Bah Hum Bug!

When I don't write for some time it usually means I have so much going on in my head I can't focus enough to sit down and type it out.  I am still alive, but barley breathing...That is exactly how I feel.  The heaviness and anxiety set in yesterday morning, not that it always isn't lingering,  but I sure do know when it is going to be more of a struggle. I knew I had to make it through work Thursday so I pushed it aside as best as I could.  It all came apart last night into this morning, I have so much anger....

I really would love just a low key Christmas this year, but that isn't happening.   As I have mentioned before I usually am gone over Christmas with my family and that is our Christmas on a  white sand beach, what more could I ask for?  This year is so different and I am not good with change.  We will be celebrating with both families on Christmas eve and Christmas day.... I have anxiety just thinking about it.  It isn't that I don't want to be with family, Grief alone is exhausting but just thinking two days full of interacting, needing to be places at this time is just going to be too much.

 So why do I do it?  I have to, I know I would be letting people down if we weren't there and I do it for Jeff.  Jeff and I are grieving so different he likes to keep busy, he is all about Christmas and the shopping.  I can't ruin that for him, but  I am just not in it this year.  Nothing will take this pain away and most importantly nothing will bring Deaken back.  So I just keep going with the flow to make others happy.  I feel guilty for being like this and feel like the Grinch behind this computer, but really nothing will change the fact that a piece of me is missing, I don't want to pretend I am  happy when I am drowning inside.

Deaken would be 9 months today.  I remember the day like it was yesterday, waiting for him to arrive with so much Hope.  I never thought he would be taken away from us, I really thought he was going to make it. Why oh Why did this happen? We may never know, all I know know is I wouldn't be making through without having faith and knowing that God is carrying me through on this journey...That is what I cling to.

In Need....

I may have spoke too soon about feeling a little weight lifted, it was nice while it lasted.... Tonight my good friends grief and anxiety are back....  The heaviness, knots in my stomach and racing mind have consumed me, I can't sleep. 

When I got home from work Jeff asked what happened to make you feel this way? This just shows how different we are grieving...Nothing in particular has to happen to change my mood or feelings, I am just beyond empty inside.  I am having quite a bit of anxiety for this coming Monday.  The U is having a memorial service for those that lost a child from Jan.-April of this year,  I am not sure what to expect and not even sure if I will be able to walk in the hospital. Jeff and I don't know if this will be healing to attend or just set us back.

I believe God sends people in our lives in times of struggle and he knew I was struggling yesterday (Thurs.)  About a month ago a  patient was in and  I shared with her that Deaken had passed, she had instant tears and I knew that look to well....She also had a baby boy that passed, it has been 13 years but the pain for her is just like yesterday.   She came in last night for an appointment and brought me a very thoughtful gift, she also really wants to get together with me and hear about Deaken and wants to help guide me through this.  It has been 13 years since her son passed suddenly and she said it took her a long time to find some peace in her heart.  I do believe God has sent her to help me and I do look forward to getting together with her and sharing Deaken's story.

I know I wouldn't make it through without all the prayers.  I do have a few requests for those that could really use extra prayers:

Since Deaken I have kind of been wrapped myself in the heart community, keeping up with other heart babies and angel mommies.  This time last year there were quite a few heart babies born and unfortunately many that have earned their wings.  My heart is going out to all of those families, not only are they grieving the loss of their baby, but also it is the holiday season which makes things more of a challenge to make it through each day.  Please lift those families up in prayer...

An urgent prayer request for Jeff's Grampy, who was admitted into the hospital last night for a blood clot in his foot.  Jeff's Grampy has been through so much and always has a positive attitude.  Please pray for the doctors to have the knowledge to make the right choices and for the comfort and strength for Grampy.

With faith anything is possible!

A new feeling....

I thought I always write when things are not going  so well for me.  So I decided to let you all know  I feel like I have had a decent past four days!  I have had a rather strange last four days....I literally feel like my mind has put up a block, I feel as if I can't think about what has happened or what I have been going through, my flashbacks haven't crept up on me either.  Sounds weird I am sure, it is so  hard to explain.  I have had some good luck these past four days which may have something to do with it.  Maybe instead of dreading on all the bad luck we have had, I am rather focusing on the positives I have been given.  I am not going to lie it feels good to have a little relief lifted.  I know having a few days feeling this way though I may be heading for a crash.  I only say this because it seems when I do keep myself busy and don't give myself time to grieve is when I get hit with the heaviness.  I will handle that when it comes but for now I am continuing to take it "One day at a time!"

Thanksgiving.....

Today is a day of Thanks....  I have been dreading the holiday and would much rather stay home with my grief., I am trying to think of the things that are going right in my life vs. the negative things.  I am thankful for my health and for the wonderful people in my life. 

A very large black cloud arrived yesterday over me that I am struggling to get away from.  The tears seem never ending, my body is so heavy along with my heart and I am feeling not the best about myself.  Since Deaken has passed I have had the worst memory, but seem to remember every little detail of last year.  I am wondering if a day will come when I can think of all these little things and not feel so much pain.  I do have days when I can talk about Deaken and his journey, but other days when I it hurts too much.

The holidays are reminders for anyone who has loss a family member or friend.  For those that have lost someone who had been around the grief is of all the memories with that person.  With my grief it is of what  we are missing out on.  The hopes and the dreams for our family and for Deaken. 

A friend stated it very well...  She is thankful for something most take for granted, She is thankful for her two healthy girls.  Children are a gift from God.  With all the things that can go wrong while a baby is being made, it is a miracle that people have healthy babies. 

