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=)