The Manross Family

Hodges Chip

2012-02-02T13:52:00.001-05:00

This is going to be all over the place, so bear with me, but that is exactly where I am today...all over the place. I was going to try and go through Hodges pictures and put up a little glimpse of his 15 months with us. Maybe even some pictures that never made it onto the blog but as I started going through them my eyes welled up with tears. My heart hurt the kind of hurt that I try to protect it from all the time. To remember two years ago today, is to feel as though my heart might not take its next beat. In all that has happened in the past four years, there have only been two times that I have actually thought I literally can not do this. My heart, mind and entire being will not be able to function as of this moment and both times are when I had to leave Jacobsen and Hodges after they passed away. Two years ago today that is what we did with Hodges. We said goodbye. That final goodbye to his earthly body will forever be ingrained in my memory. To leave Hodges little body felt impossible and yet my mind was still working in a structured manner and I knew the separation had to occur. I will never forget kissing his little head and hands with a waterfall of tears falling all over the place and looking to Rich and Dr. Swoboda with what felt like a helpless, panicked look. Almost to say "somebody help me to not have to do this"! I didn't want to leave him, I didn't want for our time together here to be over. I didn't want to be separated from my little boy.
Two years today is a hard day to remember, but his life was so much more than his death. He was a gift and I will never forget all that he was, and the stir he caused in so many hearts and souls.

Hodges Chip Manross from Laurel Knell on Vimeo.

Jacobsen

2012-01-14T15:33:00.002-05:00

His stay was so brief, but his life was so huge. He is loved and so very missed. Four years ago today he passed away and left most who knew him changed. Love you to the moon and back little man!

One is Great, TWO is Better!!

2011-11-11T21:08:00.007-05:00

Today our whole family welcomed TWO beautiful new additions! Rich's sister Erin gave birth to two amazing, healthy little girls! We were thrilled to be there for all the excitement and we can not wait to go back and love on them soon!

Happy 3rd Birthday Hodges

2011-11-08T07:24:00.007-05:00

So loved and so missed.

October in Pictures

2011-11-01T10:06:00.005-04:00

Grandparents Day at Kensington's school

Charlie's Birthday Party

Disney on Ice

Halloween 2011

2011-11-01T09:55:00.003-04:00

Violet Incredible!!

Happy 4th Birthday Jacobsen!

2011-09-14T21:07:00.002-04:00

Four years ago today Jacobsen rocked our worlds with his entrance. What an amazing little gift we were given! He was loved before he even got here, and he is still so loved today. We had a really nice dinner with my grandparents tonight to celebrate Jacobsen's birthday. As usual it was done in style and I like to think Jacobsen knows we were celebrating him. Happy Birthday little man!!! You could not be more loved then if you were right here with me!

A First!

2011-09-05T10:53:00.002-04:00

Friday Kensington lost her first tooth!

A little artist

2011-09-05T10:21:00.006-04:00

Rich and Kenz did a great job giving our front door a new look. Rich painted and scrapped for two days and all along the way Kenz was there wanting to help. I love seeing the artist in her come out. She has a strong need to manipulate textures and add color wherever she goes!

Also meet Cindi! Kensington wanted to make a robot after school last week and this is what we came up with.

60 years...and counting!

2011-09-02T11:15:00.015-04:00

Almost a month ago on August 8th, my grandparents celebrated sixty years of marriage! In their typical style they made it about their whole family and not just the two of them. They took all of us out to Las Vegas to celebrate and celebrate we did!! We stayed three nights at the Bellagio and had a wonderful anniversary dinner at Lawry's The Prime Rib restaurant. It was a really special trip for two amazingly special people!!! Here are a bunch of pictures from our fun week!

First day of Kindergarten!

2011-08-23T22:36:00.002-04:00

Science Camp

2011-08-04T18:22:00.004-04:00

Kensington's first year at science camp and she really enjoyed it! Charlie her cousin came and went to camp too! The camp was called Little Chemist Camp. All week long they did experiments and came home with all types of goo and other interesting things they had made :)

Recap of our summer

2011-08-04T17:14:00.006-04:00

Starting with my little brother's wedding in CA!

Miss him

2011-06-16T14:05:00.005-04:00

Like a lump in the throat, feel like I can not breathe, miss him. It has been almost a year and a half since I held him. Since I whispered in his ears how much I loved him. He would almost always break into a big grin when I would whisper in his ears how much I loved him, like it was our inside secret between just the two of us.

This picture makes me smile. Hodges was only a couple of months old and he was strong. He did not need machines to live and life felt kind. SMA felt different with Hodges than it did with Jacobsen. I felt prepared and ready to fight with Hodges, where with Jacobsen everything happened so fast I felt helpless and like I could not keep my head above water. I miss them both and all that they were their short time with us and all that they could have been.

A real Cowgirl!

2011-06-16T13:44:00.004-04:00

Kensington's cousin Hank had an amazing farm birthday party two weekends ago. Kensington had a ball and she is sure when she grows up that she wants to be "a real cowgirl"!!

Happy Birthday Hank!!

Growing up too fast!

2011-05-18T22:51:00.005-04:00

Happy 5th Birthday Kensington!

2011-05-11T18:26:00.000-04:00

Spring Break!

2011-04-20T10:08:00.003-04:00

This year on Kensington's Spring Break we tagged along with Rich to a work conference in Miami and we played!

We are still here!

2011-03-20T10:05:00.003-04:00

We are still here and doing just fine!! I will try to update with what we have been up to and add some pictures this week! Thank you for continuing to check in on us!

Remembering Hodges

2011-02-02T13:57:00.002-05:00

One year ago today we held our big boy in our arms as he passed away. The memories of this day one year ago are not fond ones. They are traumatic and full of sorrow. I do not know how we did it that day and I do not know how we are doing each day now. Many times it feels like to much. My solace is that Hodges is no longer suffering. I love the thought of him, free of SMA and enjoying all that heaven holds with Jacobsen. I thought I would post his video again, in loving memory of his precious little life.

Hodges Chip Manross from Laurel Knell on Vimeo.

Memories

2011-01-29T08:35:00.008-05:00

One year ago today we were in the hospital and praying that Hodge could stay on his bipap and not be intubated. Love and MISS that smile more than words!

I have been trying to breathe through the memories from this time last year. Hodge went into his last hospital stay on January 25 last year. A couple times I have thought to go back and read what was going on but I would have tears streaming down my face just at the thought so I would quickly close the laptop and think well I am already a mess no need to take it any further. Today I finally decided to read some and as I read it felt like my heart broke all over again. It is hard to remember what Hodge went through. As a parent I felt so helpless standing there next to him in the hospital bed and holding his little hand. I kept telling him it would be ok, but deep down I knew Hodge would only be ok when he was finely freed from his failing body. As a parent that was a hard thing to accept. I miss him so much and I would give anything to change things if I could. Well, the keyboard and myself are officially soaked so I will just leave you with this blog from one year ago today:

Hospital Stay 4, Day 4, 9am

A very rough night for Hodges. At one point we thought we were going to have to make the decision to intubate. His poor little body went through so much. He is much better this morning but we both are exhausted. Hoping for a much easier day for him!

Snow Part II

2011-01-22T12:36:00.005-05:00

After spending the first morning of snow outside, we came in and rested as we were all tired. After our much needed nap, we went for a walk and met up with Aunt Laurel and Uncle Brayden at a park. We used Uncle Brayden's snowboard as a sled and Kenz along with the adults had lots of fun!! As we were walking around the city we found a restaurant that was open and warmed up inside and had dinner. It was so much fun and the city had such a special feeling about it. There were hardly any cars braving the icy roads but there were lots of people out enjoying the snow by foot and we had such a good time at the restaurant even though it was half staffed with a fraction of their normal menu available.

Our first big snow day had gone almost perfect and without a single hitch until Kensington fell. Kenz slipped on some ice and fell face first into some really nice brick steps. She of course was hysterical and mommy and Aunt Laurel tried to put on a brave face. She did not bleed that much and she calmed down after a few minutes so we decided not to take her to an ER. She recovered great but she has had quite the shiner for the past week.

Three years ago today

2011-01-14T10:28:00.004-05:00

We held our little man and told him it was okay to go and be with Jesus. Memories of that day still put a lump in my throat. It is hard to believe all that has happened in the past three years. It is hard to think of all the things that would be different if Jacobsen were here and healthy. I still hold on to the hope that one day it will all make sense. Here is a glimpse at our four months with Jacobsen. We miss you so much little man!!!

