 6 weeks she started to come out of it. This time though, she is not coming out of it. While we were in NY it became quite apparent that she is not well and she is not getting better. She has not walked in 6 weeks, barley gets off my lap and now can't even eat through the tube. Her stomach has stopped moving, she is in a lot of pain. When we could get her hooked up the food was coming back out the opening in her stomach. My baby is not well:(<br /><br />Yesterday I took her to <span class="blsp-spelling-error" id="SPELLING_ERROR_4">ACH</span> to have her tube re-placed. They weighed her and she has lost more weight. Dr. W said it's time, there is nothing <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">else</span> we can do. Time for the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">TPN</span>. My heart sank. This is the one thing that I have not wanted to do. All along I thought I didn't want to do it because of all the side effects. There are lots, and none of them are good. What hit me yesterday is that more then the side effects I don't want to do it because after this there is no alternative. This is our alternative. As long as there is no <span class="blsp-spelling-error" id="SPELLING_ERROR_7">TPN</span> there is hope. What if this does not work???? The up side is she will gain weight. One of my concerns is that when they take the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">TPN</span> out she would just lose the weight again. She will lose it which is why Dr. W told me the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">TPN</span> won't be coming out. <span class="blsp-spelling-error" id="SPELLING_ERROR_10">TPN's</span> are not meant for long term feeds. We have no choice but to take the side effects as they come and keep her on this for as long as we can. We are sad, we are defeated, we are in love with this precious baby girl and we will do whatever we have to. We are stronger then <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Mito</span> and we will fight back.<br /><br />The tube they put in yesterday is not working either. Monday <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Rylee</span> will be admitted to put a central line in to start <span class="blsp-spelling-error" id="SPELLING_ERROR_13">TPN</span>.<br /><br />Thank you to everyone for being there for us. We are so lucky to have a great friends and family.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com2tag:blogger.com,1999:blog-4309256792679688002.post-70878329823656557412009-08-30T04:31:00.001-07:002009-08-30T04:45:30.106-07:00It's a kindergarten world.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWS7cInj82azw7G8a8fMyCEgjF8RLFSy97s1aC7bZlvQQXJsg_O0M3aIMaTnnJUVKhcKhU6fRzGDnwjW-7PxG5rUSMAzB31G_cnxJfT0wagK8PTB_JXaoe8ERVtg4Q2StT7njsEg6mmgl7/s1600-h/002.JPG"><img id="BLOGGER_PHOTO_ID_5375721495989331394" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 231px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWS7cInj82azw7G8a8fMyCEgjF8RLFSy97s1aC7bZlvQQXJsg_O0M3aIMaTnnJUVKhcKhU6fRzGDnwjW-7PxG5rUSMAzB31G_cnxJfT0wagK8PTB_JXaoe8ERVtg4Q2StT7njsEg6mmgl7/s320/002.JPG" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggyhJj-Yt_Cji7vaiiX2RdeOVEou4IAKrjEMgs89xTnqfO8034EndjwlaQ528dCbxinF1QgK3g9EwkU3hG6WR07IfUV0gampwqZHZsd6tVLdKsSbnqJ0YW-lbWXygj40FSUPySVYpzbfsr/s1600-h/001.JPG"><img id="BLOGGER_PHOTO_ID_5375721491431636962" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 195px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggyhJj-Yt_Cji7vaiiX2RdeOVEou4IAKrjEMgs89xTnqfO8034EndjwlaQ528dCbxinF1QgK3g9EwkU3hG6WR07IfUV0gampwqZHZsd6tVLdKsSbnqJ0YW-lbWXygj40FSUPySVYpzbfsr/s320/001.JPG" border="0" /></a><br /><br /><div>Drew started kindergarten this past Monday. How has five years gone by so fast?? He loves it!! I did not shed a tear. How could I cry when he was so happy. That does not bring tears to