Rocket Blast-Off

by Heather on April 23, 2009

in the famous Madeline

Today was a day I had long looked forward to. The medical supply company came, and took away Maddie’s oxygen tank (aka the Oxygen Rocket).
Maddie's oxygen tank

But it wasn’t joyful. I couldn’t be home when the man came to pick it up. I couldn’t even call to SCHEDULE the pick up, Mike had to do it. My wonderful mom sat in our apartment while Mike, Rigby, and I went for a short walk. When we came back, the rocket was gone. She said the pick-up guy was devastated. Join the club.

Madeline COULD. NOT. STAND. wearing a cannula. I couldn’t blame her. The prongs were long and went far up her nose. Who wants that? Plus the tape that held the tubing in place irritated her delicate skin.

Considering how much Maddie and I hated the rocket, it sure was hard to let it go.

Because Maddie had become an active tumbling toddler in her sleep, we’d moved the rocket from her room to next to my side of our bed. That way, I could sleep slightly easier knowing that I was right there should she get tangled in the oxygen cannula that tethered her to the rocket. Of course, being super-paranoid, I was usually awake all night when she was on oxygen. Maddie would sleep in between Mike and me, and her cannula would lay across my body.

Now there is an empty spot in our bed AND an empty spot in our room. To say nothing about the empty spots in my arms, my life, and my heart.

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{ 182 comments… read them below or add one }

1 JT April 23, 2009 at 12:20 am

I think about your Maddie daily. I am so sorry for your loss.

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2 Jaclyn April 23, 2009 at 12:33 am

I find myself coming back to your blog, day after day sometimes more than once in a day. Having followed for some time I know we would totally have been friends. So, even though we dont know eachother, I think of you daily and of Maddie too. I know it had to be hard to get rid of the tank. I am a nurse, just took a patient up to the floor on oxygen and all I could think of on the walk was you and Maddie. Hang in there. You are in my thoughts and prayers.

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3 Kim April 23, 2009 at 12:34 am

my heart is breaking for you. Maddie’s beauty will shine everyday thru photographs, the sun and baby grapes. my thoughts are with you and your family.

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4 Kelly April 23, 2009 at 12:39 am

Heather, what you and Mike are enduring right now – every moment of every day – is the worst nightmare of any parent. I’ve been reading your blog & checking for updates a bit obsessively, I must admit, ever since I heard the sad news about Maddie. I just want you to know that I admire you for your courage and honesty in these darkest hours of your life. Your love for Maddie is infinite and beautiful and undying. May you find peace and healing in this process of sharing your life with others. Thank you from the bottom of my heart!

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5 Cinthia April 23, 2009 at 12:49 am

I am so sad. This hurts a lot for all of us internet people, but more so for you all. I am sorry, forever, infinity.

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6 Shaunta April 23, 2009 at 12:50 am

I am so sorry for your loss. My heart breaks as I read about your sweet daughter. May God bless you and your family.

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7 Noelle April 23, 2009 at 1:27 am

My heart aches for you, Heather. I’m so, so sorry for your loss.

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8 Rose April 23, 2009 at 1:47 am

I also keep coming back to your blog. I am so sorry for your loss and you are often in my thoughts and prayers…

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9 Jen April 23, 2009 at 3:13 am

I know that “I’m sorry” and “my heart aches for you” and “I shed tears daily for you” don’t really help that much but every one of them is true. I love you to the moon and back.

Jen’s last blog post..Randome Tuesday Thoughts

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10 Melissa April 23, 2009 at 3:58 am

I dont’ know you and you don’t know me, but I have been reading your blog for a short time (both the history and current postings). My heart just aches for you and your family and your beautiful, beautiful little girl. I also had preemies (my son was born 12 weeks early) so I understand the fear, excitement, confusion, frustration and all the rest that goes along with bedrest before the baby as well as having a preemie in the NICU. Though I started reading your blog after Maddie passed away, I celebrated with you in you blog when she came home from the hospital. I wish there was something I could do or say that would take away your pain. I can’t even imagine how deep the hurt goes. Please know you and your family are in my prayers.

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11 amanda April 23, 2009 at 4:14 am

I can totally understand why it was hard to let go of the tank, no matter how much you hated having it in your home in the first place. It symbolized Maddie – so it’s completely understandable why you wouldn’t want to let it go. Your mom is great for being there so you guys wouldn’t have to. xo from CT

amanda’s last blog post..the smell of the greasepaint, the roar of the crowd

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12 MB April 23, 2009 at 4:19 am

You are so incredibly brave to chronicle the days that follow your loss. Thank you for sharing…

MB’s last blog post..10 Years Later

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13 Anna Marie Hinnant April 23, 2009 at 4:31 am

I’m keeping you in my thoughts Heather, and Maddie will be forever in my heart.

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14 Amy April 23, 2009 at 4:36 am

I can only imagine how you treasure each and every one of Maddie’s precious things, and how losing any one of them would be extremely difficult, to say the least. I’m so so sorry for your loss. I think of Maddie, you and Mike so often. I’ve shared your story with so many others…as a matter of fact I was telling another mom about your sweet Maddie which led to both of crying poolside. Just know that people are still thinking and talking about your sweet, adorable little girl all across the country…and we always will. I will never forget her. My heart aches for all of you.

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15 Karen April 23, 2009 at 4:38 am

The most cruel part of losing someone you love – but especially a child – is having to figure out what to do with what’s left behind and try to cope with harsh and bitter reminders of your loss especially when and where you least expect it. I wish there were some way we could all insulate you from experiencing any of it. I wish there were something I could say or do to make those empty places feel full for you again. This pain and struggle is one that no parents should endure. May peace be with you soon my friend.

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16 Christine April 23, 2009 at 4:43 am

It is infinitely unfair. You and Mike and your family are so so brave.

Christine’s last blog post..The daytime of the night…

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17 Christina April 23, 2009 at 4:49 am

Your devasting loss happened just after my infant son gave us a scare and had to go for immediate brain surgery at sick kids hospital here in canada. Scariest days of my life, but they ended so well with everything fine. I cannot imagine how you feel. All my worst fears of those days collided with your post about the passing of your daughter. She was beautiful and in a fair world, you would still be holding her in your arms. Words cannot take your pain away, but I believe you were truly blessed to have her for even her short amount of time here on earth. My deepest condolences.

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18 Tami April 23, 2009 at 4:50 am

This so not fair!! It breaks my heart. I miss her and I didnt even know you guys.
I am soooo Sad for your loss. Im praying and thinking for you guys.
Hugs,

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19 sarahct April 23, 2009 at 5:01 am

I am so sorry you are having to deal with this. My heart just aches for you. HUGS!!!! I am still praying for your family

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20 Christy Burgess April 23, 2009 at 5:14 am

Heather and Mike, what are enduring right now – every moment of every day – is the worst nightmare any parent can ever have. There is something unnatural about burying a child. I know, I did it almost 3 years ago and it breaks my heart that you are having to do this now. My prayer for you is that with time, your memories of joyful times overtake this saddness that you now feel and that your pain will dull. There are really no words to be found to say to you. What does one say? How can you describe the vast span of emotions & thoughts filling us, strangers, in contrast to what each day brings you, her parents, since Maddie died? In days to come, some days the strength will be there & the smiles and laughs will be genuine. Other days, you will blindsided with paralyzing grief & a heaviness that reduces you to nothing but tears & longing for what you cannot get back this side of Heaven. And the days in between fill with a mixture of everything between. Through it all, one thing will be a constant steady: the real absence of that sweet little blue eyed girl & the ever-presence of God’s love & comfort. It is OK to be hurting, but one day at a time, you will make it through. May your Maddie’s touch on the world never be forgotten as she continues to make an impact of people, complete strangers, and on those little babies who will forever be helped from Maddie and her March of Dimes impact.