Snow 2011 Part I

2011-01-11T11:16:00.005-05:00

We have loved the snow and played lots in it! Here are pictures from our morning in the snow and later I will upload pictures from our evening adventures out in the snow with Aunt Laurel and Uncle Brayden!

8 inches on our steps!

Rich shoveling our stairs off and we have a lot of steps going up to our apartment!!

Park right around the corner from our apartment is where we tried to make a Snow/ice man. It was mostly ice so it ended up being a ice elf according to Kenz!

New Years Eve

2011-01-02T13:51:00.005-05:00

We had a great time spending New Year's Eve with the Phillips!

We had lots of food but all the kids wanted were cheese sticks!

Snow!

2011-01-01T22:28:00.006-05:00

Christmas night it started snowing and snowed off and on for 24 hours. Kensington was beside herself excited, so of course we had to get out there and play in it!! Our apartment is the second level of a historic home here in Atlanta, and since the owners do not have any children, Kensington had the whole big yard to herself! Here are pictures of her fun..and yes those are plastic bags on her hands! Kenz thought it was so funny putting a sandwich bag over her gloves to keep them dry!!

Christmas Pictures

2010-12-30T16:47:00.006-05:00

This year we went to my grandparents house for Christmas Eve just as we have done every year since I was born. We had a wonderful time and Kensington loved playing with her cousin Katherine! This year was a little different though, because instead of going home, Rich, Kensington, and I stayed and spent the night with my grandparents and had Christmas morning presents and breakfast at their house. It was so much fun and once again priceless memories and time with my grandparents!!

Kensington's big Christmas gift this year was a cabinet that was built for her great-great grandma back in the early 1900's. I believe before 1910. My grandma and my mom both played with it as children also. The cabinet was in pretty rough shape, so we had it totally stripped, repaired and repainted. So far Kensington has really, really enjoyed it!!

A little bit about everything!!

2010-12-27T20:40:00.002-05:00

I wrote the following blog two days before Christmas but never had the time to finish adding pictures until tonight. Here it is from a couple of days ago:

I have meant to write many, many times what we have been up to lately but just have not had the time or energy. We are doing just fine. Really enjoying the Christmas season, especially with Kensington! She has soaked every part of this time of year up and is already dreading having to take the Christmas tree down, just because she loves having it in her room! I have had lots of thoughts on the boys that I wanted to get down on here but again lack of energy in "going there". Yesterday I was in the car by myself driving on the interstate and the thoughts and memories of the morning Hodges died came rushing back to me. Mostly since Hodges died, I have just pushed such thoughts away in effort to cope, but yesterday I did not have any distractions so I remembered, I cried, and I felt as though my heart would burst at any moment because of the pain I felt. I almost pulled over because I thought I was going to be sick from the traumatic memories of Hodges dying in our arms. I quickly pulled myself together and through the tears prayed for God to comfort my heart and for understanding. I am sure it sounds crazy to most Christians who have not walked in similar shoes, but the truth is my heart has been very angry. It is just how it is. I would not choose for it to be this way, but it feels like I can not get around it. I know time will heal, it already has so much for Jacobsen. Not that I love or miss Jacobsen any less but time really does help the heart and you learn to cope better with the missing part. It still hurts but it does not have the stinging punch that it once did. On a different happy note, we have lots of pictures from the past month or so that shows what all we have been up to. We really have had such great family times and are so thankful for all the blessings we do have!

My Grandpa's 81st Birthday!!

Our very special SMA friend, Skylar's 1st Birthday!!!

Out Christmas shopping

Kenz wanted to dress up as a pilgrim for Thanksgiving

Watching tv at our friends house and Jackie captured this great pose of Kensington's.

Our trip to Ashville and the Biltmore. We took my grandparents there this year for their Christmas present. It ended up being really cold and snowing but we made some amazing memories and loved every minute with my Grandpa and Grandma.

Rich's sister aka Aunt Brittany graduated from GA State this month! We are SO proud of our Brittany!!!

Our rudolph at her preschool program. Of course I forgot my regular camera so the cell camera had to make do.

She dressed herself in this outfit and apron to help me make Christmas cookies!

Our first Christmas as a family of three instead of four since Kensington was 6 months old. Hodges was here the past two Christmases and the Christmas before those two, Jacobsen was here. We have done a lot of little things to remember them. One of them of course was putting up their stockings!

Merry Christmas!!

2010-12-25T21:47:00.001-05:00

Pictures from SMA conference

2010-12-08T11:54:00.002-05:00

Hodges' Birthday

2010-11-20T20:03:00.010-05:00

I have been trying to collect my thoughts on Hodges second birthday last week. I had imagined a big party in his memory but as the day grew closer my heart grew heavier. I was not prepared for all the sorrow I felt. I thought I could handle it all with a big brave smile like I do most of the time, but I was wrong. All of our family asked what our plans were and made great suggestions, but it came down to me being a total mess and not wanting to have a public crying fest. So we did nothing. Almost two weeks later I am totally ok with that. Hindsight it is actually funny what I did end up doing. I got food poisoning the night before his birthday, so I was up all night and early morning throwing up. Hodge was born at 3:39 in the morning and because of being so sick I was wide awake two years to the very minute of Hodges birth. I smiled through tears (and exhaustion) at how much fun I was having two years ago compared to that moment of being so sick. I wished everything was different. I wished he had been born into a body that was strong instead of weak, that was growing and flourishing instead of failing him, and wished he was here instead of not. I keep thinking that this will get easier but it seems my heart only longs for him more every day. The morning of Hodges birthday, I woke Kensington up and asked her if she knew what day it was. She did not know so I told her it was Hodges birthday. She jumped up to her feet in the bed and looked up to the ceiling with her hands stretched up and yelled "Happy Birthday Hodges"!! It was so sweet. Kensington has been talking a lot about the boys the past month or so. She has cried several times and tells us all the time how much she misses Hodges. I wish I could fix this for her, for me too for that matter.

Two days after Hodges birthday, one of Hodges' former nurses at Scottish Rite organized and held an SMA conference. As far as I know it was the first of its kind at the hospital. It was all about informing RNs, RTs, PTs, OTs and other health care professionals on the latest care for SMA patients. It was really amazing and Nurse Estrella's heart for the kids and their families was equally amazing. Per Estrella, her motivation for organizing this conference was Hodges. She said it was Hodges' little spirit and the way his room was always filled with so much love that inspired the conference. She said it was also the realization of how much knowledge the medical community lacked on SMA. As Hodges mother, to see something like this come together because of his little life was beyond touching. To know that my little man is still making a difference even though he is not here leaves my broken heart full.

Another SMA family

2010-11-17T20:58:00.005-05:00

Please pray for the Coleman family. Whit and Lindsay are amazing parents, to two amazing children that both have type 1 SMA. Their oldest, Jonas is three and having a tough time. They are having to make decisions that no parent wants to even have to imagine making.

Here is their blog:

http://coleman2family.blogspot.com/

Halloween 2010

2010-11-14T20:39:00.001-05:00

I know I am way behind but here are our Halloween pictures! We had a busy few weeks in October! We did the pumpkin patch, two parties, a festival, and the grand finale to wrap it all up was a great night trick or treating! Here are the pictures!

Happy Second Birthday Sweet Hodges

2010-11-08T17:16:00.002-05:00

Hodges Chip Manross from Laurel Knell on Vimeo.

Tonight..

2010-10-30T21:23:00.004-04:00

I miss Hodges. I wish he were here. I always wish he were here but tonight I really miss him and can not ignore it. One year ago tomorrow he was here, and we were having his first birthday party. He was happy to have all the attention at his party and Aunt Brittany and Granddad did an amazing job pulling him in his wagon so everyone could talk with him and see that smile of his! The past few days I have been thinking about his second birthday coming and it has made my heart so heavy. I want him here so badly and I want him running around and talking non-stop like any healthy two year old. I want to be dressing him, Jacobsen, and Kensington all up for Halloween and stressing over how we are going to wrangle three little ones trick-or-treating. I hate SMA.

Gymnastics

2010-10-20T19:10:00.003-04:00

Go Jackets!!