my eyes it bring smiles to my face and heart. His teacher seems really nice and we all like her a lot. I hope the rest of the year goes as great as the first week. I only hope they improve parent pick line, it's insane. We are thinking about the bus but it does not really help us out. Our major issue is Rylee's schedule. If she were a healthy normal child I would just suck it up. We will decide in the next few weeks what we will do. If the bus stop was at our entrance and not the first, all would be fine. Since it's at the first, I would still have to take Rylee with me. The bus also gets here way to late to get her down for her nap. We have a few friends who have offered to pick Drew up for us. I will see how this week goes and make a decision when we get back from NY. All in all a wonderful start to a new school year. </div></div>Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0tag:blogger.com,1999:blog-4309256792679688002.post-68019854199981751732009-08-19T12:07:00.000-07:002009-08-19T12:40:37.486-07:00Here we are 2 weeks post op.The first week and a half was rough, really rough. Rylee cried almost all day and would only let me hold her. Her hands and feet were so black and blue from all the IV attempts, her back sore and both legs, poor thing was miserable. I'm happy to say that we are now pretty happy and content but she still won't get down, walk or go to many people. She is petrified of everyone. Anyone she does not know that is around her brings on a crying jag. Oh I how wish she was not so scared of people. Everyone to her is a monster. I hear Mom's say all the time to their kids that "Monsters are not real", "it was just a bad dream." Monsters are real to her, they are the entire medical field and them some. Sad, truly sad that she is this scared, heartbreaking. We have a week full of apts this week. We are taking a break from speech therapy. Rylee hates it, once again it scares her. The therapist feels at this point we are not getting anywhere because she just shuts down. We agreed to end our 2 sessions a week and re-evaluate in 6 months. I am happy with the progress that she has made in the last year though. She has gone from a 0-3 month level to a 20 month level and she is 30 months. Still behind but not nearly as severe as before. Today we had PT. The physical therapist will only being seeing her once a month. She won't let her touch her so we are limited in what we do and that is my field so we will work together to come up with an at home plan. We were given a walker for Rylee today. This brings me so much sadness. I will do whatever we need to help her and if this is what she needs I'm fine with it. I hate that I am now looking at another visible reminder that our daughter is sick. This is not going away. The trick is to get her to use it, ha should be fun. We also had neuro apt on Monday and we have started her seizure meds. James and I just could not come to a decision on what to do. We decided to start the meds see how it goes. If she does not improve very much then they will admit her into ACH and have EEG study done. It has been total craziness.<br /><br />This weekend we are going to take Drew to Disney and leave Rylee with my Mom. It's really hard to leave her but Drew needs us too. This has all been so hard on him. A little Mommy and Daddy only time should be great for him. He starts School on Monday. He is so excited. How did my boy become old enough for kinder???<br /><br />No matter what Life is Good and we know that so we live it to the fullest:)<br /><br />I want to thank my family and friends for all their help these past two weeks. From watching Drew, cooking us dinner, taking Drew to camp for me you all are awesome. Thank you so much!!Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com1tag:blogger.com,1999:blog-4309256792679688002.post-19370913520496691992009-08-10T04:35:00.000-07:002009-08-10T12:10:00.011-07:00Gone and Back, thank God!Last Tuesday we left for GA to continue our quest of trying to completely figure out what's going on with Rylee and to figure out if there is anything we can do now for the Mito. We knew this was going to be a rough trip and it was. Wednesday was apt after apt and they did not go well. The first apt was with anesthesia which was suppose to be quick. That turned into an ordeal and a half and Rylee lost it. Rylee has a lot of issues with anesthesia and they all decided that they needed EKG's Echo's and a slew of other things. Rylee was a screaming lunatic. She hates the entire medical profession and these people and hospital were all new. This apt made us late for the next apt. Not a big deal though because the next apt she down right refused to do. I knew that she probably wouldn't do it from pictures on another persons blog that had been to Dr. Shoffner already. They put this big tube with a blanket all around you. Rylee wouldn't even let them get it down. Every time they tried Rylee would put out outstretched hands. After a few attempts and a balistic child they called it quits. Next up the wizard the wonderful wizard of OZ. Dr.Shoffner was next up. I was well prepared for his type. I had talked to Amber about her visit, Dr. Warren is no different and I worked in the medical field. He was much better then I expected and Rylee was much worse. She was pulling her hair out, my hair out, throwing things, screaming and hitting. Dr. Shoffner dealt with her great. He knew it was a long day and that this was only because she was so upset. He had to stand across the room and leave the door open and every once in a while she would give us a moment of peace. I knew that Dr. Shoffner would not be giving us many answers. He likes to run all of his test first. That means 3 more months of waiting. He said that there is definitely something else going on because her weight is so low even for mito. With the gj-tube and all the calories she gets she should weigh a lot more then 13pds 11 ounces and be longer then 28 inches at 2 and a half. We discussed the TPN and he wasn't really excited about it. He said that she would probably gain adipose tissue but not muscle and skeletal growth which is what we really need. Fat tissue would hurt her not help her. Thursday was surgery day. At first we thought we were staying over night because of the anesthesia. Last minute they decided to change how they were going to do things and that we would be able to go back to the hotel, woohoo:) Everything went well. Poor Rylee is miserable though. They had an awful time getting an IV and blood so 10 attempts later, 2 bruised and swollen feet, 2 bruised and swollen hands they were able to get one in. They could get the blood from where the IV was so they had to get it from the femoral artery on the non-surgical leg. The lumbar puncture took 2 times before they were able to get. All of this equals one sore miserable child:( It's so hard to see her like this but, I know it will pass. As everything else we are going through one day at a time. The only good thing about waiting 3 more months is we get a little break from the medical world for a bit.Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com2tag:blogger.com,1999:blog-4309256792679688002.post-24583853805444691112009-07-26T04:42:00.000-07:002009-07-27T04:14:09.424-07:00First Road trip of the summer season was to SC.