Christy Burgess’s last blog post..Supporting Duke

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21 Jenni April 23, 2009 at 5:31 am

Just know that I think of you and pray for you daily. I am so glad you are blogging, because it eases my mind that you are up and moving.

Jenni’s last blog post..12 tasty, fast recipes that kids will love

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22 Dana April 23, 2009 at 5:32 am

Boy this is so incredibly heartbreaking..I know this is a wasted emotion but I’m angry for you….angry and sad that you are having to go thru this…Nothing we say is going to lessen the pain you both are feeling…Just know that we are here supporting you and missing Maddie too… I even had a dream about her last night…She was happy and smiling! I woke up with a smile on my face because of Maddie…She will ALWAYS have a positive “touch” on everyone…Hugs..
Dana

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23 Bec April 23, 2009 at 5:39 am

I don’t know what to say expect that I’m here. All my love.

Bec’s last blog post..Wordless Wednesday…on Thursday

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24 Lesha April 23, 2009 at 5:41 am

It is so unfair. Not just that you lost such a sweet little girl, but that now you have to face these small things that just keep reminding you. I think about your family every day and I hope you are able to find comfort, at some points, some days. To wish I could take away the pain of someone I’ve never met…All I can think is it just sucks. And you are so strong. You keep speaking and sharing and I don’t know how you do it, but I admire you so much for doing it.

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25 MBKimmy April 23, 2009 at 5:43 am

I am so sorry … I know I keep saying that but really I have NO OTHER words, I feel like I can’t look away and I don’t kow why. I check for a new post several times a day … I feel like if there is a new post that I will be able to readjust my prayers and thoughts. I feel like if there is a new post that you are making it … another minute, another hour and then another day. I cna’t imagine what you are feeling and I just want my prayers and thoughts to take away some of that.

I will continue praying and worrying hugs and prayers to you and mike!

MBKimmy’s last blog post..No words

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26 Jamie April 23, 2009 at 5:45 am

Still here, holding your little family in my thoughts and prayers.

Jamie’s last blog post..Lazy Day Skirt-Polka Dot Edition

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27 Stephanie April 23, 2009 at 5:56 am

Every day I read your blog and my heart aches for you. I want to reach out to you and your family to offer you comfort, support, strength… and most days I am at a loss for words. My family loves you and is praying for you. God will bring you through this and while there will always be a hole in your life I am praying that it won’t be as painful.

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28 Lisa April 23, 2009 at 5:57 am

No matter how much you hated that thing it was part of Maddie’s life so it is totally understandable that you had a hard time letting it go. Hold onto the good parts of her life, her smile, her laughter, her toys, her joy for life. I can’t begin to imagine how you feel, but I think about you every day and wish I could in some way take away a little bit of the pain.

Hang in there.

Lisa’s last blog post..Weaning from Before Nap Nursing Session: Day Three

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29 Mer April 23, 2009 at 6:01 am

I think about Maddie all the time too. I have a purple shirt on today and as I ironed it for work, I thought of her. I am just so incredibly sorry that are going through this, and that your precious baby girl is gone.

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30 Amy April 23, 2009 at 6:01 am

Still keeping you in my thoughts (((hugs)))

Amy’s last blog post..I Heart Faces {Self Portrait}

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31 Emily Patterson April 23, 2009 at 6:05 am

Like everyone else, there are no words and no pretending I know what you both are going through. Try to lean on each other as much as you can and learn how to live again together. Please remember a quote, “A heart can be broken, but it will keep on beating just the same.” When life begins to creep forward, try not to feel guilty. Maddie would want her parents to try and live once again. And please keep on taking those beautilful pictures. Photography can sometimes lead to mending wounds.
Peace,
Emily

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32 annie April 23, 2009 at 6:06 am

Letting go is part of the healing process but it’s not the pretty part. Perhaps you don’t want to heal right now and that’s okay too. You just have to feel what you feel until you don’t feel something else. I’m so glad to see you writing and reaching out, that will help immensely and one day you will smile. In the meantime, I’m thinking of you often and holding your family in my heart. After seeing so many pictures of Maddie, I dreamed of her last night and she was happy and healthy and smiling. I’m hugging my children tighter these days, taking more pictures and praying for you.

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33 Danes April 23, 2009 at 6:12 am

((((HUG))))

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34 Marie April 23, 2009 at 6:13 am

Heather,
I stumbled across your blog when another blogger I read requested prayers for Maddie. Since then, I have been riveted to your posts, and have been reading your story. I am so saddened by your loss. It’s odd to say my heart breaks for you since I don’t even know you – but after reading so many of your posts, I feel like I do. My son was born 15 weeks early last March, so I know how raising a preemie is, with all of the developmental testing and checkups and visits with every kind of doctor imaginable. What I can’t begin to imagine is how it must feel to have made it through many tough times and now to be dealing with Maddie’s loss. When we hit the 1 year mark, I breathed a little sigh of relief at having made it through his first year – but your experience reminds me daily not to take anything for granted. Thank you for giving me that. I know you must be so proud of Maddie and the joy she brought to so many people, near and far, known and unknown. My husband and I are walking in our local March of Dimes walk on Sunday, and will have you and Mike and Maddie in our hearts.

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35 suze April 23, 2009 at 6:29 am

You, Mike and Maddie are in my thoughts every day.

suze’s last blog post..hope there’s someone to take care of me when i’m old…

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36 Shauna April 23, 2009 at 6:29 am

I can’t imagine how hard it all must me. I’m praying my guts out for you guys.

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37 Jodee April 23, 2009 at 6:30 am

Sending love and prayers your way today….

Jodee’s last blog post..Hugh Jackman, Twitter and Maddie Spohr

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38 Susan April 23, 2009 at 6:31 am

I’ve read you for quite some time and in an effort to, I don’t know, stay close somehow, I’ve been reading your archives. You and Mike are amazing parents and it’s so obvious how much you loved Maddie Moo and totally devoted yourselves to her. This is so unfair and painful and I hate that you’re going through it. I think of you often and think of Maddie EVERY time I see purple. Hugs.

Susan’s last blog post..Don’t Mess With Me

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39 catherine lucas April 23, 2009 at 6:37 am

Curling up in bed for some cave time is good. It’s not easy to walk around with a hole in your heart. Curl up and cry, cry for Maddie.
It’s utterly frustrating to not have words to really comfort you and your family… How could there be?

catherine lucas’s last blog post..

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40 Tela April 23, 2009 at 6:40 am

Like the others, I’m checking your blog and your twitter account daily, almost obsessively, hoping that by reading your words, I can soak up some of your pain.

I think of Maddie, you, and Mike daily. You have made a giant impression on me, and I keep hoping there’s something I can do to honor Maddie.

I’m walking this Saturday in the MoD walk, and this might just be the kick in the pants I need to pursue the nursing degree I’ve dreamed about since I had my own child.

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41 AMomTwoBoys April 23, 2009 at 6:49 am

I wish I could do something, anything, to make this even one teeny, tiny bit easier for you. Know I love you and that I will be here for you until the end of time.

You’re stuck with me.

xoxo

AMomTwoBoys’s last blog post..People…People Who Need People

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42 Heidi April 23, 2009 at 6:54 am

My heart breaks for you over and over again. Maddie has touched so many.

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43 J April 23, 2009 at 7:02 am

I don’t know you Heather, but I feel like I do. I pray everyday for your family. Love for a stranger in Missouri.

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44 Andrea April 23, 2009 at 7:04 am

I think of your family often, and of that beautiful smile with the three teeth on the bottom…

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45 J April 23, 2009 at 7:05 am

Sorry- It should read love “from” a stranger in Missouri. I’m new at the blogging thing.