2010-10-17T21:05:00.004-04:00

Yesterday we spent our morning working at Kensington's pre-school's playground. They were having a parents work day where the goal was to clean up the playground and get new sand and mulch in for the kids to run, dig and play in. Rich and I went not really knowing what to expect and what we went away with was a wonderful time, a clean, well groomed playground and best of all met a bunch of new people that were really great!

After working on the playground Rich and I had no plans so we came up with the idea to take Kensington to the GA Tech game. The game was filled with a lot of firsts! We purchased tickets from a person selling them on the street. We were pretty nervous whether they were legit or not but turned out they were not only legit but they were also great seats! This was also Kensington's first ever Tech game and she loved it! Kensington did not care much for football playing going on, but there was lots to keep her entertained. She was mesmerized by Buzz the mascot and was thrilled we were right in front of the Tech cheerleaders! Tech ended up winning and we all had a good time cheering! After the game we walked to a restaurant in the Highlands were we met up with Rich's parents and Uncle Marshall, Aunt Erin and Charlie and Hank. It was neat because they had been to the Georgia (Tech's age old rival) game earlier in the day so we had a table full of red and black and gold and white. We are definitely a house divided :) At one point Kenz was hot so she took her GA tech sweatshirt off and Charlie was cold so we (Rich and me) put it on him! Uncle Marshall and Aunt Erin were such troopers to let Charlie wear the forbidden colors and we all got a good laugh out of it!

Bummed after Middle TN scored!

First attempt at a family picture.

Second attempt was much more successful!

Braves Game

2010-10-05T11:06:00.009-04:00

We had a blast at the last regular Braves game of the season! It was so fun and was thrown together a little over an hour before the game started! The fall weather, the braves win and the tickets were free made it a perfect afternoon at the ballpark!

Old pictures

2010-09-29T10:18:00.003-04:00

Kenz wanted to look at old pictures of herself. We had quite a good laugh at some of the pictures so thought I would share some of them :)

A Celebration!

2010-09-15T18:39:00.014-04:00

Yesterday for Jacobsen's birthday we got together with our families that were in town and celebrated Jacobsen's birthday. The past two years I have been more hesitant to do anything, mainly because my heart hurt so at the thought of celebrating without Jacobsen. This year was different for some reason. This year I had many tears a couple of days leading up to Jacobsen's birthday, the thoughts and memories I usually push away, i kind of embraced and grieved for Jacbosen. Then the day before something clicked with me and I thought "I want to have a party"! So I emailed our families and as usual they were wonderful to drop everything and make plans to spend the next evening with us for dinner and cake at Aunt Laurel and Uncle Brayden's house. We had so much fun! At one point I looked around and saw everyone laughing and talking and I thought this is perfect. So many of the people there last night were there the day Jacobsen was born. We reminisced some of the day Jacobsen was born. Mainly we just talked and laughed about current things, but what stuck out to me the most, was the fact that every person there has had a rough three years. Everyone there has hurt and experienced unimaginable loss right there with us. Everyone there (and of course a bunch that were not there) have loved and given Rich and I support and strength to the most unselfish extent I have ever personally experienced. So last night I was in awe of where the past three years have taken us, starting with Jacobsen's birth and really in awe of knowing there is no way we could have gotten through everything without the amazing love and support of so many family, friends, and total strangers. I do not know if I have ever put it on here since everything has calmed down since Hodges' passing, but Thank You! Thank you to everyone who has loved on us continually the past three years!

Here are pictures from our celebration of Jacobsen's birthday!

Kensington got really into dancing!

Still dancing out on the porch

I think this is when Aunt Laurel was telling the now funny story about her getting assaulted by an intoxicated lady in Paris last week!

As the party was starting to wind down, we got a little silly!

Happy 3rd Birthday Jacobsen

2010-09-13T18:55:00.013-04:00

Happy 3rd birthday Jacobsen! It is hard to believe all that has happened in the past three years. It is hard to believe sometimes that we only got to have Jacobsen here with us for four months. He was such a presence that it feels like he was here much longer. I will always remember how Jacobsen would cry if someone else was holding him and the minute he was handed to me he would stop. He knew how to make his momma melt :) It brings tears to my eyes and makes me smile to think that this birthday for Jacobsen he has his little brother up there with him. It will be an amazing day when we are all together again! Here are a bunch of pictures of Jacobsen's four months with us. Happy birthday little man!!

Pre-K

2010-09-13T14:01:00.008-04:00

Here are pictures of Kensington's first day of pre-K, in which she insisted on wearing her new "skinny jeans", high tops and 3/4 sleeve shirt in 80-90 degree weather! It tried very hard to persuade her to go with the cute sun dress I had picked out but she had her mind made up!

Walking to school

Talking with her teacher

Our climber

2010-09-10T10:11:00.009-04:00

She LOVED it! She climbed all the way to the top in less than two minutes with never a moment of hesitation! She was totally focused and can not wait to go back!

Coming back down

Pre-K Orientation

2010-08-29T18:52:00.007-04:00

Friday, Kensington had her pre-k orientation and she got to meet her teachers. Gaga and Mimi went with us. Kensington seemed to get comfortable pretty quick and her two teachers seem wonderful! She will be going Monday thru Friday from 9:30 to 1:30. Hopefully it will be an easy transition for her and me :) For the past four years she has been my one constant and it is going to be quite weird with her spending half her day away from me. I am thinking I need to take up some kind of hobby or get a part time job. Maybe now I can focus on actually learning to sew, like I have been threatening to for years! Here are some pictures of her before orientation and then one of her in her classroom playing. None of the other mothers had cameras out so I was a little self conscious and only got one of her there. Of course now I could kick myself for being so silly and not breaking the camera out :)

A great Family!

2010-08-27T13:35:00.006-04:00

Here is the blog of a great SMA family that is in need of help. The father Whit, I met in Utah with Hodges. He works with Dr. Swoboda and he would call us to do our weekly updates on Hodges. Whit was great and unfortunately for him, I always felt real comfortable in telling him how overwhelmed I was with the realities of SMA because I knew he really got what we were going through. He was a great sport and though I have never met his wife or their son Jonas, I have kept up with their blog and they are one great, great family! They are expecting their second child, a little girl and she will have SMA type 1 just like her big brother, Jonas. If you feel led, please consider helping the family!!!!

Please go check out the Colemans!

http://coleman2family.blogspot.com/

Pictures from the past month

2010-08-26T09:49:00.003-04:00

Still here and lots of thoughts

2010-08-23T08:36:00.004-04:00

We have just been super busy. Still trying to get everything situated in our new apartment and everything out of our old house. We are loving being in the city and have met some wonderful new people! I have so much to blog about. So many new things, some old things and lots of thoughts on the boys. The new things in our life have been so refreshing but as always our, my heart is extremely heavy. Almost seven months later we are still trying to wrangle this thing called life without Hodge. He consumed our life and it is hard trying to move on. The hardest thing has been all the hard memories. Watching him suffer, knowing all along his time was short, and then making the decision to let him go. I never wanted to have to make that call for him. We did with Jacobsen, and from the minute I knew Hodge was going to have SMA, I prayed the Lord would just take him when he wanted him. It was torturous with Jacobsen and was and continues to be that way with Hodges. Medical technology is truly amazing and we could have continued to intervene but in February it all seemed too much for Hodge and that is when we chose to stop. I wonder if that was the right decision. I wonder selfishly because I want another moment or another hour with both boys. They both were so weak and we were not going to win against SMA but oh how I would love to have them here. Of course I would love to have them here and not in pain or suffering. I wonder if the boys could have chosen, if they would have made the decisions that we did. It was unbearable watching them suffer and at the same time it was unbearable to think of letting them go. Rich and I both felt unworthy to make the call for them and yet we were solely responsible for the decision. Even though the decisions have long been made and agonizing over it will not change a thing but heart and mind wonder. I wish they were here. I wish I did not have these still unbearable memories of letting them go. I will always wish it were different.

Moving!

2010-08-03T15:16:00.003-04:00

We have been packing for the past month and now for the past 4 days we have been moving, hence the lack of posts on here! This is the first time I have even had my laptop out in over a week! I will post more info and pictures soon of our new home!

Thanks for checking in on us!!

