The Universe and it’s ways…

Those of us who have had traumatic experiences in life often wonder Why Me? Why Us? Why Now?  I am not a believer that the Universe has a set plan for everyone that is followed on a straight course of life.  That said, I AM a believer that there are people and things that occur in our lives that align like the stars and if you pay attention, you’ll realize that the Universe is telling you something at that moment.  I don’t mean that the universe talks to you in voices or that there is a ring of light shining like a neon sign down a path or that special person, because that would just be silly.  It’s taking in the sights, sounds and words of others you come in contact with and taking note of the things around your environment where you’ll see them.  I’ll share some experiences with you:

The biggest one I can refer to is what led to the start of this organization. After Delilah passed away, I had many people that would reach out to me, and not only would they check in on how our family was doing, but they would also tell me that they had thought about her often, and that she had impacted their lives in some way.  The stories weren’t just from our close friends and family, but from people who would tell me this when I had not seen them in months, they were past friends who we rarely got to see anymore, but she had made enough of an imprint on them for them to reach out and say something.  After thinking about that for some time, I realized that this was the universe speaking to me; telling me that her short life was not for nothing, and that she was not done yet making her mark on this world. And so the Tangerine Owl Project was created.

Another experience was random, or was it? Bright Tangerine orange was the color that reminded us of our little girl.  She was not the fru fru light pink, and had never done anything muted in her life. I had always loved lilies, but not the stargazer ones, or even the casablancas, I loved the vibrancy and the in-your-face vividness of the orange ones… Delilah’s middle name was Evangeline, and my husband called her Lily for short sometimes.  It was for those reasons orange lilies were our memorial flower of choice.  They symbolized a small representation of her. A few months later, after we had moved into our new place in another city, we were leaving our house to take our children to school and in our front yard, what had bloomed, but orange lilies.  We hadn’t seen these yet, because it had been too cold, and it wasn’t anywhere in the pictures of the home when we were looking – completely random, and perhaps coincidental, but I had been having a hard time that day and had been thinking about Delilah almost non-stop for those last few days, and had cried myself to sleep the night before for whatever reason I was thinking about her being gone.  That morning, I couldn’t help but smile when I saw those lovely flowers because to me, they were a sign that she was still there with us.

Another more recent, was the case of a few lovely ladies I met recently.  I had been at my regular coffee shop one weekday morning just grabbing a cup before heading out to start my day and happened to see a friend of mine (who is a superb people connector) sitting there chatting with another lady.  He does a lot for our community and seemingly knows everybody so I said hi, not wanting to interrupt their conversation. While doing so, he introduced me to the lady he was with, turns out she is with a blood donation company, and they were just discussing how summer is a hard time for them because people tend to donate less in that time, but the need is still in great demand.  So I say, well, if you guys figure something out I’d love to help out with it, and take her business card, say my goodbyes and leave them to get back to their meeting….. I emailed her later that week to say hi and follow up, and when I did that she had mentioned that she’s working with a local resident to put together a blood drive to honor her son (yep, the one I’ve posted about earlier this week), and if I wanted to meet with them they’d be happy to work together. When we held that meeting, in talking to this boy’s mother and telling her more about the Tangerine Owl Project and Delilah’s story, I found out that her son had been a preemie as well (due to being a triplet), and she had had her own NICU experience in addition to the battle with Leukemia her son had faced in later years.  We all laughed at the fact that the stars had aligned to bring the three of us together to now put on this upcoming event.

Some people argue that with cases as this people are searching for any connection to their loss or something that’s on their mind (like how people trying to conceive take more notice of baby bumps, children playing, etc.), and some will argue that its all random chance.  This may be the case, but instead I’m choosing to believe that the Universe chooses to communicate with us sometimes, and listening to it when we notice leads to something positive.  These aren’t answers to the “why?” or “why me/us?” but rather sometimes the “why now” and “where do I go from here” if you’re lucky enough to catch the whispers.

Summer Blood Drive

We are THRILLED to be sponsoring a summer blood drive to honor of Griffin Maks, a little boy who had leukemia and is now in remission.  This incredible Skokie family has endured a lot…. Not only was Griffin a triplet who was born prematurely and spent some time in the NICU and received transfusions, but at only a few years old, he was diagnosed with leukemia.  We are happy to say that Griffin has made an excellent recovery thanks to blood donations supplied by Heartland Blood Centers – 

Did you know that cancer patients receive just as much blood, if not MORE, than those in accidents that need transfusions? And preemies are often in need of multiple transfusions throughout their stay at in the NICU.

So now, we’re partnering with Griffin’s family and HBC to try to give back. Time and details to be announced, but keep a lookout for info soon. Each donation can save 3 people!  It’s amazing, and just because it’s summer doesn’t mean that people don’t still need blood each and every week….


