Finding Purpose

I have been thinking about this for some time and I've had several other people ask me about it. How do you find purpose in all of this? How do you make something good out of something terrible?

For me, finding something that gives me a purpose and direction has been wonderful. And healing. And wonderfully healing. After Carter died, I felt a little bit like I was lost and wandering. I knew that I wanted to do something positive with everything we had been through, I just didn't know what. The death of a child is completely devastating and I knew that it was something that I could let bring me down (besides the normal grieving, I totally support the grieving process). But I didn't want it to become my life. I needed to make something more out of Carter's life. The time and energy that I never got to put into raising and loving him, I needed to put toward something else, something that mattered to me.

For me, this something to drag me out of the darkness has been diapers. Lots and lots (and lots) of diapers. Teeny Tears has donated over 10,000 diapers, and we have contributed around 1300 of those diapers. Teeny tiny diapers, and little bitty diapers in all kinds of colors and prints. It lets me do something constructive with my time. When I feel like I need some "Carter time" or I'm having a particularly rough day, I make diapers. It gives me the chance to feel what I need to feel while moving forward at the same time. I hate that there is even a need for these diapers, but my prayer for each little one is that it can bring some family somewhere even the tiniest bit of hope. And that it can help them to know that someone out there cares about them and thinks that their baby matters and is just as important as any other baby.

 {Cohen loves to help pick out the fabric}

The other cool thing that has happened is that as I work on these projects with my family and friends, they become a part of the process. They see the teeny, tiny diapers and realize that there are tiny babies that are deserving of these little diapers. And they see how many diapers we are making and they get a little glimpse of the fact that there are a lot of families that lose babies, it isn't an isolated thing. It makes me feel so loved and supported to know that I have people in my life willing to take on this project and help out. It's hard to to talk about babies dying and it can be uncomfortable. But, I have found that this makes an easy way to share and work on something together without having to just sit and stare at each other. This way, it just feels more natural and if anyone wants to talk about it, we do, if not...we make diapers. And I am so incredibly grateful for my friends who take fabric home and cut out diapers and for the people who drop off flannel donations at our local fabric store and for the store who is willing to collect the donations for us. It really is a wonderful thing.

 

 {Diapers waiting to be ironed}

The other thing we have taken on last Christmas and again this year is taking care packages to our NICU in Seattle. The diapers are for Carter and the care packages are for Cohen. Something for each of my boys. A small way to give back and to tell them that their lives are important. I want them to know that I am so thankful for each and every moment that I have and had with both of them and that we can help other parents and babies too. I remember last year aftert taking on the care packages that I kind of wondered what I had gotten myself into. I had started with the idea of just making a few and taking them to the hospital. Then I got word that we would need to be able to offer a care package to every family currently in the NICU. Makes sense, but where on earth was I going to be able to find enough things for 40 care packages in a few short months!? And then the word got out, and people started helping. And helping and helping and helping. And we ended up meeting and exceeding our goal. And it was awesome. The love and support we felt still warms my heart. People who didn't know us, or hadn't had a preemie, were willing to give of their time and resources to help out. (More details on NICU Care Packages 2012 coming soon).

{Diapers in memory of TTTS angels}

 

In the end, I feel like it is me who has gotten the most out of all of this. Through wanting to do something to make sense of our loss and to keep myself busy, I have been given great things. Love and support and new friends. I have been continually amazed at people's generosity and willingness to help. I had no idea that it would be a continual thing or that anyone would want to help out. It has been so healing for me to be able to work on these little diapers and the care packages. It has been a way for me to make sense of things. Not that Carter's death with ever really make sense, but it helps me make sense of the "what now?" part of grieving a child. What am I going to do with my sadness and my grief? For now, and probably for a long time, I will carry on with my little diapers. So here I am, trying to make sense of my life, one tiny diaper at a time.

An All Over Monday Update

Thanks for sharing your tips on the "I need sleep" post and on the "Appointments" post. Sometimes being a mom is so hard and it's nice to feel supported.

Alright, time for a little life update. It feels like we've been so busy!

 Cohen had his last day in the church nursery on Sunday for quite some time. Hopefully we will be able to beg someone to come and stay at home with him once in awhile so we can still get in to church. We tried sitting in the back of church with him and he is just way too busy and too loud.

We are setting up a time to get our family pictures taken and we are really excited.

Cohen is still active and busy as ever. He's transitioning from two naps to one (and back and forth again). He hasn't been sleeping that well at night, but I think he is just sensitive to changes in his routine and likes to know that we are still here. Sometimes a baby just needs his mom and dad, and I'm okay with it (although tired). I think he is really close to walking. He is taking steps between us and will even let go of the couch to take a few steps to one of us. He walks around with anything that he can push...chairs, tonka trucks, tupperwares, his little walker toy. He has this little game where he will pull up to stand on one of us then get one of our hands to hold onto and then put his arm out and reach for our other hand so we can walk him around the house. Again and again. Our quest to teach him baby sign language still hasn't gotten anywhere, he just doesn't seem interested. He still LOVES to eat and generally eats anything in sight. We are so thankful for this as we know there was a huge potential to develop oral aversions because he was intubated for so long and just had a lot of negative experiences with his mouth when he was so little.