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46 Nichol April 23, 2009 at 7:08 am

Oh Heather and Mike I am so sorry. Your in my thoughts always

Nichol’s last blog post..Please Pray For Kayleigh Freeman

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47 Dawn April 23, 2009 at 7:08 am

We are not *totally* helpless http://www.marchforbabies.org/s_team_page.asp?SeId=535238&si=

just, y’know, mostly.

Dawn’s last blog post..Shaken

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48 cindy w April 23, 2009 at 7:10 am

I’m so glad you & Mike didn’t stay in the apartment when they came to take the oxygen rocket away. There was no need for you to watch it leave your home. I get the attachment to it, even though you hated it – it was there to help Maddie. Letting it go means taking one more tiny step toward acknowledging that she’s really gone.

Still sending lots of prayers and Internet hugs from our end of the world.

cindy w’s last blog post..overreaction

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49 threeundertwo April 23, 2009 at 7:11 am

(((Hugs))) I’m glad your mother was there to take care of that for you. That was a good idea.

Thinking of you every day.

threeundertwo’s last blog post..The Joy of Physical Therapy

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50 Jenny in IL April 23, 2009 at 7:12 am

I’m so sorry. I can’t imagine how hard that was for you. I think of Maddie daily.

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51 kris April 23, 2009 at 7:14 am

Perhaps the worst part of all is being left behind to take care of things. I am so sorry! {{{{{hugs}}}}}

kris’s last blog post..You capture – LETTERS

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52 Jennifer April 23, 2009 at 7:16 am

I’m sure it was so difficult to send that thing away–even though you all hated it, it was part of her life. I’m really glad your mom is there to help out–hope she’s doing okay too through all of this.

Also–good luck w/ the Hugh Jackman thing! I’m going to Twitter him some more today!

Jennifer’s last blog post..Vomit and Rabbits

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53 Laura April 23, 2009 at 7:17 am

Thinking you and your husband and little angel every day! I have been through this-it does get a little easier every day! Just hang in there!

Laura’s last blog post..Free piece of KFC new grilled Chicken on 4/27

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54 Jeni B. April 23, 2009 at 7:20 am

We don’t know each other but some how I ended up reading your blog. I just wanted to let you know I read every day and pray for you and family. God Bless.

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55 Suzanne April 23, 2009 at 7:22 am

I’m crying for you. I wish this was not happening — it is just the worst, crappiest, shittiest thing. Your account of dealing with the mundane details of life — without Maddie — is devastating. I am so, so sorry. I would have been so sad to see that damn rocket go too.

I’m thinking of Maddie all the time, and sending you guys my best wishes from DC.

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56 nic @MyBottle'sUp! April 23, 2009 at 7:24 am

me again… not that we “know” each other or anything. nevertheless, i’m back. commenting. looking for words that just aren’t there.

my brother’s best friend died when he was 16… 7 years ago… his family still has his room exactly the same way it was before he left this world.

there’s no “right way” to do this, put her things “away,” etc…

my thoughts are with you constantly.

nic @MyBottle’sUp!’s last blog post..to jackson: on your 1st birthday

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57 Tamara April 23, 2009 at 7:26 am

There’s so much that I wish I knew how to say to you. All I can really come up with is that I am so sorry and that your beautiful daughter’s memory will go on through the many of us out here in cyber world.

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58 Molly April 23, 2009 at 7:28 am

I’m so glad you and Mike are both still writing.

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59 HeatherPride April 23, 2009 at 7:32 am

Always, always thinking of you. This is so hard, harder than anything you’ll ever go through. I’m so sorry.

HeatherPride’s last blog post..Fat Girls Club, Week 7: Stress. It Does a Body Good

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60 Laura April 23, 2009 at 7:34 am

Cyber hugs to you both. As one who routinely gets kicked in the face overnight by my little one, I know how much I would desperately want that back too.

Laura’s last blog post..Car Seat Raffle

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61 WM April 23, 2009 at 7:34 am

I wish with all my heart there was more I could do. I donated to MOD in Maddie’s memory and please know that your beautiful little girl has touched my life immensely.

WM’s last blog post..Hacked,Jacked and feeling out of whack

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62 Loukia April 23, 2009 at 7:35 am

I’m so sorry, I can’t even imagine. Well, yes I can imagine and I’m so sorry. I don’t know what to say but I think about you often and your beautiful daughter. God bless you all; she is an angel, that is for sure. There is no other explanation…

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63 Jill April 23, 2009 at 7:40 am

I can’t imagine how hard these daily, heart wrenching reminders must be to endure. This morning I looked at my sons’ windowsill full of asthma treatments and tried to imagine having only the meds, without the children, and my heart broke for you all over again. I hope writing about your struggle and about Maddie is therapeutic and helps in some way.

Jill’s last blog post..The one where Jill learns to tell a short story shortly… wait that doesn’t sound right

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64 Veronica April 23, 2009 at 7:44 am

My heart is with you and your family at this time of loss and grief. What a beautiful and wonderful little girl. A true angel on Earth. I wish I could make it easier for you, so I will keep you in my prayers an thoughts. All of the best to you and your family and hope for the future.

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65 Nicole April 23, 2009 at 7:49 am

I wish there were words or SOMETHING that could help ease your pain. I am just so so sorry. My heart breaks reading your words. Your sweet Maddie has touched my life, and the lives of so many, in so many ways. We’re walking this weekend for MOD, we were regardless because of my preemie daughter, but I, as well as my daughter, will be wearing purple to honor your Maddie. I pray for you both and your on my mind daily.

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66 Sarah April 23, 2009 at 7:51 am

Our stories are so similar. My water broke at 23 weeks, my son was born at 29 wks. I heard of Maddie’s passing through the internet and I’ve been following your posts since. I can’t tell you how deeply your loss has touched me. I am so sorry that all of this has happened. I think of you and your family so often.

Sarah’s last blog post..Baby Toys

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67 Maeve April 23, 2009 at 7:52 am

Oh, Heather. I think of you and Mike every day, and cry for you, and wish like so many of us out here in the internet that I could carry some of your pain for you so you can rest. This will get much, much harder before it gets easier, but we will be here praying for you every step of the way. She was the most beautiful baby I’ve ever seen.

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68 Rachel April 23, 2009 at 7:53 am

I am glad you are posting again. I have been praying for you. I can’t imagine how difficult this must be for you and Mike. I wish I knew how to comfort you, but I don’t.

Rachel’s last blog post..Bullied

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69 kim April 23, 2009 at 8:05 am

I think of you and Mike daily. I lit some candles for Maddie over the orthodox Easter weekend just past…..I wish I could do more to ease your pain.

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70 Bonnie April 23, 2009 at 8:06 am

Damn that rocket for being so despised for so long and yet so hard to get rid of now.
Big hugs to you today, hoping you may have some sunshine in your thoughts.

Bonnie’s last blog post..The Great Paint Party 09!

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71 sam {temptingmama} April 23, 2009 at 8:08 am

I can only imagine how hard it’s been having that stupid rocket leave.

I will not ever let her memory die. Ever.

I love you guys!

sam {temptingmama}’s last blog post..Overwhelming Need

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72 Colleen April 23, 2009 at 8:17 am

Thanks for writing your blog, I check it often and think of Maddie almost daily. I tell her (your) story often and am still in shock. I will always remember your baby
with her fab eyes and darling toothy smile – I will think of her as in that last picture you took. Good luck, I am pulling for you both.

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73 mama2addie April 23, 2009 at 8:19 am

I’m at a complete loss for words…my heart breaks for you. You guys are in my thoughts daily.

We’re always here for you if you need to “talk.” We love you, Heather!

mama2addie’s last blog post..Please help if you can!

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74 Trish April 23, 2009 at 8:25 am

I am so sorry for your loss, this breaks my heart. You are in my prayers.

