I hurt tonight, I was doing so good but then I made the mistake of reading about leukodystrophy and I lost it, I lost control. I am having a hard time facing the truth I'm having a hard time excepting because right now things are as they were just a two year old that can't walk. One day at a time, I need prayer to sleep, I'm struggling. He needs a miracle, in times when I want to yell why God and be mad at him I find myself asking my same God for healing for Reed, for treatment, for that miracle that I know only God can provide.
Friday, March 13, 2015
Updates From my Facebook Page
Here are few updates on how are weeks have been going that I posted to my facebook page.
2/28/15
Reed had a good day yesterday cousin Lily-Belle and aunt Colleen and a few other friends came out and played for a little bit. Which was really good for him. We had a doctors appt and saw aunt Becca the appt went good it was more to just talk to our local doctor and will be nice to have a middle person between us and Iowa City. Reed personality seemed more himself then it has in the last week. Mom and dad continue on a roller-coaster but we keep telling ourselves one day at a time. Again thank you for all your prayers they are much need, and thank you for all the loving support.
3/7/15 Just a quick Reed update on how his week went. We had an up and down week well maybe just mom did. Week started out with more blood drawn that is being sent up to mayo. He also started more extensive therapy at EDI, which went good he was pretty clingy but I think as he gets used to it, it will be really good for him. This was hard for me though just watching and thinking about what this means. We will go to therapy once a week. We had one day this week where the evening didn't go so good Reed acted like he was in some pain, red in the face crying and not able to get comfortable but he eventually calmed down and played like normal. There have been some good things Reed seems to be learning new words everyday and we hope that this will continue and he will maintain this, and yesterday at daycare I was told he did a lot of standing which I haven't seen him do much of in days, this was really encouraging for me to hear. I am becoming a logistic specialist getting all the appts scheduled, I am trying hard not to overload him because I think all the appts lately have stressed him out. I had couple bad nights where I let my thoughts get the best of me, but we continue to take one day at a time. We continue to pray hard and often and ask for God's guidance and comfort during this time. We can not say thank you enough to you all for everything you have done or are doing for our family, we love you all and you are just as much in your thoughts and prayers as we are in yours.
2/28/15
Reed had a good day yesterday cousin Lily-Belle and aunt Colleen and a few other friends came out and played for a little bit. Which was really good for him. We had a doctors appt and saw aunt Becca the appt went good it was more to just talk to our local doctor and will be nice to have a middle person between us and Iowa City. Reed personality seemed more himself then it has in the last week. Mom and dad continue on a roller-coaster but we keep telling ourselves one day at a time. Again thank you for all your prayers they are much need, and thank you for all the loving support.
3/7/15 Just a quick Reed update on how his week went. We had an up and down week well maybe just mom did. Week started out with more blood drawn that is being sent up to mayo. He also started more extensive therapy at EDI, which went good he was pretty clingy but I think as he gets used to it, it will be really good for him. This was hard for me though just watching and thinking about what this means. We will go to therapy once a week. We had one day this week where the evening didn't go so good Reed acted like he was in some pain, red in the face crying and not able to get comfortable but he eventually calmed down and played like normal. There have been some good things Reed seems to be learning new words everyday and we hope that this will continue and he will maintain this, and yesterday at daycare I was told he did a lot of standing which I haven't seen him do much of in days, this was really encouraging for me to hear. I am becoming a logistic specialist getting all the appts scheduled, I am trying hard not to overload him because I think all the appts lately have stressed him out. I had couple bad nights where I let my thoughts get the best of me, but we continue to take one day at a time. We continue to pray hard and often and ask for God's guidance and comfort during this time. We can not say thank you enough to you all for everything you have done or are doing for our family, we love you all and you are just as much in your thoughts and prayers as we are in yours.
Wednesday, March 11, 2015
Monday, March 9, 2015
Staying A Float 2015 Day 7 and 8
This is one I need to hear and keep close to my heart right now.
Team Reed Events
Again we have such amazing people in our lives, we can't thank Jared Bucknell enough for all he has done. He has put the wheel in motion for some amazing events to help support Reed and Reed's life. There are #TEAMREED bracelets for sale, as well as #TEAMREED shirts.
The wheels are in motion for a Team Reed golf/dinner/silent/live auction on June 20th at the golf course. We know little about the planning process but from the little bits I have heard the event is going to be amazing and I am just in shock over the generosity that people have given to our family. As I get more information on this event I will share, but if you have questions Marci Dahl is also helping Jared with the planning as well
Jamie Even asked me if she could plan a 5K for Team Reed, she thought it would be a great way to get some of the younger community members involved or maybe those that don't golf. I agreed, thinking of all my volleyball players :) It looks like this event will be held early May, and again as I find out more I will pass on the information.
Both of our employers have been so amazing as well, and we feel great comfort knowing we work for such amazing companies like VGM and Farmers State Bank.
Again thank you, thank you, thank you again, I can't say it enough. We are feeling all the love around us, thank you for wrapping us in a massive imaginary hug!
