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d sun some wind which actually kept it feeling just perfect and a happy little girl who seemed to really enjoy her first trip to st george in the past when we ve driven down to st george we ve always been able to go non stop and get there pretty fast like other things sweet little eleanor has made that change for us whit s happy cause now he can have a bathroom break babies need to eat and they get a little restless so we stopped and gave her a bottle changed into her jammies and then headed out on the road again so really it wasn t bad just different and it did take a longer to get there but it was so so nice to arrive and simply put her in bed no need to wake her up and do a treatment no time spent unpacking all her equipment we hardly knew what to do with ourselves st george for us is all about walks pool time a little shopping and movie nights it s so relaxing and we wish we could go every month the first day the wind was a little strong and when wet wasn t super enjoyable so it was a hang out and read magazines in the sun kind of day i wasn t complaining we got a good dose of cousin time and had some good giggles eleanor is a tough cookie to crack but keira was able to do it she took some great naps pool side so adorable with a little less wind she was much more willing to splash around and explore the water and splashing in the face was fun swimming around the kiddie pool was eh but it was cute to watch she just likes to stand what little feet so amazingly grateful for this little blessing lately i ve been so worried about helping her sleep better and focusing on the fact that she s not getting the hang of it looking back at these pictures helps me remember and refocus on the fact that she s so perfect in so many other ways she can move and breath and pretty soon eat all on her own just to name the basics i m still getting use to that my sweet eleanor is a healthy baby and i need to relax and embrace the imperfectness in that too if that makes any sense oh i just love her posted by whit lindsey jonas and maggie at 9 29 pm 11 comments thursday february 27 2014 eleanor s first trip to disneyland we couldn t deprive eleanor the opportunity any longer we just had to go it was a necessity there was no way we could live with ourselves if we didn t take eleanor before she was 6 months it just wouldn t be fair like i mentioned before we were in need of a quick pick me up and it was good for our souls to go eleanor did fantastic and i think she s addicted already she s already pushing us to go again we went over president s weekend and knowing it would most likely be busy prepared ourselves to just relax and enjoy the feeling you have when you are there it was busy but wonderful all the same with perfect weather too good thing it was perfect weather too because maybe an hour into the day eleanor had a great blowout all over her pants and so the rest of the day was spent drying those out loving to stand it was such a new experience with new worries and new excitements the hands are always in the mouth first vacation sink bath funny thing about getting ready in the mornings was that we weren t necessarily faster but it was amazingly more relaxed with jonas and maggie it felt like we were racing against the clock to be ready so the rest of the group wouldn t be waiting for us we always had to wake maggie up early so we could do her treatments with eleanor she was the last to get ready and even with a bath it was pretty dang quick the best part was not having to wake her up to pack up and leave we could pick her up while sleeping and put her in her car seat simple as that first ride in disneyland in honor of her brother of course sister too but it all started with him first time in 6 years waiting in the regular line too bittersweet i love our classic dumbo picture oh grammie and papa what better disneyland partners could we ask for eleanor sure agreed many times this trip we were amazed at the simple things that eleanor could do that our angels couldn t it s as simple as looking around where she wanted to look while holding jonas and maggie s heads for them and trying to help them see what we thought they d want to see often times they were straining to see elsewhere if eleanor wants to see something up down to one side or another it s so easy for her to control herself i ll admit there were times it felt like a little piece of joy and magic were missing all those memorable visits with extraordinary experiences happening is tough to compete with but it s a new adventure we re on one we hoped and prayed for for a long time it s going to be great and we ve got a lot of time to enjoy it posted by whit lindsey jonas and maggie at 10 33 pm 5 comments sunday february 23 2014 all in the name of family history i ve been really struggling to want to blog and i really can t put my finger on why in a way i feel like i have nothing to blog about anymore which i know is not true i have eleanor s journey to record however normal that may be i recently have been looking into my family history and the stories i have been reading about my ancestors has given me the desire to redirect my attention back to my blog i m so grateful that i did record jonas and maggie s short lives here i won t lie and say we re completely fine and going about our lives just great cause we re not we re not terrible by any means but like we learned with jonas passing we are forever changed and that change takes some time to deal with and learn to incorporate in your life we miss maggie deeply it takes our breath away at times and hurts so much you want to do nothing at all the unexpected timing of her passing has made this feel more difficult to accept so on the outside we are being strong and going on day by day smiling laughing and truly enjoying eleanor but on the inside we are crumbling a little and fighting to keep rebuilding our pieces life took us on a journey to holland a place we never ever wanted to go to but a place that we grew to love and deeply cherish now that we have left all we want is to be back in holland there are so many things to be grateful for right now though things that keep us moving forward and pushing us to be happy first of all my testimony of the truth and knowledge that i will be with my family again and be reunited together forever it s that knowledge that keeps me getting up every morning and that knowledge that makes what happened bearable because i also know that jonas and maggie s life had a purpose and there was a greater plan in store for them after this life that their life was a gift to me from a very loving heavenly father the challenges and heartache were a gift because god only gives good gifts it might not have been the gifts we were expecting or looking for but in the end they were the gifts that i needed most importantly jonas and maggie helped me see the love and tender mercies that our heavenly father will freely give us and how much he wants to be apart of our lives if we let him i challenge you to let him in let him bless you and help you and be happy in this life eleanor of course is another blessing in our lives that is making us happy actually extremely happy she continues to amaze us everyday with how strong she is and how much she can do already she also is giving us a run for our money cause we have no idea what we are doing i told our pediatrician to bear with me as i think that everything is wrong with her we have been