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75 Amy Franks April 23, 2009 at 8:32 am

I am so sorry for your loss. I can’t help but think of Ivan Karamazov, when he says in Dostoevsky’s novel that, more than anything else, the death of a child makes him want to give back his ticket to the universe. I feel that way too when looking at the photos of your brilliant girl. But I am glad that you are surrounded by the love and support of friends and strangers, and I admire your courage to hold onto your ticket in the face of such unfathomable sadness.

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76 Bridget April 23, 2009 at 8:33 am

I’m not a very touchy-feely kind of person, but I just want to fly to LA and give you guys big hugs. Guess this’ll have to do: ((((hugs))))

Bridget’s last blog post..Easy Applique

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77 Karen Sugarpants April 23, 2009 at 8:35 am

baby steps. much love to you both. xo

Karen Sugarpants’s last blog post..Remembering Those Who Stand By Our Sides

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78 Kristen April 23, 2009 at 8:37 am
79 tash April 23, 2009 at 8:39 am

This post reminded me of the fact that my Maddy’s identity was purely medical. I only had six days of drugs and tubes and terminology followed by a year and a half of tests and biologically-laced arguments. On the one hand, I loved it when a specialist called because they used her name — it was like we were having a discussion about her. On the other, I despised it. She was supposed to be so much more than machines-that-go-ping. Letting all of that go meant letting her go, too.

I am so incredibly sorry.

tash’s last blog post..Overheard

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80 Amy April 23, 2009 at 8:50 am

I’m so sorry.

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81 tara April 23, 2009 at 8:55 am

my heart breaks into a million pieces for you every day. i see purple everywhere i look now, and i am always thinking about your beautiful, amazing daughter. you and mike and maddie are in my thoughts every day.

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82 Miche@CoordinatedChaos April 23, 2009 at 8:57 am

I am so sad and sorry. I’m sending a huge hug to you and wish I could come over and just sit with you. I’m so very sorry.

Miche@CoordinatedChaos’s last blog post..Audio Cast with Suze Orman

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83 grgrgr April 23, 2009 at 9:07 am

rfwe

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84 amanda April 23, 2009 at 9:10 am

Sounds like you have a really awesome mom…

@tara- Same for me! Whenever I see purple, I automatically thing of Maddie.

amanda’s last blog post..Hungry?

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85 The Southern Mama April 23, 2009 at 9:22 am

I’m crying with you again…I seem to cry everyday. The loss is so great. Hugs to you and Mike. That sweet angel baby is in my thoughts everyday.

The Southern Mama’s last blog post..WFMW: Decoupage

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86 Just Jiff April 23, 2009 at 9:23 am

I wish we were friends in real life so I could be there for you in real life. I know that must sound strange coming from a stranger, but I feel so helpless sitting here at my computer.

Just Jiff’s last blog post..Got Hobbies? **LONG POST**

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87 ms. changes pants while driving April 23, 2009 at 9:27 am

oh, hugs. hugs and hugs and hugs. hugs to your and mike’s parents, too. i wish i had more words. i wish i had more, just more to …. help, give…. relieve.

we’re with you.

ms. changes pants while driving’s last blog post..happy birthday, mom

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88 Scott April 23, 2009 at 9:29 am

You’re breaking my heart.

Jodi and I have Morgan sleep inbetween us for the same reason Maddie slept between you and Mike. I feel comfort knowing that he’s there with the oxygen running. I look forward to the day it goes away…but not as much now. I’ll just keep hugging him and we’ll keep sending our love to you and your husband.

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89 Jeanne April 23, 2009 at 9:32 am

My heart breaks for you. I am so saddened by your loss.

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90 Karen April 23, 2009 at 9:46 am

I think you’re pretty incredible. This is such a sad circumstance, but I’m meeting so many amazing people. Have a great trip and a great walk :)

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91 Karen April 23, 2009 at 9:48 am

Sorry… was meaning to post that to Sam’s blog. Now I’m embarrassed but I can’t delete the post.

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92 won April 23, 2009 at 9:49 am

I remember “them” picking Olivia’s hospital bed up out of our home…

Worse yet was when they picked Olivia up out of our home for the last time.

I get it Heather. I hear you. I feel you.

I am here for you, if ever you need…

I’m listening.

won’s last blog post..Nice

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93 Alexandra April 23, 2009 at 9:53 am

My gosh, your poor heart. All these mundane things making your loss so real. All these things being taken away, saying “she’s really gone.” I pray for you. I pray that you believe you WILL see Maddie again. You will. Believe me. That sweet day will come…it truly will. And what a reunion it will be!!!!! I pray Maddie visits you in your dreams, so you know she is always with you.

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94 cat April 23, 2009 at 9:57 am

grieving with you today

cat’s last blog post..due

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95 april April 23, 2009 at 10:01 am

Like someone said… I wish we were “real” friends b/c I’d give you the biggest hug. I too check your blog obsessively… hoping to hear something that shows me that you’re making it through this suckdom that is life right now. We all love you and Maddie and pray for your entire family!

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96 Ronda April 23, 2009 at 10:05 am

I’m so sorry you are going through this. Continuing to pray for you all.

Ronda’s last blog post..Lots of Stuff

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97 Nicole April 23, 2009 at 10:06 am

You, Mike and sweet Maddie are never far from my thoughts. So many people are reading your blog, crying with you and thinking of Maddie. Love coming your way.

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98 Tina Hosko April 23, 2009 at 10:16 am

Oh Heather. I am sick for you. Absolutely sick and so sad.

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99 Krissa April 23, 2009 at 10:24 am

The first two sentences of this entry almost broke my heart because I *thought* I knew the pain that was to follow. If only it were so – but it was even deeper… I should have known. I have been trying to think of a “comment” and can not come up with anything, but I don’t want to say nothing because I am so moved….. I am so very sorry for your loss. And words are not enough. Maddie is remembered and cherished around the world with love … and you are in all our thoughts and hearts. Sending this with care and love to you and your family and friends.

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100 Cory April 23, 2009 at 10:29 am

I have been reading your blog for a long time now, and I can’t even remember how I got here, actually. I think maybe from Stefanie? The day I clicked on your blog and saw the sad news, I was at work and had to excuse myself to cry my eyes out in the restroom. I was in a horrible mood that evening and tried to explain to my husband why I was a wreck, but it’s hard to explain to people why you are greiving so hard for people you’ve never met before. But from reading your blog, I’m sure thousands of us feel as though we know you very well. My heart breaks for you both and I have thought about your family every day since Maddie’s passing. Please know that it has taught me to be more patient with my 6 year old (also a Maddy), and 2 year old, and to kiss them and hug them a little harder each day and not take their health for granted. This is every mother and father’s worst nightmare and I’m so sorry that you and Mike have to endure this. My thoughts and prayers will be with you…

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101 Sarah @ BecomingSarah.com April 23, 2009 at 10:29 am

My heart is still breaking for you. I wish I could bring back that oxygen rocket and the little girl who needed it. I am so sorry.

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102 Susanna April 23, 2009 at 10:34 am

Just keep writing. It doesn’t have to make sense or be perfect, and you don’t have to explain anything. If you can, take pictures. They, too, don’t have to make sense or be perfect or explained. I’m not suggesting these as distractions to make you feel “better” – but maybe as a way to just Be right now.

Not a day since April 7th has gone by that I haven’t thought of you and Maddie. You are an amazing mother to her.

Susanna’s last blog post..Musing on Fusing

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103 Lunasea April 23, 2009 at 10:39 am

My heart is also breaking for you. I was introduced to the beautiful Maddie via your blog and the world just isn’t as wonderful without her in it. I’m so, so sorry.

Lunasea’s last blog post..Random Thoughts on Gallbladder Surgery

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104 Adventures In Babywearing April 23, 2009 at 10:42 am

OH, my goodness. You, and your Maddie continue to touch my heart in ways I didn’t know you could.