Iowa

2010-07-11T23:25:00.008-04:00

We are having a great time in Iowa! Have really enjoyed the small hometown festivities! The parades, festival food and games and live bands are right out of the movies! Here is a little peak at what we have been up to:

Downtown Thornton IA (Tiny town my grandma grew up in)

Update on all kinds of stuff

2010-07-06T08:03:00.003-04:00

We got back from the beach on Saturday night. We had a wonderful time and it was really great to get to spend our days relaxing and together. It was hard thinking about Jacobsen and Hodges and not having them there with us. Everything we do, every day is hard without them but as we played with Kenz on the beach, I could not help but miss Hodges and Jacobsen. I could not help thinking what it would be trying to wrangle three little ones on the beach instead of just one. I wonder will this huge pain in my heart ever go away.

The week before we left for the beach we found a really cute apartment in Atlanta. It is two blocks from the preschool we wanted Kenz to go to and about a block from a great elementary school. It is also 20 minutes from Rich's work compared to an hour plus. We were really excited about it but unsure what to do with our current house that has not sold. We finally decided to go the short sale route with our house. It is going to be a big headache but with the economy our home is just not worth what we owe on it much less what we have invested in it. So two days before we left for the beach we called our bank to start the short sale application process and signed a lease for our new apartment and we will move the first of August! I am so excited and now a little scared too. I know it is the right move for us but moving is going to be hard. I have wanted to move ever since Jacobsen passed away. I wanted to be away from all the hard memories but as we have started packing my heart hurts as there are a lot of good memories too. We brought both boys home to this house. We have loved, laughed, and shed so many tears in this house. Many, many times I was on my knees in this house begging God for so many things. For miracles, for comfort, for peace, understanding, etc.

Yesterday Rich and I started cleaning and packing Hodges room up. It was hard. So many of his things I know it does not make sense to pack up and keep. We cant use them and probably will never be able to use them again so I know the logical thing is to give them away to someone that can use them. It is hard because packing it up closes the door a little more on so many memories. It is amazing how fast you forget things when they are not apart of your daily life anymore and so the fear weighed heavy on packing his things, that have so many memories. I am so glad Rich was there to help me. He laughed when I laughed and he held me when I cried. After two hours we finally had everything out of the drawers and closet and lots of stacks on the floor to give to different places and people. It was exhausting emotionally but I am so glad that part is over.

The end of this week were are flying to Iowa with my side of the family. The small town my grandma grew up in is having a big anniversary celebration. It should be lots of fun and hopefully I will get some good pictures!

Pictures from today

2010-07-02T21:38:00.010-04:00

Busy Day...LOTS of pictures

2010-07-01T08:38:00.015-04:00

Yesterday was very busy! It included: the kids learning to clean their hermit crabs cages, going to the beach, going out for dinner to celebrate Hank's 2nd birthday and ending the day with putt-putt! The kids are going strong all day long, with the occasional nap and still falling fast asleep when we put them to bed! Here are LOTS of pictures from yesterday!

More Beach Pictures

2010-06-29T08:41:00.003-04:00

FUN Night!

2010-06-27T22:16:00.013-04:00

Rich's parents volunteered to watch the kids while we went out to dinner and then to see Jon Reep's comedy show. It was such a fun night and Jon's show was hysterical. Thank you Gaga and Pappy!

Dinner on the marina:

The Jon Reep Show:

After the show we thought we would stop and pick Krispy Kremes up as a surprise for the kids. Hank was so excited about the donuts but the bigger kids had a surprise of their own for us!

The big kids surprise for us! "Look Mommy and Daddy, Pappy got us our own Hermit Crab"!!!

Beach

2010-06-27T13:23:00.009-04:00

We just got to the beach with Rich's family and are having a great time! We got out on the beach yesterday at 9:30 am and we went back inside at 3:30. This is the first time we have taken Kenz to the beach in two years and she is loving it! Tonight Rich and I are going out to dinner and to a comedy night at the theater here, with Rich's sister Erin and her husband Marshall while Gaga and Pappy watch the kids at the beach house! Here are some pictures from yesterday.

Four Year Old Check Up

2010-06-24T09:49:00.004-04:00

Kensington had her four year old check up last week. She weighed 37 pounds and was 3 ft 6.5 inches. Her height was in the 90% and her weight was in the 75%. She was right on track with everything and it was nice to hear that everything was normal and healthy. Something I will never take for granted hearing about my child. She also got four shots. She was brave but cried all the way out into the parking lot as we were leaving :) A quick trip to Dunkin Donuts and Toy R Us afterwards dried up all the tears pretty quickly though :)

Kensington's Ballet and Tap Recital

2010-06-22T14:06:00.005-04:00

Kensington's ballet and tap recital was last weekend. It was too cute and all the little dancers were quite entertaining! Her teacher wanted them to all have bright red cheeks and lips and as you can tell from the pictures I think we accomplished that!!

Changes

2010-06-14T08:56:00.006-04:00

We are trying to sell our house. We have been ever since Jacobsen died. Of course with the market here and economy we have not had any luck yet. My parents moved out two weeks ago and it went really smoothly. I was worried about Kenz because we have lived together with them since she was one. She has done great and Mimi and Granddad only live 15 minutes from us so we are all still seeing each other a lot. As they were moving out, it got us in the cleaning out mode too. Here are some pictures of Kensington helping me clean out baby stuff in her room and Hodges. We have been taking pictures down and packing boxes of stuff up in hope of making the house look "more attractive" or really less cluttered :) We have not taken Hodges bed down yet or the clothes out of his closet. It is silly but I just have not been up for packing his stuff up. The day Jacobsen died I came home from the hospital and packed all of his stuff up. I wanted it done while I was numb and in hopes of less hurt by doing it down the road. I did not feel that way with Hodges for some reason. Our first night after we got home from Hodges dying, after everyone had left our house Rich and I cleaned out all his medical supplies and medicines but I just could not touch his clothes or other personal stuff. I know I will have to do it sooner or later whether we move or not but for now Im leaving it. I really dont know why besides just the mere thought of packing it up makes me cry and miss him that much more. Here is some pictures of my helper! I love in the first picture you can see my favorite picture of Hodges and it looks like he is smiling at Kenz!

Help Skylar!!

2010-06-02T08:29:00.015-04:00

Skylar is a beautiful little girl who has an amazing family! She also has Type 1 SMA just like both our boys. Her family is in need of a van to transport her and all her machines to and from doctor's appointments. They are having a fundraiser June 19th and for $50 your family can have a professional photography mini session. I copied the below information from Skylar's website: http://www.skylarmariejones.com/

We're having a fundraiser June 19th to help raise money to go towards getting a van to transport Skylar and all of her equipment. It would actually be a fun Father's Day activity if you're still looking for something to do... Because of my love of photography, and the amazing talents and generosity of a great photographer named Tessa, (LightLoveLaughter.com) we're going to do a photo shoot fundraiser. There will be more information on the "Help Fight" page of Skylar's website and an event on facebook is coming, but basically you can pay a mini session fee to get 10-15 pictures of your family or friends and a 5x7 printed picture will be included with the fee. The pictures will be available to order online if you want more or to share with family and friends. All session fees and profit from ordering will go straight back to our family. Also, Tessa has graciously committed to donating a percentage of her profits for the month of June back to us as well so if you can't make it out June 19th and still want pictures, give her a call! Here is Tessa's website again: http://www.lightlovelaughter.com

Our dancing queen

2010-05-25T17:34:00.005-04:00

This weekend we went to a wedding and Kenz got to go too! This was her first real wedding in some time and the first time she has ever been to a reception with dancing! She had a blast and we had a blast watching her dance and have such a great time!

Dancing with Daddy

Posing with uncle mike and aunt kara

Refusing to smile!

Zoo

2010-05-19T10:03:00.006-04:00

Sunday we went to the Atlanta zoo with friends and had a great time. In fact we ended up buying a family pass so it looks like we are going to be spending lots of time at the zoo in the next year! Here are some pictures from our day!

Kensington's Jump Birthday Party

2010-05-17T08:25:00.004-04:00

An emotional day

2010-05-14T17:34:00.004-04:00

Today has been full of remembering Hodges and lots of tears with it. Today I was going thru Hodges' room and I found a little envelope. I opened it and inside were some locks of his hair from his first haircut. I melted into tears as I looked at the hair. The emotions I felt were endless. How I miss that little boy and his full head of blonde hair! I hate that all I have left of him is a couple locks of hair but at the same time they are such a sweet, real reminder of him. Today we also took Hodges' special needs stroller to a sweet SMA family here in Atlanta. I cried again as Rich loaded the stroller up in our car just as we had done every time before with Hodges in it. It was not letting the stroller go that was hard, it was the sting of Hodges not being there to use it anymore. It was the sting of knowing the last time we did it he was here. Kensington had spent last night with Rich's parents and Rich's mom said that she had also been talking about Hodges a lot today. She even asked if she could watch the slideshow that we played at his memorial service. They said she talked about him the whole time the slideshow was playing. One of my favorite things she said and has said before is "Hodges sure did love me, he sure did love his sister"! I love that she knows that and that is what she thinks of when she sees him!