Instead of spending the day grieving by myself.  Jeff and I will be with our families, who are grieving Deaken also and want to be there for us.  I hope you all have a Happy Thanksgiving and hope you all find the simple things in life to please you.  Without Deaken life isn't fair , but I do have so much to be thankful for.

8 Months old........

It is so crazy the way the mind works, today I woke up with no feeling at all.  No ache in my heart, lump in my throat and no stomach knots...I just felt nothing.  I took the day off work and got a massage this morning and then I get home and that nothing feeling turned into more than I can take pain.  I can't believe Deaken would be 8 months old today, I would give anything to know what it is like to have an 8 month old. 

I am starting to feel like I am in my own little grieving world lately, time does move on and people too.  I just can't see past this pain and just wish I could skip these next few months.  Christmas is right around the corner and I am dreading it ( Go ahead call me the Grinch!)  My family for the past 8 years now have spent Christmas in Grand Cayman (I know poor me!).  Jeff would spend the week before Christmas down there and back home to spend with his family, so Jeff and I haven't spent actual Christmas together which I am happy to do this year.  I think just being home this year because we planned on Deaken being here is just a harsh reminder that he is really gone.

Happy 8 months old baby boy....Hope you are flying high with your angel friends.  Love you and miss you ever day.

Keeping the Faith

The past month our weekends have been full and busy.  It is nice to have plans but sometimes I just need some time to breathe, sleep in or just be! 

Jeff and I have been looking for a church to have a ceremony and one that we really connect with the pastor.  I think we found one! We attended last Sunday which was also All Saints Day.  They had a very nice service and Jeff and I each lit a candle for Deaken.  It was so welcoming and even though my eyes were not dry the whole time, my heart was so warm with love from God.  After the service Jeff and I sat down with the pastor who is a wonderful lady, we talked about Deaken and the emotions that we are dealing with since he has passed.  It was good to hear from her that all I am feeling and going through is normal.

 Grief is a roller coaster ride, unfortunately I am on it.  I will have good days and I will have bad days.
I am going through a lot of twist and turns and most downhill on my roller coaster ride right now.  With the holidays near my stomach is just in knots,  It is so hard to go through them when last year I was pregnant and I all I can think about is all the excitement with our families and how we would have a little one with us next year.  Yesterday the 13Th marked one year since we found out about Deaken's heart.  I remember the day outside it was so dark and cold, just a weird day.  It was also Friday the 13Th! My mom was with me at that appointment, that was the first time we heard about CHD.  Little did we know how much CHD would be a part of our life or how much it would effect us.

Each month on Deaken's dates they seem to sneak up on me.  I may be at a point where I am going slowly up on my roller coaster then out of nowhere it drops.  It has happened every month around the 12Th and the 17Th why am I surprised?  A friend brought he twins into work last week and they are such a blessing because she had some trouble having a baby and miscarried her first baby girl.  I truly am so happy for her, but I couldn't spend time to catch up with her and be around the babies which kills me.  I don't want anyone to feel they can't bring their babies around because I am there.  I hate that I can't be there for those friends that have babies and are healthy and happy, they should be able to show their little ones off.  I just don't get how I can truly be there show them I am happy for them when I physically can't be around them.  So on top of my grieving I am dealing with so much guilt for being a bad friend ( I know poor me).

Even though I have my ups and downs, all in all I think I hold myself pretty well.  Sure there are days I don't want to get out of bed or just want to stay home, but that is normal.  What kind of person would I be if I wasn't going through all these emotions, I just loss my son 7 months ago.  There is no time limit on grief,  I know that with some time and adjusting to our new life it may be easier down the road to cope.  As for right now I am doing what is best for me and taking care of myself and Jeff to get us through to each day.  Grief is a roller coaster ride and as my dad says life is a roller coaster ride, it makes us stronger.  There is bad things in life that will be followed with good things. ( I am waiting!)
Those that are reading, Thank You for joining me on this ride.

"I am strong because I know my weaknesses. I'm alive because I'm a fighter. I am wise because I've been foolish. I laugh because I've known sadness." -Unknown

A Little Poem....

My Mom's a Liar....


Ask My Mom How She Is...
My Mom, she tells a lot of lies,
She never did before.
But from now until she dies,
She'll tell a whole lot more.

Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.

Ask my Mom how she is,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night ?

Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom,
just tell the truth,
Just say your heart is broken.

She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am Here in Heaven.
I cannot hug her from here.
If she lies to you don't listen,
Hug her and hold her near.

On the day we meet again,
We'll smile and I'll be bold.
I'll say, "You're lucky to get in here,
Mom, With all the lies you told!

I wanted to share this.  I thought it went well with my last blog.

How are we????

"How are you?" Is a question I get often from those that don't know about Deaken and  just ask to be polite and those that do know, which I assume they are referring to how I am coping.  This question is good and reminds me you remember and are thinking of me.  To be honest I just don't have a simple answer and if I give you one I am lying.  I am not okay with not having my baby and the grief consumes my life, it is just constant.  My good  friend "Anxiety" is connected to my hip!  I feel like I can't do anything and need to prepare myself for anything that requires interacting with people... so everyday life. 