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRUQ2nW1ULAR-2DI8GONsJv9GF1LbdYC0lOqp6-niuadn0EEX6JMTN2EwdK1d69hVN5s9rdI3whQrR7UbKaTMs3S1KPBIiI4zY3gTtLfZv8zSiolr4vdlWmSnblGWpnu2DTjHBezKwoTtD/s1600-h/047.JPG"><img id="BLOGGER_PHOTO_ID_5362739038667173778" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRUQ2nW1ULAR-2DI8GONsJv9GF1LbdYC0lOqp6-niuadn0EEX6JMTN2EwdK1d69hVN5s9rdI3whQrR7UbKaTMs3S1KPBIiI4zY3gTtLfZv8zSiolr4vdlWmSnblGWpnu2DTjHBezKwoTtD/s320/047.JPG" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiamEy3zS2157Axw9S3hwQ85io2EeoGEJk31smomBHMLMXvge7-rP_-8V4NfDPN3TsDV-69Dnv46Zj3WclIalY-HtbWdud8XYiaegf8f18PZ0VK2utkgeKvE6QdT8JFbJYiykRB3KYTbEXE/s1600-h/055.JPG"><img id="BLOGGER_PHOTO_ID_5362739037282849186" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiamEy3zS2157Axw9S3hwQ85io2EeoGEJk31smomBHMLMXvge7-rP_-8V4NfDPN3TsDV-69Dnv46Zj3WclIalY-HtbWdud8XYiaegf8f18PZ0VK2utkgeKvE6QdT8JFbJYiykRB3KYTbEXE/s320/055.JPG" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDg7v37bcY9ANl5BQRxZb6kDEDQqIlzcfu0W1okNZOkhijVi2n0FXmJMB7Fxjqh1-TyFromofOsEWP7iqN4zRGJvNCj4nPqnAm-xT3kFyYZFoHDjw5lvtIQVuw8axK6N-87bxESGkPt-U0/s1600-h/017.JPG"><img id="BLOGGER_PHOTO_ID_5362739032639906610" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDg7v37bcY9ANl5BQRxZb6kDEDQqIlzcfu0W1okNZOkhijVi2n0FXmJMB7Fxjqh1-TyFromofOsEWP7iqN4zRGJvNCj4nPqnAm-xT3kFyYZFoHDjw5lvtIQVuw8axK6N-87bxESGkPt-U0/s320/017.JPG" border="0" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtG_MV4gtx2XyWojZdY6UW_wdIxl6-nD67P0pDVdPjOIij56moLIcXb6o0TlR5WT3Jvm72aIpSnUTD-PY05djbY5NawrGIHwA_OrF8B9rB4D8SgCOPF8e9CXkRDMbvLACebF7OR8l1lcJj/s1600-h/064.JPG"><img id="BLOGGER_PHOTO_ID_5362739026573091746" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtG_MV4gtx2XyWojZdY6UW_wdIxl6-nD67P0pDVdPjOIij56moLIcXb6o0TlR5WT3Jvm72aIpSnUTD-PY05djbY5NawrGIHwA_OrF8B9rB4D8SgCOPF8e9CXkRDMbvLACebF7OR8l1lcJj/s320/064.JPG" border="0" /></a><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv9y-Eu2KdJov1IW92uUI4pPFDUCxxEZKT8J4pX5pXiCQ-BkZx7J0sFH_D2IUgIcTomVYKkS_Z-vfCuwedRYeHk5TkxYouWpNNLs0KkxpqDo2xxEvW1wNfNXWxuEb8y6vboQ8wauhjne9y/s1600-h/006.JPG"><img id="BLOGGER_PHOTO_ID_5362739025374459394" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv9y-Eu2KdJov1IW92uUI4pPFDUCxxEZKT8J4pX5pXiCQ-BkZx7J0sFH_D2IUgIcTomVYKkS_Z-vfCuwedRYeHk5TkxYouWpNNLs0KkxpqDo2xxEvW1wNfNXWxuEb8y6vboQ8wauhjne9y/s320/006.JPG" border="0" /></a><br /><br /><br /><br /><br /><div>I love me some travel:) Last year on the way back from our NY road trip we stopped at my Aunt and Uncles. Drew has been asking to go back ever since. We left on a Sunday and stayed until Thursday and then headed to Seaworld. We had a great time visititing, wine, ice cream, butterflies, beach, horse riding, Sue and Pauls( they are the sweetest people and their house is heaven to me,) golf cart rides, corvette rides and just plain ol hanging out. Uncle Frank is happy to have his TV back:) He's not much for Noggin or sprouts. He is more of the fall asleep in the chair with the remote type guy. Don't you dare try and touch the remote while he is sleeping. He is so much my grandfather it's scary, love him. A good time was had by all. Thursday we headed to Seaworld. Rylee loves fish, dolphins and whales. Perfect place for her and Drew had not been in a while. Both kids were happy as clams. In the words of Rylee " I want more" "I wanna go back see dolpin" It's fun seeing her show interest in something. Drew was so happy that his friend Bryce who had been at Disney met us for the day. I love that we are doing more this summer. After our road trip last year Rylee ended up in the hospital for the rest of the summer, not fun. I feel like we are doing so much lately, it has been so long since we have done all these things. As soon as I think we are adjusting Rylee has a few bad days. It is so hard for her to keep up. I'm working on my balancing skills. Fun with down time for her:)<br /><br /><br /></div><div>The best news of the trip was Dr. Shoffners office called while we were away. We were not sure if he was going to see her since all he does is diagnose and she has been already. He agreed to see us because the report is requesting more tissue. We leave the first week of August.</div></div></div></div></div>Andersen Familyhttp://www.blogger.com/profile/14336929562457445096noreply@blogger.com0