So life keeps moving and Rich and I are trying are best to keep up with it but with part of you missing it is so hard. Losing our boys has changed us so much. It has given us so much perspective on what is really important, but it has also put a hole in our hearts that I do not think will ever be healed. I think as we go we will learn how to deal with the pain better but I do not think our grief will ever be over or gone. As Rich says all the time, "We are just trying to learn how to breathe again". Kenz seems to be doing so much better. She is no longer crying when we drop her off at school or having random overly clingy episodes. She still talks about Hodges and Jacbosen all the time and I love that! Her and her young innocence of wearing her emotions on her sleeves is so good for her and me!

The past few weeks and months we have really enjoyed getting out of the house and doing so much of what we could not do before. The last six months of Hodges life it was so hard for us to get out with him. It was exhausting getting all of his equipment and him out of the house and then on top of that moving him was always a dangerous gamble. He could and would choke so easily and then we were in a frenzy to get him stable and his numbers back up. Many times he would do just fine, but the stress of the unknown left us extremely stressed and too timid to try it. So this new found freedom has been fun for us though the price for it is always in the back of our minds. We have taken Kenz to lots of parks and many times just gone and driven or walked around different places, just because we could. We have loved giving her all of our attention and I even think we are doing it without making her too spoiled!

Strawberries!

2010-05-12T10:05:00.005-04:00

Yesterday, Kensington's class met at the Strawberry Patch to pick strawberries. Kensington's cousin Charlie came with us and they both had so much fun picking strawberries! We also stopped on the way to the farm and got donuts for the class to celebrate Kenz's birthday!

Four years ago today..

2010-05-11T13:16:00.006-04:00

Rich and I became parents for the first time! Kensington entered this world after 14 hours of labor and 15 minutes of really easy pushing at 3:15am on May 11th! Our lives from that moment on were forever changed. She has taught me so much. She has taught me love like I never knew, the necessity for patience :) and she has kept me grounded when I felt as though everything was falling apart around me. I love this little girl and feel so blessed to be her mommy!

Ready to go home from the hospital:

First Birthday:

Second Birthday:

Third Birthday:

Today! Happy Fourth Birthday!!

Kensington's Birthday week begins :)

2010-05-08T14:41:00.008-04:00

Kensington will turn four this Tuesday, May 11th. This year she (and I) had a major dilemma! She really wanted a princess/girly birthday party but the problem with that is almost all her cousins and friends are boys!! So we finally came to the conclusion that there were going to have to be more than one party :) So this morning all the girls in our family went to a very girly nail salon in Atlanta and we all had manicures and pedicures. Kensington got the "Miss Priss" mani and pedi and it came with not one but two princess crowns!! It was so much fun and afterwards we went to a fun restaurant for lunch and had birthday cake! I had a hard time picking out my favorite pictures from today so brace yourself for a whole bunch of Kensington from about every angle :)

three months

2010-05-03T13:43:00.003-04:00

Yesterday, it was three months ago that Hodges died. I do not get too worked up on monthly or yearly anniversaries. My thoughts are he is gone and it does not matter if it has been three days, three months, or three years. All that matters is I can not see or touch my baby.

Yesterday I thought about it being three months since I had last held Hodges. I thought about how much I loved rubbing my hands through his blonde hair. I thought about how I prayed every day of Hodges' life for God to some how find it in his will to cure my child and let Hodges be a real true miracle of healing. I thought about how it has been three months since I held his long body in my arms and whispered in his ears how much I loved him. I thought about how for as long as I can remember every night I would put him to bed and I would do his meds, his therapies and then put his bipap on and roll him on his side so he was facing me. I would then sit in a little chair right next to his bed where we were practically eye to eye and I would play his favorite songs on my iphone. He would hold my fingers and I would sing along with the songs playing. He would smile at me and then usually fall asleep pretty quickly. Many, times I would stay right there for a little longer even after he was asleep and have a good cry. Every day of his life I was overly aware that his time was short. I knew every day that one day I would be right where I am, and all I would be able to do is remember what he was.

Yesterday I also thought about how it had been three months since he needed a machine to eat, breathe, and cough. It has been three months that he has forever been free of SMA and all the awful struggles that come with the disorder. It has been three months that he has been in heaven and in the presence of God! So I rested yesterday in knowing that while the past three months have been the hardest of my life, they have been nothing but joy and perfection for Hodges!

Conversation with Kensington

2010-04-22T19:59:00.002-04:00

Kenz: Mommy my baby Dora is dying.

Me: Kenz she does not have to die.

Kenz: Mommy I am just pretending.

Me: Ok

Kenz: Dora it is ok to go be with Jesus. Go Dora. We love you sweetie.

My eyes tear up and Kensington continues and then she repeats exactly to Dora some of the very personal things that I said to Hodges as he was passing. I was shocked and started to cry all at the same time. Luckily Kenz was not paying attention to me because she was so focused on her Dora doll. I can not believe that she remembers all these things that were said that day. I am sure this is normal as I myself think of that day and remember different things from it. What I am wondering though, is there anything I can do to make this better or easier for her. None of us have gone to grief counseling or anything like it and I wonder if it would be beneficial or help. If anyone who has gone through something similar with their child I would love any advice!!

Our little Golfer

2010-04-13T17:57:00.000-04:00

Egg Hunt

2010-04-07T08:18:00.007-04:00

Easter 2010

2010-04-07T07:58:00.009-04:00

Our family had a nice Easter weekend. Saturday we had a fun egg hunt with family and friends and celebrated Rich's 27th birthday. Sunday we took Kenz to her gaga's and pappy's sunday school class. I had planned to go to our church's 8am service but just could not make myself. It still is just too much. I am still so angry and I know the the anger is stemming from so much hurt. I am trying, we all are trying to deal with it the best way we can but it is proving to be a much harder road than we could have ever imagined. On a different and happy note, here are some pictures from Sunday.

Our attempt at a family photo! We soon figured out that we have too many children under four to achieve a good family picture!!! It was fun attempting though! This sadly is the best one and it doesn't even have our little nephew Hank or Pappy in it.

Kensington not getting her way and having a meltdown! I LOVE mine and Rich's face!! What a great parenting moment!!!

All the kids were pretty tired by the end of Sunday school :)

Egg hunt at school

2010-04-05T12:04:00.005-04:00

Our day at the Museums

2010-04-04T22:25:00.006-04:00

Kensington's grief

2010-03-27T23:47:00.015-04:00

Last week was really hard. Kensington started showing signs of childhood grief all at the same time. I guess it all finally hit her. I looked up preschool grief and it was like they were describing her. As her mother it was and is hard to watch and hard to figure out how to make it all better for her. I know the reality is that I can not make it better because the only perfect "better" would be for Hodges to be here. It all kind of came to a head this past Thursday. Rich and I went to take Kenz to her school. She cried most of the way there saying she did not want to go in. This is not like her at all. She loves her school and begs to go on days she does not have it. We got there and sat in the car for a few minutes talking about the fun day she was gong to have and then finally she calmed down and I took her inside. Once we got to her classroom, she again started crying and clinging to my leg. I walked her in the classroom and her teacher was just wonderful. We tried very hard to get her to play and get excited about what the teacher had planned for that day but she was still crying and not letting go of me. At this point I am very torn. I could not decide if it was best to leave Kenz, betting that she would be fine in a few minutes or if I should give in and take her home. The torn part in making that seemingly simple decision is I did not not where these emotions and feelings of hers where coming from. My biggest fear is that it was related to Hodges and in that case there is no way I could leave her. If she was hurting and wanting to be with us, then that is where I wanted her, with us. I took Kenz right outside of her classroom and am trying to calm her down and talk to her and her sweet teacher says to me that this week Kensington has been talking a lot about Hodges and that maybe it is finally hitting her that Hodges is not coming back. Embarrassingly enough I fell apart then. I hate that she is hurting so and I hate that the reality is just that, he is not coming back. Needless to say Kensington left with me. We went back out and got in the car with Rich and went home. Rich explained what was going on to his boss and he graciously gave Rich Thursday and Friday off. Friday we got up and took Kensington to two museums and just loved on her non-stop. We had a wonderful weekend filled with all our family and she seems better today. I know however, that her grief can not be fixed in one day or one weekend. It is going to be a long road for her just like for us. I took lots of pictures of our day at the museums and will post those tomorrow.