I have read that the first year without your loved one is the hardest... I can't imagine it getting any harder from here but can't imagine it getting any easier either.  In my life right now I am living in the past, I would say in the past year.  Everyday I try to remember what I was doing at this time last year and think about how my little seed was growing inside of me.  I had signed up for all the baby websites to keep me posted what to expect, which now is back firing because they like to still update me (even though I unsubscribed)  Deaken should be 7 months and 2 weeks and he would be  learning to recognize emotions and moods and maybe even giving kisses :( This just makes me sick to my stomach.... I picture his little "O" face he would make and thinking he wants to give kisses and I would kiss him right on his lips! Jeff thought I was weird but I am so glad I did.  I miss so much singing "You are my sunshine" and choking out the part "Please don't don't take my sunshine away" knowing it may be taken away.

Last year at this time we were getting excited to find out if we would be having pink or blue.  Looking back that was the only question we had at that first ultrasound.  You just don't expect that your baby my NOT be healthy.  Things will be much different if I get another chance, I won't even care if it s pink or blue.  Halloween is my favorite time of year.  I love to decorate, dress up and hand out candy.....This year I want nothing to do with it.  One of the first items we received for Deaken was a pumpkin bib from Jeff's mom.  I remember receiving it and picturing it on our baby this year.  Something so little as a bib sure can trigger a lot of emotion out of me.

I could go on and on about how I am feeling some may be wondering how Jeff is doing???  As I have said before and those that know him he keeps to himself with his grief.  I can tell when he is having a hard day or a day he is questioning why?  A few weeks ago he went back to work after being laid off.  The Sunday before I could tell he was taking it hard.  There just is something that you realize when going back to work, the world really is still moving on and being apart of that world makes you feel like you have to move on too, which when you are grieving isn't easy or maybe not an option in your mind (If that makes any sense).  Like I said before I live in the past right now, living in those 26 days with Deaken and I think maybe Jeff got a glimpse of what I have been talking about since I have been back to work.  It takes a lot out of me to be in a public work setting.  That Monday back for Jeff was a hard day, I could just tell.   He opened up at dinner that a few people asked if he had any children, which he did tell them about Deaken and I am happy he did.   Another co-worker remembered Jeff from another job site and remembered we were expecting, he asked how it was going being a father?  Jeff told him about Deaken too.  I am happy Jeff talked about it with others, I think it helps.  I asked Jeff if he was okay telling people and he said he was.  This is huge to me, Jeff is a man of few words but when he talks it is meaningful and comes from his heart (Usually!) that is why I love him so much<3

With all this emotion we have going on in our life we have found moments of peace and even time to have a little fun.  Jeff was a groomsmen in a good friends wedding this past weekend and we had a good time with friends and family.  We even got a little dressed up! which can help lift any ones spirits.

Feeling Down....

  Today is pregnancy and infant loss remembrance day.  I have my special candle lit and having all the angel babies on my mind.

 I am weak and feeling very hopeless, I can't believe what Jeff and I have been dealt.  How do we go on living our life and even think about starting a family.  Yes, I want another chance I want so badly to have a healthy baby, but what about Deaken? He won't be replaced with another baby.    Is it fare to have another baby to somewhat fill the void in our hearts? And is it fare if we think of Deaken when we see our next baby?  These questions I have no answers to and don't know what is right or what is the right way to look at the situation.

I haven't figured it out yet but for some reason I like to torture myself by going into the baby section at stores and looking at others baby's pictures...It is so hard to think I had that and it was taken away.  I have all the baby items and mom body but no baby.  It is just so unreal, so unfair (If that is even the word for it).
I miss Deaken very much...  I miss just staring at him in awe, I miss watching his eyes wander with so much curiosity, so much LIFE! Just wish I had more time with him.  Nobody should have to bury their baby.

Keep on trucking.....

Not sure where to start tonight, A lot has happened this past week/weekend. After my last blog last week, my week was a struggle but weekend ended on a good note which reminded me how much support we have.

I will begin to tell you about my Friday night... I had a crappy week and Friday's plan was to stay home and feel sorry for myself. My mother in law got great seats to the gopher hockey game and invited me along, so I decided that sounded better than plan A. As we were leaving the game and navigating through Minneapolis I started to recognize street names, places Jeff and I would eat and felt my stomach knotting up. I knew we were near Deaken's "temporary home" but didn't think it would have such an effect on me. I shed some tears on the way back to the house and waited until I got home to let myself fall apart (This I can only do alone). I have never felt this kind of pain as I did Friday night and Saturday morning. I wish nobody would ever have this kind of pain. The knots, heaviness, pressure, loneliness, fear, fog, failure....and so on... This I feel everyday but I guess not all at the same time which is just too much for one to handle.

I know I wasn't alone that night, I couldn't have been otherwise I don't know how I could make it through. I was just recalling the night we got the call that Deaken had "taken a turn for the worst" (I will never forget those words) The only thing I remember thinking on the drive back to the hospital was "If Deaken doesn't make it either will I, there is no life after him." I am not alone and feel I have been carried through. It is amazing the things you can get through even in thinking you could never, this goes for anything in life.

Saturday evening turned into another reminder I am not alone and many are thinking of Jeff, Deaken and me daily. It was quite a surprise when we showed up at Jeff's sisters house thinking we were just having a usual Saturday dinner, twins game and game night. Friends started showing up with the best surprise and gift ever! Thanks to the very best friends ever Deaken's name will be on the new memory wall at Target field! Jeff and I are speechless and so honored to be Deaken's mommy and daddy=) It means so much because not only are we Twins fans (even if they didn't win) Deaken's last day was on opening day April 12TH. We spent the day watching the game with him in my arms.

