Thursday, February 13, 2020

10 years ago...

10 years ago today Brian walked in the door after work at 6:00pm 15 mins later then I was expecting him.  I was overwhelmed, tired and exhausted.  Joshua had been running a fever off and on for a few weeks no one could figure out what was going on every test we gave was negative, no ear infections, no real reason why.  He wasn’t able to communicate to us what was wrong.  The doctor even had us keeping a fever journal so we could try to get some clues.  Jackson was out of preschool that day he was almost 4 and loving being home with mommy to play all day...Joshua was 11 months old and he was miserable that day.  He was teething, sick, wouldn’t nap, and just kept screaming and I could’t soothe him in anyway and he was in dire need of something but we couldn’t figure out what.  Brian coming home later then expected was not an issue except that I was going out of town that night. I was headed to a Creative Memories conference in Baltimore MD.  It was the first time I’d been away since August.  The group of us had rented a charter bus and I was supposed to be there at 6:00.  They were holding the bus for me.  Brian walked in the door I gave the kids a kiss goodbye handed Joshua off to him who I hadn’t put down in over 3 hours. Grabbed my bags' said “I love you and good luck”...  we both laughed as I walked out the door.  I got to the bus sat in my seat, took out my headphones and took a huge sigh of relief.  I was FREE!!! I was going to be around adults for 48 hours I didn’t have to drive, we were going to eat nice things, wear clothes that looked nice and shower for as long as we wanted.  I was gonna hear from amazing sales and recruiting pros and even be recognized for my own achievements.
Why am I telling you all this? Because I was relieved to be getting away and taking a break and about being kid free, and everyone else felt the same way.

Brian called me later that evening and told me that Joshua seemed more sick then when I’d left.  He and I made a joke about the fact that he might have to  call the doctor and that I was the lucky one.  A few hours later Brian called and said Joshua had fallen out of the crib? What? He had never even tried to climb out it didn’t make sense. We laughed and said momma goes away and everything falls apart.  Brian said he had called the doctor and they said keep an eye on him watch for x,y,z and since Brian was a current EMT with Virginia Beach they said keep him home instead of going into the er and picking up germs there. Joshua was fine, well as fine as he was when I had left that day.  Made perfect sense... it still does.  We talked a couple of times but Brian had it all under control.  Brian assured me several times there was no reason to try and get home some how and that everything would be fine.  Again I was thankful he was okay and relieved to be away.  I went to sleep that night, woke up the next morning, took a long shower, I was on my way into an amazing breakfast at 7:30 am  when I got the call from Brian that everything was not okay, and that they were at CHKD and Joshua was almost unresponsive.  I was in Baltimore, during a snow storm, and I’d taken a charter bus to get there.  The next 3 hours were a blur while I waited to hear updates from Brian and my parents.  The first thoughts were that he had sustained damage from the fall that didn’t show up right away, then it was that he was just very dehydrated from the flu, and finally the diagnosis that changed our life... Type 1 Diabetes.

The guilt I lived with for the first few weeks , months and years about being so relieved and so excited to leave that Friday night, The guilt about not being the first one at the hospital instead being the last one of my extended family to be there, the guilt about arriving my son in the PICU and the nurses asking if I was mom because they hadn’t met me and it had been hours haunted me for a very long time.  However the reality is that I had no idea what was going to happen, I had no idea how close we came to losing our baby.  It was perfectly okay for me to be excited to take a break to be away and to feel relieved that I was “tapping” out when one of the kids weren’t feeling well.  Here is the thing- we always think about if I’d only know, or we are told live each day as though you won’t get another... yes that’s true but the reality is we are human... we are going say, do something, or feel something with out knowing it might be the moment before the new normal starts.  I have in the last 10 years tried to come to terms with how I felt heading into that weekend. If your holding on to some guilt for something that was completely understandable, I want to encourage you to let it go as well.  Learn from it do what you can but just know that none of us have a crystal ball and it’s easy to say what we would have, could have, or should have done.

Edited to add I appreciate all the sweet comments but I really just felt I needed to share because my story is no different then any other parent who has missed a tragic event, did not know it was the last hug or the parent traveling for business when something life changing happens.  My hope is that the person who is carrying that guilt will read this and know your not alone, and it is okay that you weren’t there. We know you would have been had you known.