Steph

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105 Amy April 23, 2009 at 10:48 am

What a bittersweet ending to the oxygen rocket. You, Mike and Maddie should all be CELEBRATING its departure together. We should be throwing a party for Maddie because its gone, not grieving its departure along with Maddie’s. Its not fair. Who would have thought that seeing the rocket leaving would be so hard.
I wish Maddie were here with you, in your arms, in your bed, oxygen rocket and despised cannula and all.

I am so sorry.

Amy
Oregon

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106 Jenn April 23, 2009 at 10:55 am

Again, there is nothing I can say to ease your pain, but I still have to leave a comment. I cry everyday when I read your posts, but I am glad you are blogging. I know it will help you work through this horrible loss. When my grandmother lost my mom she said it took eight years not to think of her every single moment of every single day….that stuck with me. I would think of her too, but I was so young it didn’t affect me as bad as a mom losing her child. It’s something a mother should never have to experience. We have been through such rough times this past year and a half since Jude’s stroke in utero, but Maddie has taught me to hug him tighter! She also inspired us to get involved in March of Babies. In addition to that my ten year old daughter is starting a charity where she drops off care packages to the Dallas childrens hospital. My daughter decided to name her charity “Emily’s smile boxes”. So even in death Maddie is spreading smiles!!!!!!

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107 Jackie April 23, 2009 at 11:07 am

Love you. I’m so glad I get to see you Saturday…even if I’m just filling your arms for a minute or two.

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108 Andrea's Sweet Life April 23, 2009 at 11:13 am

Heather, I was so worried you wouldn’t be back. Thank you for continuing to share your thoughts with us and allowing us to grieve with you. There isn’t a moment that goes by that I don’t think about Maddie, you, and Mike. I’m so glad Rigby is there to snuggle with you – it’s not the same, it’ll never be the same – but she’s there for you to hold when you need. Much love to you.

Andrea’s Sweet Life’s last blog post..Ho’ing Around

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109 Patois April 23, 2009 at 11:18 am

The three of you — and all those surrounding you — remain in my prayers.

Patois’s last blog post..All is Well

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110 Liz April 23, 2009 at 11:25 am

I’m so sorry for this. The Lord certainly answers prayers His way. I’m sure you (and Maddie) couldn’t wait for the day that you didn’t need that tank anymore. This is not the way you or anyone else had ever pictured.

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111 Shelley April 23, 2009 at 11:33 am

My heart aches for you everyday. I wake up thinking of Maddie and her sunny smile and I go to bed praying for your family. I wish I could do so much more. Take one moment at a time and remember how happy you made her.

Hugs!

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112 Christine April 23, 2009 at 11:40 am

Just saw your tweet. Hope you (and Dr. Looooove) are well. Sending good thoughts.

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113 jessica marie April 23, 2009 at 11:44 am

i think about maddie and you and mike daily as well. i have fallen in love with your baby and every night i shed tears of sadness for you and pray that you’re okay…

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114 JustAMom April 23, 2009 at 11:44 am

I’m just another stranger at a loss for words…….. I don’t know what to say, but I can’t not say anything…… thank you for sharing your darling girl with us. Her life made a difference…… since I started reading your blog, I look at my own daughter and think of all the times I told her Mommy is too busy….. Mommy needs to right now. How many times have I told a girlfriend “oh this kid is driving me nuts today?” I haven’t done that since I found your blog. Now I think of you and your Maddie, and I thank God she’s here to follow me around and mess up the laundry I already folded and spill her milk and play with the cat’s food.

I’m a better mother now because of your Maddie. I’m so sorry it took her passing to remind me to cherish every day with my own baby.

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115 Dana Zap April 23, 2009 at 11:50 am

I’m so sad that we can’t make the drive from AZ to CA to participate in Maddie’s walk this weekend…So today at work they were giving away trees for Earth Day and what a great way to turn it into my own Maddie’s Day on Saturday. We’re going to plant the tree in our backyard in honor of Maddie.. I will be there in spirit with you all..

Dana Zap’s last blog post..Sun, Apr 19, 2009

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116 feefifoto April 23, 2009 at 11:52 am

Would it help to have friends come in while you are out and gently pick everything up and put it away?

feefifoto’s last blog post..Don’t Hate Me Because…

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117 LovingDanger April 23, 2009 at 11:55 am

Yet another comment from a person “who doesn’t know you” but feels so much like I do. My heart is broken into what feels like a thousand pieces for both you and Mike. I like many many others think of your precious Maddie daily and am soo sorry for you loss! I want to thank you for sharing your daughters life with us. Because of you I am a better mother today. I have realized that I have taken my little girl and her health for granted, and to you I apologize for that!

Thinking of you, with all the love in my heart

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118 Sandra April 23, 2009 at 12:15 pm

I’m so very sorry for your loss. I’ve carried thoughts of Maddie daily since I learned of your beautiful child. Thank you for the updates. My prayers are with you and your family.

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119 (another) karen April 23, 2009 at 12:16 pm

still thinking of you and your family constantly. there are no words, so i won’t go on. but know that yet another stranger out there has all of you in her thoughts and is wishing you all peace and comfort.

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120 Andrea Gomez April 23, 2009 at 12:21 pm

hello, dear Spohr family… I came to your blog via Matt Logelin’s, who wrote about your daughter’s passing. it is absolutely astounding, how a complete stranger’s story can touch one’s life so profoundly. having a little daughter myself, I find myself imagining what it must be like to lose her, the dearest person to my heart – and my heart is shattering into a million pieces, when I think that ANYBODY has to go through what you had to experience. I now find myself thinking about your beautiful Maddie daily, thinking about the two of you daily, wondering from the bottom of my heart where you find the strength to go on.

I wanted to step up and thank you for writing about your daughter, and sharing with the internet community. your experience humbles me, makes me appreciate my beautiful and healthy daughter even more, makes me extremely thankful for every second I get to enjoy with her, for I realize that not one of them is to be taken for granted. I enjoy my time with her a lot more consciously now, I soak up her presence with every fiber of my being, I am more forgiving when she “acts up”, I am giving her a lot of “extra” love whenever I can. when I put her to bed at night, I hold her for just a bit longer, hug her just a little tighter, touch her cheek just one more time before leaving the room. and while I do, I send a thought out to Maddie and the two of you. I really do. your Maddie is turning me into a better, more conscious mother. I thank her and you for that with all my heart.

Andrea Gomez’s last blog post..Excuse the Mess…

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121 Glenda April 23, 2009 at 12:42 pm

Maddie has touched so many. Thank you for sharing her with all of us. (((((Hugs))))

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122 Sarah April 23, 2009 at 12:57 pm

We are so sorry for your loss. I read some of blog to my husband last night, telling him that there is just something about your writing that pulls me in… I sat on my couch with tears pouring down my face for an hour reading over your hearbreaking words. Though I have never met you, please know that I and everyone reading feel and share a fraction of your pain. It is my hope that us sharing your pain will help lessen it even the slightest.
G-d Bless You

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123 Misty April 23, 2009 at 1:05 pm

My heart hurts for you. I have too have a baby girl and to lose her would be unbearable. I am having a hard time typing through the tears running down my face right now. I have said many prayers on your behalf and will continue to do so. Thank you for sharing Sweet Maddie with the world….

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124 Sonia April 23, 2009 at 1:10 pm

Sending you white light and healing rays. Taking some steps for Maddie this Saturday at the March for Babies in Charleston, SC.

Sonia’s last blog post..The Power of the Pack

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125 Stefanie April 23, 2009 at 1:13 pm

just me. Here. Reading. Crying.