Yesterday marked 6 months without my little mutty boy. We know he is here with us and some I have told the stories about the little things that have happened to us. Last night we believe he was checking in on us again, letting us know he is okay and safe. To make a long story short Maize stopped going in her and Deaken's room after he passed and when she does she looks up at the crib and will do a short bark (If you know her you know what I am talking about!) Well last night as we were getting into bed and turning the lights out she started to do her short barking and went into the room looking up at the crib....this happened three times last night. Weird huh? well this also happened last month on the 17TH (Goosebumps yet?) This doesn't scare me it actually gives Jeff and I some peace, that he is here with us.

So very proud! We placed this on our mantel.  Special Thank you to everyone who made this happen=)
Amanda, Leiann, Lauren, Molly & Adam, Amelia & Adam, Jamie & Dan, Nellie, Brent, Drew, Tony & Tonya, Wachal & Angie, Julie, Amy, E Nelsen, Elizabeth & Ryan, Brink & Sabrina, Post & Suzy and our parents Scot & Lori and John & Kim.

Some People....

I have been frustrated this week... I usually blow off stupid things people say to me but I am getting real irritated at the last few things said to me. I get that people don't know what to say and may find it awkward to be around me. If that is the case I think I would rather be upset that you didn't mention Deaken than to hear you say stupid things that would upset me more.

Now I may take things the wrong way or think too much into what is said to me but please know when you ask "How things are going?" (Referring to Deaken) and I say "It is hard..ect.." and the response is "Really??" (In a surprised tone!) I would love to smack this person in the face with a shoe! Because I knew about his heart before hand it really shouldn't of been a surprise he didn't make it according to this person. This person also states I must have done something for Deaken's heart to be so wrong and shook their head in disbelief that there is no known cause for CHD. I cannot believe some people and how they just don't have any common sense... I am hurt by these comments and can't believe someone would have the guts to have a conversation with me like this...Just unbelievable.


Losing Deaken is not a sickness that I will get over, I will not get "better". I have my days when I can function just fine and some may feel like I am better. This is so far from what is really going on with me... In public or around others I have to hold it together, I fear of making things awkward. If I keep my mind busy I am able to function but I have found if I fill my days, weekends and stay busy there is a time when I crash...It hits me so much harder when I try to keep my head busy. I could go on and on about what not to say or do to someone that is grieving...A good friend came out and asked what someone grieving needs. I would say be there for them, to talk or just a shoulder to cry on. Stay in touch (email, text, call or visit) even if they don't answer or cancel plans with you. This is nothing against you, it takes a lot to have a conversation or to get out in public. Remember, Remember Deaken. Ask about the loved one...Ask me about Deaken. I love to talk about him and would love to share normal baby things with anyone about him...Like how he hated his diaper changed or anyone messing with his feet. He loved when I kissed his neck and when Jeff and I would smother his chubby cheeks. He was at ease when I would tickle his face with the silk of his blanket. I miss my time with him so very much. We may not have a baby at home but Jeff and I are a mommy and daddy please don't forget.

This video was one I didn't know existed or forgot about until a few weeks ago. It melts my heart, feeding Deaken was precious time with him. He would get too sleepy when I held him so I would have to feed him in his bed.

Night Owl.....

I am feeling like a night owl tonight, The pain I am feeling is overwhelming right now. I can't sleep, I feel sick to my stomach and don't even want to be right now. At this moment I am at the point where looking at the positives in life are just nonexistent. Deaken would have been six months old today and this is hitting me hard. I long for what could of been, what should of been. I also think about if Deaken was here we would be preparing for a plan for his second surgery that he would have in the next couple months. Wow how time does fly, I feel like it was not too long ago he was here and had his first. I can't even imagine what he would be like at this age and what it would be like to hand him over again to the surgeons. I see people having a hard time bringing their baby in for shots and mothers can't handle that. Imagine handing your baby over for open heart surgery, they just don't compare. I hate that any parent has to hand their children's lives over to the hands of the surgeon to keep their baby alive they have no other option, it just breaks my heart. A dear heart mom Natalie, her son Aidden was due for his second surgery this past Monday the 13Th. Unfortunately he had a bump in the road and surgery was postponed. Please keep Aidden and his family in your prayers.

The week of the 12Th and the 17Th are never easy, It is a struggle to get through my week. I find what gets me through is the simple "Thinking of you/Deaken" or "praying for you" whatever it may be that keeps me going... This Sunday the 12Th I was feeling a little low when it was the first time I didn't get anything. I know this past weekend was about Deaken and I did receive lots of support. I knew that with time things would be different. Maybe it was just harder because the past 4 months I had all that support on the 12Th and then for there just to be nothing... I don't want anyone to feel bad about this so please don't. I am just dealing with a lot of emotion over this and just putting it out there is helping take the loud off my chest. I do wonder when I will stop counting the months Deaken has been gone and when it will just be the years.... Same with his birth date the 17Th, will I continue to count in months??? I don't know. I realize I might expect too much from people, but please know this is what my life revolves around.

Happy 6 months to my sweet baby boy, Daddy and Mommy miss you very much and love you more than anything. We will be sending 26 red balloons up this evening for you and all your angel friends.

Staying Positive when everything is negative

First I have to say what a great weekend and tribute to the CHD warriors and angels. This weekend was the first annual walk in Alexandria for CHD. It's My Heart did an awesome job and it was so much more than I expected it to be. I had the best support team with me, Thanks ladies for making the trip! I also loved to see and meet the other CHD families.