Staying Busy

2010-03-14T16:30:00.011-04:00

The past week we have been really busy. We have spent lots of time with family and friends and loved every minute of it. Last weekend, we rode bikes with Aunt Laurel and Uncle Brayden and went to a park with them. Then Sunday afternoon Laurel and I took Kensington to get her first manicure! Kensington surprised me by loving every minute of the manicure and she was even disappointed when I told her she had to wait till next time to get a pedicure! Here are some pictures:

Biking:

Park:

Girls day out and Kenz's first manicure!

If..

2010-03-11T23:02:00.003-05:00

If I could scream and cry. If I could jump up and down and yell at the top of my lungs. If I could curl up in a ball and sob uncontrollably. If it would change things and make a difference I would. But I know that it will not bring Hodges or Jacobsen back. I know that my heart will be just as broken as before. So I dont. Instead I just have slow, quiet tears streaming down my face and all I can think about is how mad I am about everything. I am mad at God. I am mad at Satan. I am mad at myself. People always say that it is a normal part of grieving to get mad and to be angry. So I am taking comfort in the fact that I might still be sane and normal :)

We picked up Hodges death certificate today from the funeral home. I looked at it and read every line. One line on there said the causes of death were hypoxia, respiratory failure, and Spinal Muscular Atrophy Type 1. It stung reading those words. Why I dont know. Maybe because it pained me so much to watch Hodges so many times in respiratory distress. Maybe because I always hated that as his mother breathing was so easy for me and such a terrible struggle for him. The death certificate also had a line that said pronouncer and then Hodges doctor's name that took care of him the last week and day of his life. It brought the memories back of me holding Hodges. Him being blueish/gray in my arms and that doctor kneeling at my side and listening for a heartbeat. Then with the saddest look in his eyes, the doctor looked up at me and said "he is gone". I hate that he is gone. I am so angry right now..

Raising Awareness!!

2010-03-10T10:39:00.003-05:00

Two weeks ago, our good friends, Taylor and Stacy had a premier for their short film, The Dinner Guest. Rich and I went along with many of our friends and family and had a great time! Taylor and Stacy also used the event to raise awareness on SMA and they raised over $1600 for SMA research! At the premier they also showed a video with pictures of Hodges and Jacobsen and facts on SMA and it shared how close we are to a cure given the right funding! It was a night full of good memories and hopefully just the first of many, in our efforts of raising awareness and money for a cure!!! Here are some pictures from the evening:

Some more pictures

2010-03-06T21:34:00.007-05:00

Thought I would share some of the other pictures that we had taken back in December. Jenn gave us such amazing pictures and such amazing memories from that day! We will always be grateful for the gift of her time and talents to our family! Seeing the four of us together and Kensington interacting with Hodges, puts a smile on my face and a lump in my throat. I know this is obvious and I really do not intend to sound like a broken record, but man I miss him.

speechless or wordless or something

2010-03-02T17:24:00.002-05:00

Im not sure what it is but it has been hard for me to write about something, anything so I have ended up with nothing. We have done lots. Stayed really busy with friends and family. We have had so many laughs and so many tears. But to come here and write and share seems impossible because it seems like something is missing. Of course I along with everyone else knows what that missing thing is. Hodges. He was always such a big part of this blog and to come on here and blog about anything, especially happy times since his passing seems wrong. At some points when I am still and it is quiet, I think about Hodges and really remember all that he was and really let myself feel the ache of losing him and I can hardly stand my own skin because I feel so lost without that little boy. I do not know how to describe it except to say it is the most profound sense of sadness I have ever felt in my life. Rich and I have both said also that this has brought on a whole new wave of emotions and grief over Jacobsen. Hodges was such a welcomed distraction to our grief for Jacobsen and with him gone we are feeling so much for Jacobsen that we so eagerly ignored earlier.

We really are doing ok though. Even with all those emotions I just wrote about, we have loved and laughed so much and appreciated each other and Kensington in a way I do not know would be possible if it had not been for what we have been through the past two and a half years. Even though my heart is broken in so many ways, I am filled with joy and so in awe of our many, many blessings.

I have lots to blog about so I will try in the next few days to get it together and share some of the things we have been up to.

Thank you as always for walking this road with us!

Life and Hodges first haircut

2010-02-19T12:31:00.009-05:00

I thought I would try and blog today. I have had so many thoughts and emotions the past few weeks but to write about any of them is hard. So forgive me if I am all over the place but here goes a try at blogging about our new normal.
First of all many have asked about Kensington. She is doing amazingly well. She will stop every once in awhile and say "I miss Hodges" or "I do not want Hodges to be in heaven". The hardest one for me is when she said "but mommy I prayed for Hodges muscles to get better so why did God not fix them?" It is hard to answer her questions that I do not have answers to myself. I told her we just have to have faith that God knows best for us and Hodges.

God has given me many comforts throughout the past weeks. One was having Dr. Swoboda here with us to help us through everything concerning Hodges. What an amazing gift she has been to our family and it was priceless to have her here with us as Hodges passed. After Hodges passed she stayed at the hospital all day Tuesday with a team from Johns Hopkins that she had fly in just to preform Hodges autopsy. The autopsy revealed a couple surprises right off and Dr. Swoboda assured us that these findings were going to make a difference in SMA and finding a cure for it, specifically with the current research going on with stem cells. The autopsy in itself was a surprising comfort to us. It showed that his little body was just as weak on the inside which reaffirmed we made the right decision for him and it has been a comfort to know that even while he is gone he is still helping bring knowledge to doctors and researchers on SMA and all of us closer to a cure!

Dr. Swoboda called me Friday and wanted to thank us for all the envelopes her office had received with donations to The SMA Kids Fund at her office in Hodges and Jacobsen's memory! So THANK YOU to all of you who have generously given to such an amazing cause and one so dear to our hearts!! It really means so, so much to us because it means that even though our boys are not here they are still making a difference!!! As their mommy you all could not give me a more amazing gift!! So thank you again! You will never know how much your generosity has touched our family!

Many times throughout the day I have felt lost. Hodges required so much of my attention and to no longer be doing meds, therapies, turning him, keeping his feeding pump filled and so on is hard. No longer dealing with all the amazing doctors and medical professionals on a daily basis that had become part of our family is hard. Of course most of all is just missing that little boy. His smile melted everyone's heart that he came into contact with. He did not have the ability to communicate very well with us like normal kids, so when he would flash that smile or even when he would fuss his quiet little fuss it was a relief for all of us to know even though his body did not work his mind was going nonstop and that Hodges had an opinion!! I miss that opinion!! Thankfully Kenz has lots of opinions just like her brother and she has been a wonderful distraction. She is a force of energy and I am thankful that I can shower her with attention now.

On a different note, I was getting pictures of my camera and this is the first time I had done it since the beginning of January. On the camera were pictures of Hodges' first haircut. The barber all the men in our family go to and have gone to for almost 20 years was so gracious to come to our house to cut Hodges hair. Here are some pictures:

Good video on SMA!

2010-02-18T17:34:00.002-05:00

http://www.fox47.com/newsroom/health/videos/vid_61.shtml

Priceless

2010-02-15T14:24:00.003-05:00

I have lots of things to blog about but I was just thinking I do not have the energy to do it. Most of them are about Hodges and it just feels right now like too much to go there. That is what I was just thinking and then my sister-in-law sent me two pictures of Hodges three days before he passed away. Seeing him and me together took my breath away and the tears came. I am so grateful for the pictures. They are priceless!

This one is of me getting to to hold him while the nurse changed his sheets while he was intubated.

This is one of the few times he came out of being sedated and tolerated it for a few minutes.