The wheels are in motion for a Team Reed golf/dinner/silent/live auction on June 20th at the golf course. We know little about the planning process but from the little bits I have heard the event is going to be amazing and I am just in shock over the generosity that people have given to our family. As I get more information on this event I will share, but if you have questions Marci Dahl is also helping Jared with the planning as well
Jamie Even asked me if she could plan a 5K for Team Reed, she thought it would be a great way to get some of the younger community members involved or maybe those that don't golf. I agreed, thinking of all my volleyball players :) It looks like this event will be held early May, and again as I find out more I will pass on the information.
Both of our employers have been so amazing as well, and we feel great comfort knowing we work for such amazing companies like VGM and Farmers State Bank.
Again thank you, thank you, thank you again, I can't say it enough. We are feeling all the love around us, thank you for wrapping us in a massive imaginary hug!
Friday, March 6, 2015
Community Support
Even during our hardest time,we have been surrounded my so much love. There have been so much community support given to our family. It surprises us every day, I have probably shed just as many tears of thanks and gratitude for all the amazing gestures. Wristbands have been ordered, t-shirts are in the works, a golf tournament silent and live auction and dinner are being planned. Cards, donations, messages, texts, new toys for Reed, gift cards for us, people praying so hard and deep for us from all over the country. So a HUGE THANK YOU to everyone we wish we could thank you all individually, please know in our hearts that your prayers, thoughts and generosity for our boy or so greatly appreciated. Our hope is that we will be able to give back some day just as much as we have received and more...
We have big plans for Reed this summer, try and make the most of what we can while we can. Lots of bike rides, walks, softball games, lots of swimming in our pool, camping, a garden and I am sure more.
ONE DAY AT A TIME is my new motto, the last two weeks have been very dark and difficult but precious Reed keeps living on like its just another day. He is happy, and goofy, he wants to play and experience things, one of his new favorite words is "see" and he squints is eyes to exaggerate that he wants to SEE what we are doing or looking at, he wants to snuggle more then he has every before and I am loving that. So in our dark moments when he might be struggling or we are; we try hard to STAY STRONG for our little boy.
Here is today’s #stayingafloat2015 verse:
We have big plans for Reed this summer, try and make the most of what we can while we can. Lots of bike rides, walks, softball games, lots of swimming in our pool, camping, a garden and I am sure more.
ONE DAY AT A TIME is my new motto, the last two weeks have been very dark and difficult but precious Reed keeps living on like its just another day. He is happy, and goofy, he wants to play and experience things, one of his new favorite words is "see" and he squints is eyes to exaggerate that he wants to SEE what we are doing or looking at, he wants to snuggle more then he has every before and I am loving that. So in our dark moments when he might be struggling or we are; we try hard to STAY STRONG for our little boy.
Here is today’s #stayingafloat2015 verse:
Thursday, March 5, 2015
Dark Place
I’m in a pretty dark place the last few days, last night
when we got home for the night Reed was very uncomfortable even in my lap he was
still doing circles trying to find the perfect spot. Then the crying started, heavy crying, red in
the face crying. I couldn’t figure out what was wrong how to make him happy or
comfortable, was he in pain and he couldn’t show or tell me. Does he even
know? I tried getting some Tylenol in
him but he fought me on it and I just held him the best I could. Then I started to slip into a dark place,
feeling of guilt, feeling of I did this to him I gave him this disease my
genetics is causing him to die. Then I
noticed his struggles to stand now, in just a little under two weeks Reed has
gone from being able to stand and take maybe up to 10 steps to having struggles
to stand on his own and some struggles with standing and holding on to
something.
How is this happening and why
so fast all of a sudden is it the stress of doctor appointments that we are
putting him through that is causing this quick digression or is this disease
really going to move along this quickly?
I feel so helpless, I feel so hopeless, I feel guilt, I feel mad and
sad, I feel sorrow, I feel for my little boy who doesn’t understand what is
happening and probably never will. Sleep has not been restful for me the last
few night and I lay awake and think which is the worst thing for me to do. We started therapy today and watching my baby
cry out to mama and struggle with what we all think of and take for granted as
the simplest tasks like walking really sunk me lower. Watch him try to walk
with the help of a walker today made me realize that my little boy will never
walk again here on earth. Therapy was
good for him but bad for me, it will help him I believe and once he is
comfortable with it I pray/hope that the cries for mama won’t be as
often. In my attempt to try and find
some positives he is learning new words which is encouraging because I struggle
with his frustrations and trying to figure out his needs, my hope will be that
he will learn and be able to tell us his needs still or for as long as
possible.
With the dark days they are followed by good days, we started out the week really well two really good days in a row, Reed's personality was back he was his happy and playful self again. Which followed by a bad day maybe not so bad for Reed but hard on Jesse and I. Today started out not so good with the struggles of therapy but we ended the night good, playing and having a good night together. Here is to the hope tomorrow is another good day, ONE DAY AT A TIME.
Here is today’s #stayingafloat2015 verse:
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