This weekend also marked 5 months without Deaken. Instead of wasting the day away, which was all I really wanted to do. I decided to be somewhat productive. We went for a family walk that morning, ran some errands, had me time with a magazine and I finished my story for Matters of the Heart Vol. 2. As I was writing the end to Deaken's story I happened to look at the clock, it was a little before 9:30pm and it made me think what we were doing 5 months ago at that same time. I remember thinking this is the end, the end to everything...Our hopes, our dreams, our life...
When I think back of course I would feel that way in that moment and still sometimes do. It isn't the end of Deaken, it is true he's not here but it is just the beginning his story lives on, his memory lives on.

I try to live my life as positive as I can. No, I am not perfect and far from it, there are times when I can be the most negative person. Without going into detail, our family has been dealt a very unfortunate hand this year, with lots of struggle, disappointment and hurt. In the end I have faith all will work out and just try to be a good person through all this and stay positive. Nobody is guaranteed another day. Would you want to be remembered on your last day as negative, hurtful to others or depressed? When I'm gone I want people to think of me as a person who always saw the good in a bad situation. Going through unfortunate situations help us to learn from mistakes, grow a little stronger and make you who you are.

You never know the struggles that another person is going through, some just don't care to. I am fortunate to have a neighbor that came over today and she knew something was going on and asked if I had a baby. She said she saw flowers being delivered and the other day in the window she saw a crib mobile, but hasn't seen a baby. I explained what had happened and she shared with me this Oct. marked 4 years since her little boy passed away. It is so nice to talk with other mom's that get it that unfortunately lost their baby also. It reassures all the pain, hurt, and anger I feel is legit. I have a great support group but it is just different talking to those who have lost a child.

Life is what you make it. What would it be without the ups and downs? I will get through this, all I ask is for time, understanding and keeping Deaken's memory alive.

Not Alone

It has been a tough morning.... After Jeff left for work, I went back in bed to sleep a little bit longer. All I could think about was that dreadful night walking into Deaken's hospital room, His lifeless body, two nurses performing CPR and the doctors all around Jeff and I. This is a vision I often play over and over in my head, I wish things could of been so different. I often think about all the nurses that took care of Deaken, he was so loved. We could tell his nurses had a special bond with our little Deaken. His night nurse called him her "little boyfriend" and we knew he was well taken care of at night when we weren't there. That night when we chose to stop the CPR, the two nurses performing were in tears. I am so grateful for the angels who took care of Deaken and hope that someday when we are ready we can go back there and let them know how much we appreciate them.

I know God was with me this morning as I cried and know he continues to carry me....A good friend shared Deaken's story and about CHD to co-workers, each month they choose a charity to raise money for and the co-workers voted to raise money for CHD! She said nobody ever heard anything about Congenital Heart Defects....How is it that every 13 minutes a baby is born with a CHD, yet most have never heard about it???? I think it is safe to assume these people have children or plan on it. Deaken sure has made an impact on so many people in his short 26 days, I am so proud to be his mommy. Thank you Mil for sharing Deaken's story and for helping raise awareness=)

Strong outside, Weak inside

"Being strong is knowing when it's ok to be weak."

I love this saying, I hear all the time how strong I am, How strong Jeff and I are. I don't feel strong at all, but do know to get through what we have been dealt this year has made me strong if not stronger. I still believe that I will not be dealt with more then I can handle. My dad was in a bad motorcycle accident about 4 weeks ago, He broke his back, neck and split his head open. We figure he was laying at the scene of the accident about 2 hours before help arrived. His doctor said he is very lucky to be alive and not paralyzed. It is a miricle he didn't die that night. I believe Deaken and God were there that night with my dad, they knew our family couldn't handle another loss. Since Deaken passed I have a stronger relationship with God, He is carrying me through all of this, He is the one in control.

I get it that Deaken couldn't be the little boy we all wanted, I do! That doesn't make it any easier for me and I do keep myself together thinking that. There are times though when I need to cry, I hold it in so much just not to make things awkward. I feel I can only let my emotions out when I am alone, even away from Maize our dog.

This weekend I had a nice weekend. I was dreading it because Jeff would be gone and I have only been alone once at night since Deaken passed. I did just fine! With the help of two good friends that kept me company on Saturday and planned a low key night. It was so nice because I really felt like they wanted to know what was going on in my life now and just showed that they care so much for Jeff and I. I feel like the night was all about me! which sometimes a person needs. It is healing for me to talk about Deaken and talk about the other heart babies I know. Thank you so much Amanda and Nellie for Saturday, I knew if I needed a cry you both would have been right there with me=)

Everyday...WAIT!....Every minute in a day is a different emotion I feel about losing Deaken. Some I am at peace, but others my heart is acheing. I can imagine it will always be like that. I know that I can be strong but also that it is ok for me to be weak.

Letter from Mommy.....

Dear Deaken,

Today would be a day to celebrate if you were here with daddy and me. You would be 5 months old! I wish instead of blogging about how much my heart aches for you, That I was giving family and friends an update about all the things you might be doing. Like how much you enjoy going for a walk on a sunny day or how you love tubby time.

Before you were born daddy would often ask me at any given moment "What would we be doing with the baby right now"? I would look at him, smile and tell him about the little things babies do and some of the things you may enjoy. It hurts so bad thinking I will never know what you would of enjoyed. Daddy and I were so excited to have you home and be a family. It breaks my heart we will never get to do the things we had planned and that I will never get to hold you while here on earth.