Stefanie’s last blog post..These Were a Few of My Favorite Things…

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126 Ashley Hast April 23, 2009 at 1:17 pm

Maddie’s Family:
My heart phycially hearts for you, yet I know I couldn’t even BEGIN to imagine the depth of your pain. I feel so fortunate that with my insane children, the most I’ve had to deal with in the past week is the dare devil Violet pulling acrobatic stunts off the “bonk bed” ending up with a broken nose and cheeks, and another crazy kid with Grade 1 kidney reflux. I never thought I’d be thankful for such things, but I am. Your precious Maddie has made me rethink, yet again, the important things in life. Lots of love and prayers are being sent your way from our little corner of the earth.

Ashley Hast’s last blog post..And *that’s* why I’m Mother Of The Year!

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127 Bridget Larsen April 23, 2009 at 1:21 pm

Your story has touched me ever since someone posted it up on a card making group and I’ve read every entry and felt every pain you’ve felt. I went through something similar to this and know with every bone in my body what you are going through and am sending you hugs over the great Pacific Ocean.
Maddie is such a beautiful baby, I can see it in here eyes and both you and Mike’s, what a gift she is to you and to everyone of us who read your blog.
May you feel at peace to enjoy every moment you had with her.

Bridget Larsen’s last blog post..Banana Cake (Fil’s) and Tiramisu

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128 Katie April 23, 2009 at 1:54 pm

I stumbled upon your blog a couple weeks ago and have been reading about you and your precious little girl. When I saw that she had passed away I was so sad. I cried when I watched your tribute video to her. I think of you and her everyday, and check your blog often. I cannot imagine the pain you must be feeling and I am praying for you. If it means anything, her death makes me realize that it is a privledge to be a mother and even though my girls make me crazy some days they are blessings from God and I should be thankful for every moment I have with them.

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129 Heather April 23, 2009 at 2:07 pm

I’m thinking about you and Mike all the time, and wishing you peace. My heart is broken for you.

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130 Blessed April 23, 2009 at 2:09 pm

just wanted to say that we’re still thinking of you and Maddie every day and praying for you too.

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131 Maria April 23, 2009 at 2:16 pm

I had no idea the rocket was that big.

Thinking of you and Mike and Maddie (and Rigby) every. single. day.

Maria’s last blog post..Girl Talk Thursday – Romance Novels

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132 Deidre April 23, 2009 at 2:20 pm

I am glad you were out of the house when they came to retrieve the rocket. No need to add more grief and sorrow to your plate. I am going to post on Mike’s blog today, because I have some advise on what to do with Maddie’s belongings.

I am hopeful today that you have made it through another day. One minute, one hour at a time, seems like we hurry up and wait for what? For the strength to know the next step to take in your grieving process. Sometimes those answers take a long time coming. It is ok, you are in no rush! Hugs to you sweet friend.

Deidre’s last blog post..What would you do for this family?

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133 Yolanda April 23, 2009 at 2:30 pm

Heather -

Good afternoon. I think about you and your family daily, please know that I am sending you love.

Yolanda

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134 Parsing Nonsense April 23, 2009 at 2:37 pm

I wish the oxygen rocket could have parted terms under happier circumstances. I’m so sorry you have to go through this. It is incredible to see how many lives and hearts Maddie and your family touched. She accomplished a whole lot in a very short time.

Parsing Nonsense’s last blog post..Customer Service Flunkie

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135 anymommy April 23, 2009 at 3:04 pm

I’m so glad that you are writing and letting us share just a tiny bit of the pain that these days are bringing you. I don’t know if it is lessening the burden one bit, but I am listening to every word and thinking of you and Maddie and Mike every day.

anymommy’s last blog post..Soundproof Glass

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136 Rachel April 23, 2009 at 3:05 pm

I am so sorry for your loss. Losing a child is the most unfair and horrible thing a parent can have to endure. Unfortunately, I know this from firsthand experience. You will find a way to adjust to your new reality; your new life that you never would have chosen for yourself. It sucks and it hurts like an SOB. I lost my son 5 1/2 months ago and my heart and arms still ache for him. The first few days were by far the worst, there were reminders of what my life should have been everywhere I looked. Reminders of him. Reminders of the happy days. But slowly the pain gets a little more manageable (for the most part) and the tears don’t just randomly start streaming down my face (for the most part).

From one grieving mother to another I wish you strength, peace, and love in the coming days, months and years.

Rachel’s last blog post..Random thoughts and an announcement

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137 Alexicographer April 23, 2009 at 3:19 pm

Like your last post, this one made me cry. Just wanted to let you know I’m thinking of you and of Maddie.

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138 Becky April 23, 2009 at 3:21 pm

I am sooooo sorry for your loss! I too have a baby in heaven…maybe it can play with your precious little one. My brother-in-law, as he was traveling heavenward, said he got to meet my little one and that he was precious. A mommy’s heart has so much trouble dealing with this kind of loss and I feel your pain with you. Please know that you are being held in the Father’s arms and He feels your pain with you and is carrying you through this time. Your pictures are precious and you are right…she loved the camera! Lots of love and hugs being sent your way!!!
Becky

Becky’s last blog post..This Side of Heaven

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139 jessica April 23, 2009 at 3:41 pm

by chance i clicked on maddie’s smiling face in a march of dimes ad on a different blog. i was directed to your site and am now in tears reading of your heartbreaking sorrow. i know that sorry doesn’t help. and i know that there is nothing i can do to make you feel better. all i know is that i feel like i need to let you know that i have now been touched by maddie’s life and it only took a minute. just a random click of the mouse and i am forever changed by her story.

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140 Laurie April 23, 2009 at 3:51 pm

I’ve just found you through Matt’s blog and have spent a great deal of time reading your blog. What a precious gift Maddie is. Her ginormous smile and ability to elude such a warm presence have given me such a sense of peace.

There are no words o describe how I feel about your loss, but I hope and pray that knowing you and your beautiful Maddie have truly lifted my spirit will provide a bit of comfort.

Your family and everyone who has been touched by Maddie’s passing will remain in my thoughts and prayers.

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141 Nikki April 23, 2009 at 4:03 pm

A friend sent me your blog, and my heart is breaking for you and your husband. You are enduring a pain I can’t imagine.

My Addison was born 10 weeks and 1 day premature this past fall. I can relate to your NICU experience, as we spent 52 days on that journey. I am a volunteer for our local March of Dimes, and will be thinking of you and Maddie this Saturday at our walk.

May God bless you all.

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142 Kellie April 23, 2009 at 4:26 pm

I think of you and Mike and Maddie everyday. Sometimes, it strikes me as “odd” that a family of complete strangers wanders through my mind daily. Most of the time, it does not. It’s one Mom thinking of another Mom and the loss she’s dealing with and my heart just breaking.

I stared at the picture of the tank in her room for 10 minutes. I didn’t want to. It hurt my heart to. But, I couldn’t look away, either. I can understand why you didn’t want to see it go and why you couldn’t be there.

I feel like I’m on repeat. But, I’m sorry. So, so sorry.

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143 Rebecca (Ramblings by Reba) April 23, 2009 at 4:28 pm

I had a sleep study done a few years ago. The nasal cannula SUCKED.

And I wish you were still having to fight her to keep it in. :(

Rebecca (Ramblings by Reba)’s last blog post..A different kind of recession…

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144 Scary Mommy April 23, 2009 at 4:35 pm

The quiet in your apartment must be deafening. Thinking of you everyday…

Scary Mommy’s last blog post..Kindergarten, here we come

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145 mrslala April 23, 2009 at 4:44 pm

I think of Maddie, you and your family each and every day. My heart is breaking for you – I wish more than anything that there was something I could do!

mrslala’s last blog post..Bug Update

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146 Kim April 23, 2009 at 5:39 pm

Although I have only just found your blog I have been touched by what you and Maddie have gone through. She really looks beautiful and happy in all the photos. God’s plan for Maddie to be here on earch was only for a short time I suppose. How wonderful you were to be chosen to be her parents and spend that precious time with her and love her as you did. Your heart is broken and you miss her so much. She will always be with you in your heart and you will see her again in heaven I am sure. Take care of each other.