***The photo below is the one that was sent to me while I was headed back to town.

Monday, May 27, 2013

Growing up and letting go

Just a few short weeks ago I signed my little man up for his first year of preschool..  He has just turned 4 years old and REALLY wants to go to preschool.  This last year I have been homeschooling him and he has done very well.  Knows all his letters, counts to like 50, knows his sounds, writes his name and if I spell things for him he writes his words.  He can read some of the BOB books.  There is nothing lacking educationally... however since we moved 2 years ago he misses his friends! We have joined MOPS, we do a ROMP n Roll class weekly, but we havent really met the kind of friends we had back "home" The ones who we did EVERYTHING with.  Every weekend we had people over or we were over there... He had his best friends.  He sees his big brother making great friends at school and so in his mind he gets friends from school.  He is partly right!
Now don't get me wrong... I am not paying for preschool just for my son to meet people, this will just be an added bonus.  One of the biggest reasons is because in a blink of an eye he will be headed off to Elementary School.  Here kindergarten is a FULL day program from 9-4.  This means he will be in the care of someone else to manage his health and keep him alive.  Can it be done?? Of course.. there are millions of you who are sending your most prized loves to school everyday saying a prayer and trusting someone else to take care of them.  For Joshua and I this will be such a new experience. In the last 2 years we have had 1 person watch him outside of my husband, myself, or grand parents.  We had an entire support system where we used to live. We had a training at our house. we had people who WANTED to learn how to care for him.  WE left that, and have not found a replacement yet. So our preschool year will be a year for us to grow, trust, pray and work out the kinks in teaching someone else to keep my son alive. I think we both need it to be able to adjust. He isnt shy or have any seperation issues... He will be standing at the door waving me off saying okay MOM LEAVE please!!! But we will need the year to prepare for a full day of someone else getting it right with the diabetes! Right now at his romp and roll class it is a 2 hour class and he takes it alone.  I sit in the car or the waiting room and come and test him at the 1 hr mark.  I am sure starting in September and for the unforeseeable future I will be sitting in the preschool parking lot too waiting and praying.

We are at the point where Joshua is figuring it out that he is different and that things don't work the same for him.  He was dxed so young (11 months) that everyone said... "oh hell be so lucky he wont know any difference" YEA right... My 4 year old knows plenty of differences... He says all the time I WISH I DIDNT HAVE DIABETES!  So preschool will be just one more reminder for him that he is different and things work different for him, I am scared of the judgement, the not getting to know how awesome he is because they are too worried about the diabetes.
what did you do? How did you "let go" when it was time for school?.

Sunday, September 9, 2012

For Meri...

I have wanted to start this post so many times, but unsure of how to say it I stop.  Even now, I am so unsure of my words and getting my meaning across that this blank screen is so daunting and scary.  What can I say that hasn't already been said by the great writers of the DOC- Wendy, Renya, Laura, Hallie, Heidi and Nicole and sooo many others?  What will my words add to this day?  I am STRUGGLING to find the words to say I am sorry, I am sad, I am grieving for you.  

When Joshua was first diagnosed and I started my blogging adventure, Meri was one of the first to welcome me on board and wrap her internet arms around me and surrurond me with love.  Her blog was one of the ones that helped me to see my sons new diagnosis in a NEW light and in a workable light.  

Ryan and Meri were an inspiration to Brian and I.  We would read Meri's blog and I could be quoted as saying... If Meri can do this so can I.  It wasn't long after that they became known in my home as just Meri and Ryan. There was no need for last names, no need for blog names... it was just Meri and Ryan. As though we had gone to college with them.  

When Ryan was diagnosed earlier this year, Brian and I prayed for them, our children prayed for them and as we all did we opened up our other friends to their life and begged for prayers.  We talked about them so much on FB that they started to just be known as Meri and Ryan accross all of FB.  Their legacy in the life of all our friends and family will be there forever.  I think that the number of people who have been touched by them is to large to even think about. 

One day there may even be a 7 degrees away from Ryan and Meri...  This may not have been the way they would want to impact the world but it was the path that was chosen for them.  

Through Meri's journey over the last few months, we have had friends who have chosen to pray when prayer was not always their path, we have had friends learn more about what T1D is and its ability to affect multiple children in one family. We have had friends who have told me that it was a reminder to tell your spouse you love them every day, and in my own relationship... it has reminded me to be a better wife.. (or at least try) and to remind me to be grateful for what I have and not be concerned with the path I am on.  

When I woke up on Sept 2nd we went to church and joined the rest of the DOC in prayer for healing and peace for Meri, Ryan and the boys.  I went on with my day but they were there on my mind the entire day.  Later when I opened Facebook, my heart stopped... It broke for Meri, for the boys and for everyone Ryan touched in his life.  I had messages from my mom, messages from the DOC and messages from friends who had just heard about Ryan and Meri from FB and had added them to their prayer lists...  almost all the same- Ryan was gone.  Instantly tears started coming.  Not for Ryan- but for those who were left here.  For Meri who was spending the first night with out her husband.  I have read stories that he tucked her in every night, that they were each others hobby, that they were everything to each other...  That for the first time she would be with out the love of her life, her best friend and her puzzle piece.  I cried for the boys- the 4 amazing children that he has helped mold in to gentlemen.  I cried for the innocence that is lost when you loose a parent.  I cried because no holiday will EVER be the same again.  I cried in anger that God would choose to take this man from this family when there was clearly so much left for him to do here.  I didn't know what to say to her... it all sounds so cliche... and yet... it was all we could say... and then we heard from Meri and we learned that she did get her miracle.  She says that:

"How everything happened last Sunday is so personal I can't write it down here, but I can tell you that without a doubt...we received our miracle.

I sit here completely humbled, and shocked. How God got away with this without me cursing him is the monumental miracle itself. Each detail of the last week was carefully seeded so that on the other side I could not deny this timeline was always set. It just wasn't for me to foresee."