I am not mad at you for leaving, I knew your little heart just couldn't take it anymore. It killed me to have to see you like that and there was nothing I could do to protect you. I want you with me more then anything, but feel it would have been selfish of me to keep you here for myself. God has plans for you with him, and a plan for me here. While I am here I am keeping your memory alive. I am very excited about your name being on the Hope 4 Tiny Hearts car, which races this Friday! And looking forward to finishing your story to share with others in a book that will be out next summer. It is all to help raise awareness for CHD. Mommy wants to do what I can to help others so they can have their heart babies longer and take them home to show them how life really is intended.

Deaken you are so special, so many people are still thinking about you everyday. You are leaving your little (or should I say BIG!) footprints on people's hearts. I love you so very much and carry you in my heart, Always and forever.

Love, Mommy

Whole Hearts

I want to share this picture with all of you, I know it is a horrible one of me but I just gave birth a few hours ago! This picture was the first time I really got to meet Deaken and touch him. It is a very special picture to me.

I wish that I had something uplifting to blog about, but all I have right now is so much anger, hurt and confusion.

I am angry with the way things have turned out, angry we have all these bills to pay for and yet no baby here with us. Hurt that other parents are going through the loss of their child, and for confusion where do I start??? I am so confused why this had to happen. I get it that Deaken's heart just couldn't take it anymore, I get it that he had a long road ahead of him, I get it that his quality of life was questionable and I get it that he is in heaven with a whole heart and in zero pain, these things "I get" but it doesn't make any of this easier for me or for Jeff.

In general I am just confused about my life... Why I am still here and how do I continue to breathe and make it through each day. How does God expect those that lose their babies to continue to breathe??? Some days I have large black clouds over me and I just want to give up. I am feeling so lost without the missing piece of my heart Deaken took with him. When I am called home to heaven will my heart be whole again? sometimes the pain is so strong I feel I can't breathe.

It is so strange to have all these dark moments and then at times I have no emotion, no feeling, no interest in anything at all. My whole body is just numb. Maybe this is just something your body goes through when it just can't handle it anymore. I have all this pain and just don't know how to deal with it and really I don't want to deal with it.

I am looking forward to having a 4 day weekend and just having time to sort through my emotions. Time is all I need, it won't cure me or make it all better, but with time I am hoping to find some peace or some comfort knowing I will see Deaken again some day and I will also have my whole heart.

Remembering....

Every month I dread the week of the 12Th and the 17Th, it seems to get harder with time. It is just not right I should have my 4 month old baby boy. I am so thankful I have so much support from my friends and family, without them this journey would be a lot harder. As time goes on I love to randomly hear that others still think of Deaken often and remember how special he is.

This past weekend I started writing Deaken's story for a book that will be out next year to help raise awareness for CHD. Although I play my days with Deaken over and over in my head I am finding it hard to type it out. Thinking about when I was pregnant seems to really bother me...I miss it so much. I miss my belly, I miss feeling him kick, I even miss my swollen ankles and would give anything for the back pain of being pregnant. Deaken was safe in my tummy and I could protect him, it was so hard to see him go through what he did in his short life.

Along with all this going on in my head I have to be able to function at work, which wasn't easy this week. We had CPR renewal class on Tuesday which went fine until we got to the baby part and needed to practice. All I could see in my head was the night we got the call and running into Deaken's room and the nurses doing CPR on him. A horrible image no parent wants to see done on their baby. The CPR instructor said they continue to do CPR on a patient until the family gets there, more for "show." I wish they stopped they new he was already gone and there wasn't anymore to be done.

My favorite thing people say to me is "I don't know how you do it" or "How do you do it, I couldn't do it." I really take some offense to it, I'm not ok with going on without Deaken, One day just turns into another and I continue to breath, that's all I can do. Most days I feel like I am going through the motions of life.

Continue to go on...

The holiday weekend was yet another reminder that someone is missing, not that everyday isn't a reminder but is much more apparent at family gatherings. The morning of the fourth I had some anxiety about the get together but knew time with family you can't get back. People want to see us and I need to remember life does go on.... as hard as it is to admit it, I have to go on... We have to go on. It was nice to get out, even though I felt like I had a black cloud over me I did find myself having fun, smiling and feeling somewhat at peace.

This week I have had work off. Jeff and I have kept busy with looking at reception sites and looking into getting a different vehicle. It has been so nice to spend quality time with my "husband" and do normal things again. I am so blessed to have Jeff on this journey with me.

I have been thinking how short Deaken's life was and how short our lives are. I know that someday I will be with Deaken again, some days I wish it was sooner than later. While here on earth and being what I have been through, I believe everyday is a blessing and to not take it for granted. I know someday it will be easier to do everyday tasks and I will find a way to cope. There are good days and bad days and I can imagine it may be like this forever. I want nothing more than to hold Deaken again, but until then I am grateful for the people and things I do have in my life.

one day at a time...

Tonight my mind is everywhere... I woke up this morning thinking of Angie and Ryan (Hazel's mom and dad), Today Hazel should be 6 months old. I ask myself daily, How does God expect those that lose their babies to continue with every day life? We have constant reminders that our babies are not here with us. Birth and angel dates of each month, seeing other mothers with their baby, and my favorite the weight I struggle to lose.

Yesterday I knew I was due for a breakdown. As Jeff and I were driving home we saw a young mother pushing a stroller with a baby boy, the stroller was like ours. It is crazy how something as simple as a stroller can make you feel so much pain and anger. Deaken should be here....he should be in his stroller and go for walks with Maize and I.