This is tough

2010-02-09T10:54:00.014-05:00

I can not put into words how tough the last week has been for our family. Not that I need to because so many of you have eagerly walked this road with us and grieved as we have grieved.
I guess I can back track to when Dr. Swoboda arrived on Monday night. She first cried with us and then she assessed Hodges. We noted that we had about 4-5 weeks earlier changed Hodges formula to to a higher calorie formula since he had not been gaining weight. Once we put him on the new formula he immediately started gaining weight. Unfortunately with SMA the new weight put a strain on his weak body and hence over the past few weeks he had gotten considerably weaker and more fragile. Not to mention Hodges was already a really big boy for his age. While he was 14 months old he was mostly wearing 18-24 months clothes. So after many tears and talking for a couple of hours, we all came to the conclusion that it was going to be very hard and probably not even possible to get Hodges extubated (taken off the ventilator that was breathing for him). There was the hope that we could get him extubated and onto bipap 24/7 but at his current state that seemed like a disaster waiting to happen at home and again probably unlikely. While intubated, Hodges continually was having bad desat episodes. His x-rays showed his lungs being clear of collapses and still when moved he easily desated into the 50's and 60's. Dr. Swoboda could not believe how weak Hodges had gotten in such a short period of time. What little ability to cough he had had before had become non-existent and Dr. Swoboda confirmed what we had thought that his quality of life had taken a drastic decline. After seeing the last week of Hodges life where he had been continually in pain and discomfort and had to be bagged or coughed to have his sats come back up and for him to turn back to a pink color from blue, we decided enough was enough. He had been through so much and you could tell his little body was tired and worn. We could ask no more of him. Rich and I wept and wept. I prayed and begged God to change things, to save my little boy's earthly body.
Monday night Dr. Swoboda went back to her hotel and Rich and I stayed with Hodges all night. We stayed up almost the entire night. We were trying to soak in every minute we had with him. He was sedated the whole time as he would not tolerate the breathing tube when awake. The next morning lots of family and friends came to say goodbye to Hodges. It was all so surreal. I was fully aware of what was going on and yet I was strangely calm. I had prayed the night before for God to cover us and so He did. Finally about 9am we had Kensington help us take molds of Hodges feet and we painted both their hands and did their handprints right next to each other on paper. Then with no one else in the room except the three of us, we explained to Kensington that Hodges muscles no longer worked and that he had to go to heaven to be with Jesus and Jacobsen. We then asked her if she wanted to stay while Hodges went to heaven or to go out to the waiting room with all of our family. She at first said she wanted to leave which we said was fine and Rich started to take her out to the waiting room and then she changed her mind about half way and decided to come back. We had consulted with many people and all had suggested to us to let her decide how much she wanted to be present for everything, so we just let her lead the way.
Finally with just the three of us and Dr. Swoboda (we asked that she stay with us) in the room we said our goodbyes. We rubbed his soft blonde hair and wept. The doctor, nurse and RT came in. His RT for that day had requested to have him because she had taken care of him so many times before and we were grateful that she was there as we were so comfortable with her. They had Hodges even more sedated than before so there would be no struggling or gasping for air and then they finally took the tube out. They handed him to me in a chair and Rich held Kensington right next to me and Hodges. We all cried. The doctor, nurse and RT included. I held him and told him it was ok to go and that Jacobsen and Jesus were waiting on him. Rich and I continually talked to Kenz through the whole thing. Asking if she were ok? Did she want to go out to her cousin Charlie in the waiting room? Each time she said no. She came over on her own and took one of Hodges blankets and very carefully wrapped it around him and tucked it under his body. HIs little body had no reserve and he passed within 15 minutes. Kensington asked "is Hodges in heaven now?" We said yes and she said "Good, daddy I want to go to the toy store downstairs now"! Rich took her to the waiting room where her aunts and uncles took her to the gift shop and spoiled her! While she was gone lots of other family came back and spent time with us. We all took turns holding Hodges and had several sweet, sweet prayers. Finally it came time to leave. There was no more we could do or say. This just like with Jacobsen was the hardest part for me. I knew that Hodges was already gone and that this was just his body but the finality of leaving and never seeing those precious little hands or gorgeous blonde hair again felt like it could break me. Dr. Swoboda was going to be spending the day at the hospital doing an autopsy on Hodges so she graciously asked if she could hold him after we were gone. I finally handed him over to her and after multiple attempts to leave finally left him. Once again I just wept. I could not believe all that had just taken place and that my once vibrant, opinionated little boy was gone. Rich and I walked out of the hospital hand in hand, with our family and friends and the song that was in my head was "Victory in Jesus"!

Here are the lyrics that were in my head:

O victory in Jesus,
My Savior, forever.
He sought me and bought me
With His redeeming blood;
He loved me ere I knew Him
And all my love is due Him,
He plunged me to victory,
Beneath the cleansing flood.
I heard about a mansion
He has built for me in glory.
And I heard about the streets of gold
Beyond the crystal sea;
About the angels singing,
And the old redemption story,
And some sweet day I'll sing up there
The song of victory.

Hodges' Service

2010-02-03T21:04:00.002-05:00

Today was a busy day filled with going to the funeral home, to the church, and a couple of other places to get things planned and ready for Hodges' service. We finally have the plans nailed down. We are going to have a service for him this Saturday, February 6, 2010 at 4pm at First Baptist Jonesboro. We are not having a formal visitation but we will be there a little before the service and we will stay after to visit with everyone. We are also asking that in lieu of flowers donations be made to:

SMA Kids Fund
c/o Kathryn J. Swoboda, MD
Pediatric Motor Disorders Research Program
University of Utah School of Medicine
30 North 1900 East
3R413A-SOM
SLC, UT 84132-2305 USA

SMA has forever changed our lives, and there is nothing more that we want than for a cure to be found! Thank you so much to everyone for your continued love and support! We have literally been awed by the outpouring of thoughtfulness and concern, and we will forever be grateful!

Remembering

2010-02-02T22:59:00.004-05:00

Here are a couple of pictures from our professional session back in December. Jenn McPherson did an amazing job and we will forever be grateful for the photographs of Hodges and our family. I had been waiting to post these until I had gotten all the images from her but as I was looking at them and remembering Hodges I thought I would share. Thank you again to all the kind, kind messages of love and support. The Lord has truly blessed us by having so many eager to walk this road with us!

Hodges Chip Manross

2010-02-02T10:31:00.002-05:00

Hodges Chip Manross, went to be with the Lord at 10:08AM this morning. We praise God for the gift of almost 15 amazing months with our precious little boy! Thank you to everyone who has loved on us and lifted prayers up on our behalf!

Victory in Jesus!!!

Hospital Stay 4, Day 6, 4:27AM

2010-01-31T04:26:00.006-05:00

I have been wrestling with what to write about Hodges. The poor little thing has had a very, very rough go. The past four days have been so many extreme ups and downs. Several times if it had not been for intense intervention Hodges would have died. Finally yesterday morning, Hodges had to be intubated. It was either that or let him go. Rich and I were at home and Rich's mom was at the hospital so we decided with intubation, to give us more time to assess Hodges and make the best overall decision for him. Before Hodges even was sick the past month we had noticed he was weaker in several different ways. So we knew this sickness was going to be more challenging then any we had ever faced. Our top priority right now is Hodges' quality of life. As Rich and I started to discuss what is best for Hodges long and short term, we right away called Dr. Swoboda. As we brought her up to date on everything and asked her for her opinion, she began to cry and said "I am coming, I want to be there". We never would have expected her to come and to say the least we are grateful and anxious for her arrival. I think Rich and I have a pretty good idea of where Hodges is but to have her who sees SMA children daily come and help us sort out what clinically is going on and likely for Hodges future is such a relief! Im not sure when she is going to arrive for sure, but probably Monday or Tuesday. For now, Hodges is mostly sedated. We have tried to sedate him just as needed so we could see those beautiful blue eyes and have some interaction with him, but mostly he has not tolerated that so we are left with him sedated. He is on a lot of oxygen through the vent and still when moved he is desating pretty fast and when awakened his heart rate is going really high. He has also had a temperature through out most of the day.

I do not think I can even begin to articulate how tough all of this is. I thought going through it once with Jacobsen would prepare me and I would be ready for all the talks we have had today. I was wrong. This is my child. I can not even put into words the anguish our hearts are feeling. I want him here, I want him to continue to be our smiling little boy who has brought so much joy to our lives that I will forever be a different person because of the amazing gift of being his mother. But we also do not want him in pain, and for every day to be such a struggle. We are still praying for a miracle and asking that God guide us every step of the way in making decisions.