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147 Gina Dunn April 23, 2009 at 5:39 pm

I came across your blog because I had signed up with 5 minutes for Mom and they had an article about Maddie’s passing. I have visited your site every day. I have been praying for your family and you are in my thoughts daily. I have wanted to post a comment, but not sure what to say. I just want you to know that you and your family are in my prayers and you have touched my heart in ways that I cannot put into words. I am so, so sorry that you and your husband have had to endure this. I am glad you were blessed with her presence. But I am crushed that you had to experience the loss. May God bless you and keep you firmly in His comforting hands.

Gina Dunn’s last blog post..Another good day….

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148 Haley-O April 23, 2009 at 5:57 pm

No words, Heather…. You are in my thoughts. ((hug))

Haley-O’s last blog post..New Job, Fat Tigger, & Other Earth Day Sundries

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149 Danielle April 23, 2009 at 6:07 pm

Loving you Heather.

I come here and read and my throat closes up again and I cry. Just cry.

I worry about you and Mike. Thinking of you.

Danielle’s last blog post..Madeline Alice Spohr

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150 Kirsten April 23, 2009 at 6:21 pm

I’ll never forget when they came to take the hospital bed out of our home after my stepfather passed away (he battled cancer for nine months)….as much as I hated seeing him in that bed, seeing them tear down that bed and take it away was a punch to the gut, a hundred times over. That was before I was a mother…when I think of what you are going through now, which I think of every single day, I can honestly tell you my heart hurts in a way like never before for you guys.
My new favorite song is “Daughter” from the tribute video and every time I play it (on my hour commute to work), I see Maddie’s beautiful face.

Kirsten’s last blog post..My Everything

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151 Midwest Mommy April 23, 2009 at 6:29 pm

I wouldn’t have been able to call either…

Midwest Mommy’s last blog post..The Watcher

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152 Caroline April 23, 2009 at 6:44 pm

My heart is breaking for you and your gorgeous Maddie. You are in my thoughts and prayers everyday. I am so very sorry for your loss.

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153 Caroline April 23, 2009 at 6:45 pm

My heart is breaking for you and your gorgeous Maddie. You and your family are in my thoughts and prayers everyday. I am so very sorry for your loss.

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154 Mary April 23, 2009 at 7:01 pm

I keep thinking I’ll have the perfect writing, the perfect phrases that will make you feel just one tiny bit better for just a split second. But I don’t, because really what is there to say that would make any of it any better? We’re sharing in your pain as much as we can; hopefully that helps lessen the burden. I’m so sorry for your loss of your and Mike’s wonderful Maddie Moo.

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155 Rae Wilson April 23, 2009 at 7:02 pm

I am so sorry. I haven’t left a comment because, what do you say to someone who just lost their child? I haven’t followed long. I wish I had, but none the less, Maddie did touch my life. I have a 6 year old, and since reading your blog, I have started my own. I have been meaning to for a long time, but just never got around to it. You and Maddie have shown me that life is too precious to sit idle. I want to remember every moment of my son’s childhood for the rest of mine, and his life. Thank you, from every fiber of my being. Blessings to you and Mike.

Also, I love motorcycles, and here in Kansas City, MO, we have the largest Bikers for Babies ride in the country. This year, I ride for Maddie.

Rae Wilson’s last blog post..Why?

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156 Jordy April 23, 2009 at 7:04 pm

Heather honey…. first of all I want you to feel a big tight strong HUG right now. If only you knew how much I’m hurting for you… every day I check your blog (twice a day) and every day I just pray and pray that your pain will somehow start to “numb” soon. I spoke to your dad yesterday for a while and I told him that you are definitely THE strongest person I have ever known. To go through this nightmare and still be able to write about it and share it with the world is absolutely incredible. I just wanted to tell you once again that i love you and that I am right there with you in my thoughts, every day through this very difficult road. Count on me, always!!! XOXO

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157 Erica B April 23, 2009 at 7:09 pm

Being a hopeless blogoholic, I followed the yellow brick road from another blog to yours, and was mystified by this other-worldly beautiful creation that is your sweet daughter. Your photographs captured a boundless soul in it’s resolute springing to shed a body too fragile to contain it. Whatever your faith, believe this, God’s creation has no “undo” button. All He creates endures. She is here, around you, blossomed into the fullness and wholeness of the glorious angel we could only catch a glimpse of in photograph. Can you imagine that spirit set free from these earthly limitations? Our hearts ache at being forced to release all the hopes and dreams of a practical world and you pray that your memory remains sharp and clear because it seems it is all you have to hold onto, even when it is too painful to remember. Sadly, we are yet in our confinement to the world of feeling and thinking. Be comforted because your sweet angel is not “gone”, but transcended to the world of being and knowing. She will not take her old form again, as beautiful as it was, but she is there peeking in on you here from a place she wouldn’t leave for anything. If you look for her, you will find her, breathing soft kisses to you and scuttling you along in life. When your heart breaks at some human reminder of your loss, feel what there is to feel and pay tribute to her existence, as you have. But, also, live. Live, simply because she did. It seems she filled every moment of her life on this earth with indomitable spirit. Give her the gift of living out every second with your spirit as present and engaged as hers. May the love of God and humanity enfold you, support you, and sustain you.

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158 Annie April 23, 2009 at 7:55 pm

I don’t blog, never have, in the shape of a mother there was a post and that’s how I discovered your blog. I’m from dominican republic and I have a baby, I don’t know you guys but everytime I read one of those post about Maddie, tears come along, in spanish we say “te acompano en tus sentimientos” wich will be I shared your feelings in other cases I don’t like saying that cause my pain will never be as bad as the person who’s suffering the lost but this time I think I can say it cause not only hurts my heart for Maddie but it hurts for my Maia too cause as I’m reading I put myself in your place, picture all in my mind and that’s when it really hurts, what can I do to help?

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159 Lisa April 23, 2009 at 8:11 pm

Dear Heather and Mike,
I’m so terribly sorry that your beautiful, precious angel is gone. My daughter is a month younger than Maddie, and I’m weeping as I type this from having read your posts. I tried for a moment to put myself in your shoes, and it was too unbearable to even keep trying. I am so, so sorry. Maddie and you are in my thoughts and prayers.
Lisa

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160 moosh in indy. April 23, 2009 at 8:25 pm

I stubbed my toe on that damn rocket more than once.
But still.
I wish it left your life under better circumstances.
Did you tell the medical supply place they are now proud owners of some of my toe flesh?

moosh in indy.’s last blog post..healing my helplessness.

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161 merlotmom April 23, 2009 at 8:26 pm

My heart is breaking all over again. I am so sorry. That was devastating to read much less to have to go through, I”m sure. My love to both of you.

merlotmom’s last blog post..Earth Day Is Every Day: Stop Using Plastic

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162 Jennifer April 23, 2009 at 8:29 pm

Dear Heather,

You are in my thoughts every day. I can’t imagine the pain you are feeling but I am so glad that you are surrounded by family and friends who love you and will help you through each and every day.

Jennifer

Jennifer’s last blog post..Daddy’s Girl

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163 Jennifer April 23, 2009 at 8:31 pm

It’s Jennifer again. So sorry. I tried to delete the link to my blog and last blog post so it wouldn’t show up. Please ignore. :-(

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164 Charity Baillio April 23, 2009 at 8:48 pm

I am so, so sorry…

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165 Michelle -WhiteTrashMom April 23, 2009 at 8:55 pm

Oh baby. Wish I could do something, just sending prayers, lurve to you and Mike. Will be there in two weeks.