There has to be some meaning for all this to happen. I am not sure what it means and who knows if I ever will. I was chosen to be Deaken's mommy and to be his voice for CHD. I am doing my best to be a advocate for CHD and I know if this never happened to me I would have nothing to do with this and think that wouldn't happen to me or anyone I love. I wish this didn't have to happen to me to open my eyes. It hurts to know that I am not alone, there are so many parents dealing with the loss of their children and not just from CHD.

I feel like I can't move forward in life. I continue to live in the 26 days that Deaken was with us, replaying his 26 days over and over. I am still just making it one day at a time.....

Our Warrior Deaken at OneTrueMedia.com

I made this in memory of Deaken and for CHD awareness. Grab a tissue before watching.

Make photo slide shows at www.OneTrueMedia.com

Getting a grip

It has been a hard week and I am still trying to get a hold of my emotions. I am not liking the person I am right now and trying my best to find the new me.

This weekend was hard on Father's day. Even though Jeff tries to stay strong for me and tends to hold his feelings in, I could tell he was hurting. He had so many hopes and dreams for his son and to see them just vanish the way they did is just not right.

I have decided to cut back a day at work for awhile. It has been hard to go to work and act normal all day and then the drive home is when I fall apart and have to go back to reality. I had a patient today ask about Deaken, she didn't know he was gone so I told her and after we talked it felt good to talk about him and to say yes I had a baby, I had him for 26 days.

This weekend I also feel I made some progress in my grief. I decided to clean out the freezer...I have been hanging on to all of Deaken's milk and came to terms that I didn't need to keep it around anymore as a constant reminder. When talking to my friend Angie (Hazel's mommy) she said something that made sense to me and helped me to look at "The Room" differently. She said they never got to bring Hazel home so the room that was intended for her is just the baby room..... Same with Deaken we never got to bring him home so it really isn't his room. I have kept all Deaken's things separate anything he used is his and all the rest is for the baby to be, I have begun storing some things for now in hopes that someday I will get another chance at being the mommy I had imagined on being to Deaken

On a another note I am looking forward to this Saturday. We are doing Heartbeat 5000 walk/run in memory of Deaken and I am so thankful for those that are joining Jeff and I, not only for the support but also for a great cause to raise awareness and money for CHD.

Two months gone by....

Yesterday marked 2 months without Deaken. I slept in until noon, which Jeff made me feel guilty about but I decided I am not going to feel guilty. 1) I needed the sleep and 2)I wanted to just get the day over with. The 17th and the 12th of each month will never be the same to me. The 17th will always be a reminder that Deaken should be this old and the 12th marks how long he has been gone. 2 months??? It just doesn't feel right. I feel like it has been an eternity since he left us and other days it seems just like yesterday I was smothering him with kisses.

Some things I need to get out and feel I have been struggling with is accepting my new way of "getting by" in other words my life. I say "getting by" because that is exactly how I feel, I am doing what needs to get done and then I am spent. My emotions are up and down and change within a matter of minutes. Some days I feel as though I am just going through the motions.

During this grieving process I am finding out more and more who is really there for me. I know it is hard to know what to say to me and when the phone rings I most likely won't or I just can't answer. It is hard to explain and don't expect anyone to understand unless you have gone through a loss like this. Please don't give up on me or on us..... just knowing you think about Jeff, Deaken and me is all I want to know. When we do talk don't be afraid to mention Deaken's name, because that is what I long to hear.

I have been put in a few situations since Deaken passed that I am not sure how to deal with and that I am not ready to deal with. As a grieving mother who's baby has just passed away 2 months ago I don't feel comfortable around other babies right now or talking about them, especially little boys. This doesn't mean I don't care and I know that I can't avoid all babies forever, but please know this is a hard situation for me to be in. I find myself unable to be in public without seeing a little boy and my heart aches and my arms feel so empty without my little Deaken here in them. As a mother I would hope you can respect that.


I met with another heart mom who lost her little Hazel in January to HLHS. Although we all have different ways of grieving I have found her and I have a lot of the same emotions in our grieving process. It was so nice to sit down with someone who is also grieving and be able to mention Deaken's name without feeling like I made it a uncomfortable conversation. It is so nice to know my feelings are what others are feeling and that I am not being unrealistic. I look forward to talking more with her as we travel this unknown path of grief.

I end this blog tonight with a reminder to those reading.... This is a grieving mothers blog, unfortunately I am that grieving mother... Nothing I write is directed toward anyone. It is just to help those understand what I am going through and it does help me to write this out. Thank you for understanding.

Little blessings....

My last two blogs have been painful to write and I know hard for family and friends to read. I don't want every post to be sad or hard to read, but I have been having a hard week....for many reasons.

Today has been another one of those days. Maybe it was the rainy weather that brought me down, I don't know. I had plans to have a much needed girls night which physically I felt I couldn't do, so cancelled. I know my friends were excited to hang out and get me out, I wish I could. But maybe tonight I just needed my alone time just me (well Maize too!). I haven't had just me time to really grieve and I did a good job of it tonight. I went through the wonderful messages people wrote on the caring bridge, smelled Deaken's clothes that he wore (his smell is fading), went through all the wonderful gifts he got at my showers, Imagined him wearing each lil outfit and messed around with his stroller (If you didn't know Jeff and I were so proud and excited of our stroller purchase) then I allowed myself to let it out in the middle of his room holding what is left of him.