I will update as I can. Thank you to everyone who has stopped and prayed for Hodges and our family. Thank you so much for all the messages, texts, and phone calls! We are so grateful for such and amazing support team of friends and family!

Psalm 17:6-7
I call on you, O God, for you will answer me; give ear to me and hear my prayer.
Show the wonder of your great love, you who save by your right hand those who take refuge in you from their foes.

Hodges is being Intubated

2010-01-30T05:40:00.000-05:00

Hospital Stay 4, Day 4, 9AM

2010-01-29T09:01:00.003-05:00

A very rough night for Hodges. At one point we thought we were going to have to make the decision to intubate. His poor little body went through so much. He is much better this morning but we both are exhausted. Hoping for a much easier day for him!

Hospital Stay 4, Day 2, 1:00PM

2010-01-27T13:05:00.002-05:00

Today has been a great, non-eventful day! Hodges sats have been extremely stable, he has been awake more and smiling! He is having his therapies every three hours so still not lots of rest for either of us but man what a relief to have him doing so well! They took an x-ray this morning and the left lung that was hazy before has started to clear up. He is still quite junky but we are heading in the right direction. Thank you so much for all that pray and think of our family continually!

Hospital Stay 4, Day 1, 6:50 PM

2010-01-26T03:44:00.004-05:00

Hodges had a chest x-Ray and his left lung looked partially collapsed. We are now in a PICU room and Hodges is doing pretty well. He does really well for a little bit and then he struggles for a little bit. His chest is very junky sounding and it has been hard to try and get stuff out to clear him. This morning we finally got to our room at 3:30am and Hodge and I finally went to sleep around 5:30. We were back up at 7:30 and surprisingly we were both ready to go. Rich came this afternoon and I came home to shower and sleep. I just talked to Rich and he said Hodge has rested lots and has had a pretty good evening. I am about to head back up there and Rich will come home to sleep and see Kenz. Thank you so much for all the prayers lifted up on our behalf and for all the thoughtful messages sent our way!

From good to bad

2010-01-25T16:44:00.003-05:00

Hodges has gotten worse. He can not hold his sats up while he is sleeping even with 3 liters of O2 through his bipap machine. We talked to his pulmonologist and of course they want him to come in. This is what is best for him and I should be used to it by now but for some reason I can not stop the tears from coming.

RIch is on his way home so we are waiting for him and then heading up to the hospital.

Please continue to pray for Hodges and our whole family!

Hodges

2010-01-25T14:11:00.007-05:00

Our whole family has had a cold/sinus infection for the past few days. Of course Hodges has gotten it too. We were up all night with him and this morning he seemed to only be getting worse. About two hours ago I put him on some oxygen and finally his numbers stabilized. He is finally resting which is really good news! We also just talked to his pulmonologist and they are calling in an antibiotic to start him on. I was already packing bags for the hospital but as of now I have stopped and am actually thinking we might handle this from home. Kenz is at the doctor for the second time in a week with the same junk that she just can not seem to kick. Hopefully both babies will be on the mend from here on out!

Catch up from the last week

2010-01-17T20:49:00.003-05:00

So we have had a very busy week and there are a couple things I have not had time to blog about. The night before I got my wisdom teeth out it snowed here In GA this is a VERY big deal, even though there was not even an inch of accumulation! Here are some pictures of Kenz:

Also the Sunday after I got my wisdom teeth taken out I was playing with Kenz in our bedroom. I was feeling so much better so I was up for playing..or so I thought! I should start here by saying when I had my wisdom teeth taken out I was prescribed Hydrocodone for my pain. I had taken it regularly and while it made me feel a little whoosy I really had not felt disabled by it. I should also say here that no one told me that Hydrocodone could have powerful affects on people and most should do little to nothing while on this drug. SO to get on with the story Sunday I had only had one pain pill early on in the day. That night I was running in the bedroom with Kenz and while trying to throw something in the trash can I ran SMACK into the corners of two walls! I did not see the walls coming, nor do I remember hitting the walls. All I remember is suddenly I was no longer moving and my head was in excruciating pain. I thought for sure I had cut my head open but luckily as Rich came running he assessed there was no blood, just a big red line on my forehead where I had hit the corner of the walls. I laid down and rested for a couple hours. I did not feel nauseous or feel like I had to sleep so we decided no trip to the hospital was necessary. The next day I felt awful. Now not only did my gums hurt from having my wisdom teeth out but I also had a splitting headache. My mom took care of the kids all day and I rested. That afternoon and evening I started to become more and more sleepy and I felt sick to my stomach. I kept thinking about how the actress Natasha Richardson died from a fall and finally I told Rich I think we need to go to the ER. We went to our local ER and when I walked in they said it would be six hours till I could see a doctor. Luckily it only took three hours and after a CT scan that looked perfectly normal they said it was probably a slight concussion. The best part of all of it as I probably saw three different nurses, a PA and doctor and they all were in awe that I was up running while on a drug like Hydrocodone! They all said I should not be up walking hardly much less running :) The nurse that discharged us asked if I would like a prescription for pain. I practically yelled "No way"! I said that crazy pain medication is the stuff that got me here in the first place!!! For now on I am sticking with my good ole Ibuprofen:)

Help SMA Research win 1 MILLION DOLLARS!!!

2010-01-16T09:59:00.001-05:00

This is IT! Final round voting for the Chase Community Giving campaign on Facebook IS LIVEand runs through January 22. Below are simple instructions on how you can vote for the Gwendolyn Strong Foundation to help make a $1M MIRACLE an SMA reality.

Please dig deep, be shameless, and go the extra mile to bring this home for all of those impacted by this cruel disease. We can't do this alone, but together we can make this happen!

NOW, GO NUTS!!

VOTING - simple instructions on how to VOTE!

Go to VoteForSMA.com -- This will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook. This is where you vote. Click on the "Vote For Charity" button to vote.
You must have a Facebook account to vote. If you don't have a Facebook account you can easily sign up for one by going to VoteForSMA.com and following the simple Facebook signup instructions.
You may only vote for Gwendolyn Strong Foundation once, but GO NUTS! telling anyone and everyone you know to go to VoteForSMA.com to vote for the Gwendolyn Strong Foundation.

EMAIL - copy and paste the text below into an email and send it to everyone you know (You can write your own more personal letter -- we just wanted to help make it easy)

Dear Friends:

This is a personal plea! A cause that is very important to me has a real opportunity to win $1M to help CURE Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. I'm asking you to do two FREE things that will take you less than a minute and will help turn this $1M MIRACLE into a reality:

(1) VOTE ---> Go to http://VoteForSMA.com and take 20 seconds to vote for the Gwendolyn Strong Foundation in the Chase Community Giving campaign on Facebook.

(2) FORWARD THIS EMAIL ---> Forward this email to at least 20 personal contacts and ask that they do the same.

Thank you so much for your support. We can't do it alone but together we will help CURE SMA forever!

FACEBOOK STATUS UPDATES - simple instructions on how to spread the word on Facebook

Do this every day during the final round of voting from Jan. 15-22.
Go to VoteForSMA.com -- this will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook.
In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Add To Profile" button.
A new box will pop open.
Add a personal comment if you wish in the white rectangular box.
CLICK "Publish".

INVITE YOUR FACEBOOK FRIENDS - simple instructions to make a personal plea to invite your Facebook "friends" to vote for the Gwendolyn Strong Foundation

Go to VoteForSMA.com -- this will take you to the Gwendolyn Strong Foundation Chase campaign site on Facebook.
In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Invite A Friend" button.
A new box will pop open.
Check the boxes next to the "friends" you want to invite.
CLICK "Send Charity Voting Invitation".

TWITTER - if you have a Twitter account, simple instructions are below to tweet messages to your Twitter followers (you may be asked to login to Twitter after clicking one of the HERE links below)

Click HERE to tweet the following ---> I voted for @GSFoundation to make a $1M MIRACLE a reality and cure a disease. http://VoteForSMA.com
Click HERE to tweet the following ---> My child is dying of SMA and 20 seconds of your time WILL help CURE it. http://VoteForSMA.com
Click HERE to tweet the following ---> YOU can help CURE the leading genetic KILLER of young CHILDREN, SMA. Be part of a MIRACLE. http://VoteForSMA.com
Click HERE to tweet the following ---> What would you do with $1M? I'm helping CURE a disease. Forever. Be part of the MIRACLE. http://VoteForSMA.com