Michelle -WhiteTrashMom’s last blog post..Toddlers & Tiaras: Got Butt Glue?

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166 Loralee April 23, 2009 at 9:11 pm

Oh, that photo kills me. :(

Loralee’s last blog post..Update

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167 jen April 23, 2009 at 9:52 pm

thank god for moms. we (and they) do so so much for our (and their) children.
and you are one of the best. madeline was so lucky.

jen’s last blog post..if you want it …

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168 Lacey April 23, 2009 at 10:05 pm

I’m very sorry for the loss of your sweet little girl. I spent last night looking through your blogs & watching the memorial video made for her. Needless to say, I was in tears. Tears for the fact that her precious life was cut short & tears for her family members left here without her.

I am an “angel mom” as well. I lost my 3yr old son 11/16/06 to Meningococcal Meningitis. So, sadly, I understand the horrible pain your going through.

She has that “full of life” look in her eyes just like my Landan did. So vibrate & made everyone extremely happy. Even though she was born premature it sounds like the end of her story was unexpected & unseen, as it was with my son.

I just wanted you to know that I’m thinking of you during this time, and will be thinking of you during the rough roads ahead. If you want to talk to someone to “understands” please feel free to email me.

-Lacey, Mama to Angel Landan-

Lacey’s last blog post..Meningitis Awareness Week Day 4

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169 thiskat April 23, 2009 at 10:29 pm

I saw your Twitpic of the purple monster, and went through your past photos there. I remember you said you were upset you didn’t get a picture of yourself with Maddie in that amazing shoot you did the weekend before she died. And then I saw this: http://twitpic.com/25pfm What a great photo. I can’t believe it’s been 2 weeks already. Thinking about you all the time.

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170 lisa wood April 23, 2009 at 10:33 pm

As a mum to five boys I can not imagine what you are going through right now.
My oldest had a breathing problem when younger and had to have a sleeping monitor placed on him 24/7 for the first 12 months and he was amazing strong.
My heart goes out to you and your husband. You guys are one amazing family…..you are strong and such loving parents to share your gorgeous girl with the world. If I could place my arms around you and give you guys a hug I would. But seen as I am too far in distance know that my thoughts, prays and love is sent your way.
Maddie was the most beautiful girl and her smile lights up the world. Know that she will never be far from my thoughts.
I have never had a daughter and I never will……but your daughter makes the world a better place.
I will be buying purple and will be remembering Maddie.
Love, prays and thoughts sent your way.
Lisa xxxx

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171 Tricia (irishsamom) April 24, 2009 at 5:22 am

Heather, I don’t know you and you don’t know me. I am a follower of Matt’s blog and came to your story through his post. All I can say is that I too am a mama, and my mama heart is breaking for yours. I feel as if though your beautiful little girl has touched my heart in a very inexplicable way. She just radiated love. Beauty. Passion. I wish I could say or do something to take away the pain you and your husband must be enduring. I wish I knew how to help. I am a huge advocate of March of Dimes, having had two bedrests – the second one 18 weeks. I will donate in Maddie’s name. I know that won’t change your hurting heart. But her face will never leave my mind. All I can do is pray for you to get through the days and know that she has left a permanent mark on those who even just got to see her pictures. My heart breaks for you. Your daughter is a remarkable spirit.
With love and prayers,
Tricia and Family
Northern Virginia
irishsamom@msn.com

Tricia (irishsamom)’s last blog post..Hope for Spring

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172 Amy April 24, 2009 at 5:41 am

I am thankful that your mother was able to be there for the pick up. You and Mike have been through so much.. it is good to let someone else do a few things so that you can focus on the everyday things… a walk, the dog, getting outside. You can do this…

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173 jaded April 24, 2009 at 4:03 pm

i just want to hold your hand right now…just know that.
i look at videos of sweet little Maddie and my heart just plunges.
What a loss, what a magnificent loss…
I have had two pregnancy losses at 22 and 23 weeks – Emi and Daniella respectively. Daniella lived 3 and half hours. I left the hospital empty handed both times. Your story touches me so deeply because you got to take her home despite your difficult pregnancy and you both struggled and fought for her and she fought also…i don’t know what i am saying or where i am going so i’ll think i’ll stop. just know that you have one more person ‘out there’ that is devastated for you you and your husband…one more person that was touched so deeply by her sweet smile, that i feel like i lost her also.

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174 Jill April 24, 2009 at 4:15 pm

Oh, Heather. I prayed for you and Mike and your families at mass this morning. You are in my thoughts every day. I am so sorry for you and wish there was some small way we could ease what you are going through.

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175 Regina April 24, 2009 at 8:00 pm

I’m so sorry for your loss, she’s a beautiful Angel. I lost my grandson before we were even supposed to meet him at 23 & 1/2 weeks he was so tiny and frail and God had special plans for him, words could not explain anything or really help, but there is a special Angel for you, she’s the unexplained strength when you need it.
My sister said the same about her husbands oxygen tank, she wanted it gone but now she wishes she could stubb her toe on it again, she misses him bunches.
I hope in time a healing process can begin.
Thoughts, prayers and hugs
Regina

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176 Denise April 24, 2009 at 10:11 pm

When you write, I will read it. When you share such emotion, I will feel it. You are in my thoughts.

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177 Kristy @ Mommy In Pink April 25, 2009 at 7:03 am

God Bless You. Since hearing of Maddie, my heart was truly touched and I signed up almost immediately to walk for the March of Dimes in my area and start collecting donations. You are a strong woman and I truly wish you and your family the very best in such trying times!

Kristy @ Mommy In Pink’s last blog post..Get Ready…

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178 Christy April 25, 2009 at 6:02 pm

I came across some words the other day that have become my new favorite quote. I thought you might appreciate them too…

“The length of a life does not reflect the depth of the love shared between a parent and a child. From day one children give and receive love with grace. Their hearts are open to the possibilities and free of doubt and fear.”

I wish for you purple-filled days to remember the beauty of your daughter.

Christy’s last blog post..April Showers Bring May Flowers

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179 Stacey Wood April 27, 2009 at 5:07 am

I am truly sorry for your loss. I can’t even begin to imagine what you and your family are going through. I came across your blog through Matt Logelin’s blog. I also now check yours everyday. (My son is battling some issues as well, and I also blog as a way for some release) I just want to you know, my thoughts are prayers are with you and the family. Your daughter is just beautiful.

PS. I feel the same way about the oxygen. I have the same feelings with my son’s oxygen.

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180 Erin peel April 29, 2009 at 2:05 pm

I stumbled across your blog through Petroville. My heart breaks for you and your family. My best friend lost her 13 month old Daughter Ellie two years ago. Everything about Ellie was pink so now at sunset or sunrise when the sky looks bright pink we say that Ellie painted the sky pink for us. Now if I see a beautiful purple sky I will think of your Maddie. My heart breaks for you. Keep writing. My friend had a page where she reflected, screamed on-line, got pissed off or just remembered a special moment. It helped her heal. My heart aches for you.

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181 Shashi May 6, 2009 at 12:41 pm

I have just started reading your blog, stumbled on it. I dont know if you believe in a life after death… I sure did not, being a die hard rationalist….till I had my daughter. Now I want to believe in it all. In an omnipotent entity that will take care of our babies in this world, and should the unthinkable happen that they will be loved and continue to exist in another plane. Why not ? its not like there is proof of it not being so. I chose to believe Maddie is somewhere where you cant see her but she can see you and is happy and wants to tell you “its ok Da Doo I am doing fine here and I love you”.

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182 Jypsie October 28, 2010 at 1:54 pm

I’m so sorry for your loss I lost my 5 year old in a car accident 2 years ago and I don’t think anybody really can ever really forget about thier kids people that think so need to have kids to see what it feels like just when they leave for a sleepover good luck with coping just know shes always gona be with you

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