Now my heart cries for the void that has been left, and for the doubts she has on her ability to get to the other side of this.  She can do this! She is strong and her faith is so STRONG it will carry her through even when her feet cant.  Today they layed Ryan to rest.  So many of us wanted to be there but California is so very far away, and yet it felt wrong not to be there to support her and love her.  We pray she is feeling all our love from afar.   What is next for this family??  Ryan was the soul income for this family of 6.  4 growing boys 3 with a life threatening disease.  In our family we pay over $870 in medical supplies to keep 2 type 1 diabetics alive A MONTH, I cant event dream of her out of pocket.  In addition to the future expenses... they have Ryan's medical bills.  They have food to put on a table, power to keep on, school supplies to shop for, and then you have life expenses to try and bring some sense of normal back to their life.   I know this is the month you hear me beg you to give to our walk team and help us find a cure.. I know that will be helpful to all of us in the end, but this family needs you RIGHT NOW...Would consider donating to both, sharing your gift with each of us, giving to JDRF in October and to this family now? Find an option that will work for you. 

ANY amount will make a difference in their life.  Consider donating your starbucks for the week, or plan to buy this family pizza for a night if you are on a budget right now.  Dont feel as though you have to give $1,000's by your self.  We are reaching all our arms out and hugging them.  "It takes a village"... and here is your chance...

To Meri-
My heart is aching  for you right now.  The legacy your husband has left is deeper then most people will ever leave.  Ryan's STORY is one that has impacted people all over the world and will be carried in their heart forever.  Your families faith, love and strength will be a lesson many will learn from and carry always.  I know you have said that you don't know if you are strong enough.. you are... but you don't have to be the strongest one around.  Allow others to be strong for you, relay on your faith for your strength. Allow Ryan to help guide you, allow God to carry you... Allow your friends to listen and cook and clean for you... We love you and pray for peace for you and your boys. That you will find a new normal for your life one day.
As I think of my own angel waiting for me in heaven 2 quotes always stick out to me.. They have carried me through some sad moments:
"May the Lord watch between me and thee while we are absent one from the other"
"Courage is Fear that has said it's prayers"

Medical Fundaising Made Simple

Friday, May 25, 2012

Joshua's Story- from Brians point of view

As many of you have heard I was not here when Joshua was first diagnosed.. I was at a conference 4.5 hours away in a snow storm.  I have shared my story before but Brian has just written about it from his point of view.  He saw images that day of our son that I pray I never have to see... he had to handle it with out me.  There are things I will never understand because I wasnt there and didnt have to live through it. I got the call, got scared and got in a car with my dear friend driving me home. Yes, I was away from it and could do nothing at all... but he was there living it and could do nothing at all.  HE saved our son that day.  He was my hero.  I thought you might like to see his point of view.  D Dad blog

Monday, May 14, 2012

D Dad!

So excited my hubby has been blogging again! if you havent checked him out before you should now..  Hes awesome, cool and has got a really great persecptive as a dad of a type 1 and a PWD himself.  Check him out: D Dad Speaks

Sunday, February 19, 2012

A sweet giveaway

If you havent done it yet make sure you head over to The Princess and the Pump and check out their "sweet" giveaway!!

Tuesday, February 14, 2012

2 years later

Well it is 12:07 am as I start this blog and I have been waiting for this day to end all day long.  Today marked the 2 year anniversary of Type 1 Diabetes for Joshua.  I've been calling it Hope Day as I have seen several of you do.  It seems fitting especially this year.

I was hoping for a cure, hoping to make it through with out breaking down a million times, hoping we had good numbers all day, hoping we didn't have to do an unexpected pod change, hoping I could rely on Dex today.  Hoping not to have a repeat of last years anniversary.

This year I think was so hard for me because Joshua has now lived with Diabetes longer then he has lived with out it. This was very sobering for me as we got closer and closer to this date.  I know many of you have children who this is the case for and I know he will be fine in the long run, but to think he is 2 short weeks away from being 3 and he has already had this disease for longer then he hasn't just breaks my heart.  To think he will not know life any different (until a Cure is FOUND), he will always know site changes, waking in the middle of the night, needles, highs and lows, attachments to his body, it breaks me down a little.  I know things could be so much worse and I know some say at least he was so young he doesn't miss life before... but I think this is just so much extra wear and tear on his body. This disease has so many things it effects and he will be affected by it for soooo long. All of this has been wearing on my heart as we approached HOPE day.

I am happy to announce we did great.  It was like most any other day in our house.  No big fan fair this year for hope day, (I was still recovering from last year,) and no big issues.  I was very happy.  I did do something brave today... Joshua is enrolled in a class called Romp and Roll. It is a little gym type class and we do music on Mondays well we got there in enough time for him to do the super hero class before our normal class, but this is a child only class.  So I let him go and I sat back in the waiting room close by with out any fuss. I was proud of myself.

upcoming posts: our move to Richmond, omni pod, dexcom, JDRF Walk-  I know I am WAYYYYY behind... but I hope to play catch up soon!