Letter to NICU parent

I am not surprised, but I am overwhelmingly encouraged to see that there are other organizations that are dedicated to helping parents make it through their time in the NICU.  I found this letter, and it is inspiring and perfect in almost every way so I wanted to share. Because HOPE is needed every day, whether its day one in the NICU or day 564. There is no straight line to walk, there is no NORMAL in the NICU.  So, for those who want to support those they know who are fighting this fight and who are wondering what they could do, click through the link above to read the letter on the blog Life With Jack. PRINT this letter and give it to the ones who need it. It will matter and it will make a difference, if only for a moment, I promise you it will. 

Cheers & Hugs

I want to remember this…

Something I bet you would never expect a parent to say; and it’s BEAUTIFUL.

Expecting the Unexpected

They called us back to the NICU.  We had been back in my labor room, away for only a few minutes and had spent the time calling family to tell them to come now; her time was short.  It is never a good sign to be called to the NICU.  Her oxygen sats were dropping.  Her chest xray showed a collapsed lung and another leaking air.  She looked so purple lying on the warmer.  Beeps of machines.  The whoosh of the ventilator.  Her oxygen levels flashed on the screen…58…54…55…54.   Those numbers should have been in the 90s; when we left they had been holding steady in the 80s.  I took it all in… my baby was dying.  They sat me in a comfortable chair and put up a privacy screen, perhaps so other families wouldn’t witness our suffering, perhaps so we could have our pain in private.  From where I…

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How To Stay Sane In The NICU

So So true. All really great points. It’s up to you if you feel emotionally ready to talk to other parents at get togethers, but I agree with finding a way to disconnect from the baby’s isolette if only for 15 good minutes. It’s hard to pull yourself away, but it’s necessary for everyone’s sanity. Warning: this is SO MUCH harder to do than it sounds, but you can do it.

Rockstar Preemies

Having a baby in the NICU is an intense experience that hits you like a giant slap in the face.  Then it waits for you to shake it off, and it dropkicks you in the stomach.  Not only are you heartbroken and terrified and desperate to see your baby grow and develop and eventually be discharged, you are also constantly on the verge of losing your mind completely from the stress and exhaustion and worry and all the emotional ups and downs.

The good news is that there are many (many!) of us who have been through it, and we’ve learned a few things about how to hang in there.  And while no families have the exact same experience, there is a lot of overlap in how parents tend to feel during a NICU stay.  So if you are pregnant, have a baby in the NICU, or know someone who does, hopefully this…

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Now I Lay Me Down To Sleep – Remembrance Photography

If you have a sick baby, this may be one of the most valuable memories you can have.  These professional photographers donate their time and talent to this organization and will come to take precious photos of your little one in a way that will provide solace in a time of loss.  Whether they were born sleeping or whether they end up very ill after birth, the care shown is phenomenal in these moments when families are suffering so much.

Memorials for Preemies

I believe there is a sort of stigma attached to infant loss, and openly grieving is difficult for others to take in.  When a baby passes away, especially a preemie who may have never had the chance to meet anyone beyond their parents and caregivers or a baby who was born stillborn, it may be thought of as odd to hold a funeral/memorial service. 

Do they even make caskets that small? You may wonder?  Why yes, they do. For those parents who want to share their little one with their families and friends by holding a memorial, please don’t hesitate because you think it will be “too morbid”, too sad, or because others never knew your child.  Death is an uncomfortable subject, and those that occur taking the lives of babies just born are especially tragic, but we parents grieve like any other. If this can help to provide comfort and/or closure to the parents, then they should hold a ceremony that is meaningful to them.

No body is necessary, you can choose to have a service in which you share your little one with others in remembrance through pictures, stories, and songs. We were able to celebrate the short life of our little one and grieve the loss with those who we loved around us. To us, it was comforting to share stories about the first time we held her tiny little hand and the heartache that we were feeling.  We felt she deserved to be known.  She deserved to be acknowledged, and she was an inspiration to us, so we shared what we could so that she could also inspire others.  Don’t forget that this is also a chance for others outside the immediate family to be able to share their feelings.  The loss of an infant profoundly effects the parents and siblings of that baby, but just like a drop in water, ripples onto grandparents, godparents, cousins, friends of the family, etc.

All footprints …


All footprints start small, some are born as small as a wedding ring.
From the precious beginnings of that first breath of life, a premature baby will open your heart to miracles of life…..
Trust in their determination and in time, their footprint may be larger than yours…..

Author: Julia Toivonen

NICU experiences – We want to hear your story

Dear friends,

By now you have hopefully heard or read our story / the story of Delilah, the inspiration behind the Tangerine Owl Project.  We’re happy to share her story with you, but moreso, we want to hear your stories.  We invite any of you who have experienced time in the NICU to share with us. Near and far, the good, the bad, the ugly, and everything in between. 

Are you there now with a preemie?  Did you get to take your precious one home having “graduated” from the NICU?  Are you still battling with the loss of a dear little angel? Struggling to find the right diagnosis?  Maybe you’re on day 542 of your child’s NICU stay – it’s old school by now, but you have a story –

There is so much that can happen, so quickly and so turbulently, so please share, and know that you are not alone going through this.