focusing our attention on her this past month and learning with her we were able to bless her the first of january and celebrate our first valentine s day together we also were feeling a little sorry for ourselves and even though we said we weren t going to go back to disneyland for awhile we caved and felt that s what we needed for a quick pick me up our happy place did not disappoint and we had a fantastic although different disneyland experience our little valentine love her so in the name of family history and to preserve our memories i will strive to be better at my blogging and try to do at least 2 posts in the month of february how s that for an oath and goal posted by whit lindsey jonas and maggie at 3 31 pm 6 comments thursday january 23 2014 more twisted silver bracelets whit and i are surprised and humbled by twisted silver they graciously donated more maggie bracelets these ones are a little different but intended for the same purpose we are extremely grateful to everyone for the quick and generous support we received with the last bracelets we re humbled by your love and are so grateful to offer these bracelets again for maggie s monument fund we re super close to selecting a monument for maggie and excited for her to have a stone in place next to her brother s hopefully it can be as beautiful as his and remind us of her so again for a donation of 20 or more you will receive a maggie bracelet by twisted silver 100 of the proceeds with go to maggie s headstone p s if you so kindly donated after we ran out of the other maggie bracelets and would like one of these please just let me know posted by whit lindsey jonas and maggie at 1 32 pm 2 comments friday january 17 2014 3 months both of my girls have hit the 3 month mark one for turning 3 months and one for being gone for 3 months it s amazing how time just keeps moving on eleanor is how old maggie was when jonas passed away does that make sense kinda weird to think i really do wish i would have had those 3 extra months with maggie i m so grateful i did with her and jonas every time eleanor does something all i can think about is how much maggie would have loved that her cooing her playing with toys her eating her bottle her getting her bum changed seriously all simple things but she would have been the best big sister gosh i miss her maggie a couple days before she passed away i never would have guessed she was so close to leaving us her plans were bigger than ours and i pray every day for her to be near me posted by whit lindsey jonas and maggie at 10 55 am 3 comments wednesday january 15 2014 a new year a new chapter 2014 is the beginning of a new chapter in our lives and i m still battling the idea of accepting that there are days when i m excited for the freedom that we have with this new chapter and there are others where i miss every single thing about our closed chapter and there isn t a day that something doesn t sting my heart last week for the first time i actually turned on disney channel right now i have a love hate relationship with it it reminds me of my children which makes me so happy to think about them but it hurts so much at the same time because of the hurt i tend to avoid things more than remind myself that s another reason why i haven t blogged for awhile or gone into her room lately or listened to her station on pandora or any music on her ipod for that matter since she passed i can t bear to play any of her games on her ipad or even wash her clothes in her hamper they still smell like her sometimes the hurt takes over it s all about a little at a time for me i m a totally pull the band aid off slowly kind of girl i haven t turned disney channel back on since then but i plan to and besides eleanor loved it silly girl already loving tv so maybe i really shouldn t turn it back on we definitely have more good days than bad my sweetie eleanor makes sure of that i truly know i m loved because of the wonderful blessing she is to me in this new chapter of ours we truly are first time parents it amazes me how little we know about what babies do some days i find myself thinking where the heck is the g tube when you need it eleanor has been following suit so far with being a pretty happy baby i can t complain there because to get a smile in the morning even though i know she s super hungry is the best thing in the world i see two other little smiles when she smiles at me jonas and maggie will always be with me i just don t have the drive to go back and write about christmas it was good but another season with the very recent death of a child is never my favorite so here are a couple of my favorite pictures christmas eve love this silly girl christmas morning look at that crusty maybe i won t be as lucky to get a smile every morning eleanor loves to play and move and stand the saucer might be her favorite notice the seat belt they aren t kidding when they say that babies move we ve had some close calls a little late but happy new year our closed chapter will never ever be forgotten and we will take many lessons we learned from there and carry it on into this next chapter whatever it may bring here s to a new chapter posted by whit lindsey jonas and maggie at 12 41 pm 6 comments thursday december 19 2013 thank you thank you thank you we are so humbled by the generosity of those that purchased bracelets they were bought faster than we ever imagined our heartfelt appreciation goes out to all that loved our maggie and continue to show us your love and support big or small with help from a good grief foundation and those that donated we are so much closer to buying maggie a headstone thank you thank you posted by whit lindsey jonas and maggie at 2 19 pm 5 comments older posts home subscribe to posts atom maggie s memorial fund twisted silver website what we believe whit and i have been married for 9 years now how time flies when you are having fun we have the most precious baby boy named jonas he is in heaven right now waiting for us to return to him we miss him every minute we also have a little girl named maggie who has the same disease that her brother had time with her is limited as well so we continue to do what we did with her brother enjoy every minute we are so blessed to have the most beautiful children and even though our time with them will be short we know we will be with them again jonas mathie jonas was born on december 2 2007 at six weeks old jonas was diagnosed with a genetic disorder called sma spinal muscular atrophy sma type i is a terminal genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves jonas beat the odds and lived with us for almost three years he returned to heaven november 18 2010 every day we had with him here on earth was our heaven we are better people because of jonas and miss him everyday 2 years old 1 year old margaret rachel maggie was born august 27 2010 like her brother she too has spinal muscular atrophy sma type i since day four of her life she has been on medicine that has prolonged her onset and is much stronger each and every day is treasured and we can t wait to share stories of her brother with her 8 months 2 years spread magic around carnival and auction what a sucess thank you all click here and here for more info friends and family aunt sandy morgan lindsay m l w nick chris and girls brandon christine and girls kim and suzanne hoyt tj navy man jarom and trisha summers paul taylor family sarah and spen...
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