I titled this blog as "little blessings" because as I think back there were so many little blessings with Deaken. From the very beginning... I found out I was pregnant very early (4 weeks) and took care of myself. We feel fortunate to know about Deaken's heart before he was born. Some would disagree, but I didn't change anything if anything it made my pregnancy even more special (not to mention more foot rubs!) we also had time to prepare for what could happen and what our future would hold. Because of his heart I got to see him every week on the ultrasound and got to share the experience with family. My pregnancy went well and delivery was awesome! It took 30 hours and I pushed 3 hours straight! but it just seemed so easy. My recovery was great too, I was discharged not even 24 hours after giving birth! When I think back on all this I think it was all in God's plan....he made it easy on me so I could be there for Deaken, he knew I wouldn't have much time as I would of liked with him.

As for after Deaken was born he was the blessing and many little blessing came with him.... Although his heart was worse then they expected he had a lot working in his favor. He was bigger then expected, feisty!, drinking his bottles, breathing on his own and looked healthy (not blue like they said). It was a blessing they waited to do surgery until he was 19 days old. We got 2 1/2 weeks to treat him somewhat like a "normal" baby. We got to hold, feed him, change diapers, bathe and get to know him. After surgery it was rough. He wasn't doing as well as we all expected. On his last day though he gave us a good day, I will never forget it. We watched the TWINS opener together as a family and he was alert and looking at Jeff and I all day.

It is hard to say this.... It was a blessing God took Deaken when he did. We had him for just enough time to make memories and to keep them in our hearts. I say this because we all know he had a long uncertain road ahead. Yes, I would of done whatever to keep him here with us, but would that be fair to him? I know it is for the best, it doesn't make it easier... but I can find some peace knowing he isn't feeling any pain now. God was answering my prayers when I asked to take Deaken's pain away and give it to me.... Not the way I wanted but God works in mysteries ways.

With all the sorrow I have I still believe and have faith that everything happens for a reason. Deaken's short visit on earth has meaning, it is my goal to do what I can to keep his memory alive and raise awareness for CHD. I know there isn't a cure but if we can work on getting the funds for research maybe in the future heart parents will get the chance to bring their baby home and do the things they imagined doing with their little one.

I end this blog feeling a little bit more at peace tonight. I am not sure what tomorrow will bring, but who does?

"there's no night in Heaven, so we all arrive on the same day." I'll see you later today, my sweet baby boy. I'll see you later today." -unknown

Everyday is a struggle to feel somewhat "normal". I don't want to be selfish in my grief, but I am feeling so sad for myself. I am having a hard time with why did this happen to me? not that I would ever wish for one to lose their baby. I thought I did everyhting right during my pregnancy and what did Deaken do to deserve this? He had so much life to live. He didn't know that what he had to go through wasn't the way life was intended. It is hard for Jeff and I to think he never saw the sunlight, had a breath of fresh air and most of all never got to come home. As I was driving home today I thought to myself that bringing your baby home has to be the next best thing next to meeting your baby. I may never know......

I feel like I am on a rollercoaster of emotions. I am so frusterated, frusterated with those that think things will be ok or with time things will be "normal" again. I am Deaken's mom, I carried him for 39 weeks and my life will never be "normal" again. I am missing a piece of my life that cannot be replaced.

Along with feeling frusterated, I am feeling like a failure. I feel like I failed at being a mom, I couldn't save or protect Deaken. I feel I am failing at my friendships, I just don't have the strength to have a normal conversation with people because as of right now my life revolves around my saddness for Deaken. And with my family, I find myself being so angry with them for no reason.

I am feeling so alone.....I know I have a great support system, but unless you have lost your baby I don't think you really know how it feels, and would never want you to expierence this pain. I feel alone in a way that most people my age are going out having fun or are starting families of their own, which I am so happy for them but also find it hard because I want what they have. I would love to go out and not feel guilty for forgetting reality for a couple hours or to go home to my baby and just hold him.

I regret so many things of my time with Deaken. I wish I had taken more videos and pictures, stayed at his bedside longer and had skin on skin time. You just don't think it could happen to you and I regret being so blind to the fact that he may not come home and do the things we planned.

This blog wasn't intended to offend anyone and I hope nobody feels that way.

Why?

If you are reading this chances are you are a family member or friend who knows or heard about our story. I decided to start a blog to get my feelings out and just to let people know how Jeff and I are coping. I am not good at talking about how I feel but seem to do just fine writing it out.

Deaken has been gone 1 month, 2 weeks and 3 days. Everyone tells me "It will get easier" but to be honest it seems to be getting harder. At night sleep doesn't seem to come easy, even though I am so tired. Deaken is on my mind all day, I play everything over in my head like it was all a movie I saw or a book I read.

Shortly after Deaken was gone I really didn't have questions I just felt like this is what god had planned and I have to deal with it and there is a reason for all this pain. Now to be honest I have so much anger, questions and can't think of any reason god would give Deaken a bad heart and take him away. I question the Lord, I question his reasons, why he would give children to parents whom disown them, who beat them, who curse at them, who smoke and or do drugs during their pregnancy and we, who wanted Deaken more then anything, have a loving family waiting for him and family who give generously on all levels to all in need, so why are we the ones in this situation???? Just doesn't make any sense....

Now that the benefit is over things have really slowed down for Jeff and I. We have to get back to reality and maybe that is why I am having a harder time this past week. I fear that people will forget about our little Deaks and just assume we should be alright now. For me I will never be the same. Deaken took a piece of me with him and I am forever changed. Before bed I can't help but cry for Deaken and cry for Jeff and I, but when I am done I don't feel any better I just feel empty...like the day Deaken was removed from me.



"An Angel in the book of life wrote down my baby's birth. And
whispered as she closed the book "too beautiful for earth."
~Author Unknown