 {Out for a fall walk. Love the changing seasons and this boy!}

 We've still been working on diapers. My mom just finished her first hospital donation that she did all by herself! We are having a little diaper get together soon as we now have over 600 diapers to make. We also dropped off over 100 diapers to UW when we went down for Cohen's appointment. We were able to donate these diapers in memory of a baby boy who was born and passed away there recently. His mom received a diaper for him while she was at UW and she found her way to the Teeny Tears group and is now involved in making them herself. It gives me chills.

{We got to meet up with Eli and his mom for a quick playdate}

 Somewhere in there, I made this little quilt for our friends who are having their first baby soon. I think it turned out pretty cute. I made sure to leave a few mistakes in it, like the Amish do, so that she would remember that nobody's perfect.

Other than that, it's the same ole, same ole. Mr. Stinkers still stinks, our house is still messy, Cohen is still incredibly active. Just how we like it. And when I get back into doing Fess Up Fridays, I have a lot of things to confess. And lastly, here is a video of the young master practicing his walking (and eating leftover breakfast off the floor). Happy Monday!

A Letter from Some Tired Parents - Please Help!

Dear People,

I need some advice. Cohen used to be a good sleeper. Like really good sleeper. Sleep 12-13 hours through the night kind of good. Starting a few weeks ago when he had his cold, he stopped being a good sleeper and started waking up throughout the night. Some nights he still sleeps okay but sometimes he is up 5-6 times a night crying.

We've tried letting him cry (it just gets worse), we've tried going in and giving him a quick hug and laying him back down. We've tried rocking him (he goes to sleep, but still seems restless) and then we lay him back down and he screams again. He sleeps with a fan on and he has a little night light in his room.

Last night, out of desperation, I took him into our bed with me. And he went to sleep!!! I'm totally surprised because that is the last place I ever thought he would sleep. Bedtime is serious business for Cohen. He generally doesn't want to be rocked or snuggled, when it's bedtime, it's bedtime and he wants to be in his crib. On the rare occasion that he did wake up in the past, we could snuggle him real quick and easily put him back in bed. Now, even if we snuggle or rock him he keeps crying. It's like he's awake, but he's not awake. And he seems very restless.

Now, I don't want to support his bad sleeping habits if he's just being a turkey, but I also don't want to ignore him if he needs something. I don't know if he's having bad dreams or if it's something else. Helllllllllllllllllllllllllllllllllllllllllllp. I like sleep. Really like sleep. Like Cohen used to.Thoughts? Advice? Sympathy? :)

Thank you!!
A Few Tired Parents

Capture Your Grief: Day 19 & 20

I am combining these two because they kind of go hand in hand.

Day 19. Project Have you worked on any projects inspired by your loss? They could be anything from an art project to organizing memory boxes for a hospital. If you have not yet done a project you could share something that you would like to work on.
Day 20. Charity/Organization Share your favourite charity or organization that has touched your heart on this road of grief. If you don’t have a photograph to share, just simply post the link to their website!

I bet you can guess what my project is. Yep, Teeny Tears!!  I can't even begin to explain how healing this project has been for me. In case you haven't heard about it, it's a group of volunteers all over the US (and beyond) that help out with some or all of the process of making tiny flannel diapers. The teeny diapers come in 2 sizes and fit babies 18-32 weeks. I would have loved to pick out and put a diaper on Carter. My hope in doing this project is that grieving parents feel the love of someone else who has been there. I hope they feel that their babies are valued and treasured. And I hope it provides them even the tiniest amount of hope and comfort. That is my prayer.

I have felt so loved and supported by all of our friends and family who continually help out with the diapers. There's no way I could do it without you all!!! With just our little group, we have donated 1350 diapers to various local hospitals, organizations, and NILMDTS photographers. And we have another 500+ in the works.

And my favorite charities/organizations are Teeny Tears and NILMDTS. So it all works out pretty well.

Capture Your Grief: Days 17 & 18

Eek, I keep getting a little behind on this project, but here are a few catch up days. 

Day 17. Anniversary/Birthday/Due Dates Share a photo of what you did for your baby/ies/child/rens special day. Did you hide away in bed? Did you have a cake? Did you have a party? What did you do?

 

 For the boys' first birthday, we took balloons and cupcakes to Carter's grave. I read two letters that I had written to the boys and then we let some balloons go. You can read more about it here.

Day 18. Your Family Portrait Take a photo of you with your family, work out a way to incorporate your baby/ies/child/ren who are no longer physically with you anymore. You could hold up photos of them or even just hold their names with you. What does your family look like now? Is it just you left here? Do you have a large family? Is it just you and your partner?

Sadly, this is probably our last whole "family" picture. We went to Maui in March 2011, I was almost 4 months pregnant. In a way it makes me sad to look back at these pictures. We had no idea that in 10 weeks our boys would be born.

 One of my greatest regrets has always been that we never got to get a picture of our boys together. We have pictures of us with Carter and us with Cohen, but none of our boys together. But I am so thankful for the pictures that we do have of this little part of our family.

The Appointments

Cohen had his big appointment at the high risk infant follow up clinic yesterday. It's a combination of tests to see where he's at. I have to admit, I left feeling a little discouraged. I knew we were going to be in for a long day just with the appointments, but to add in the combination of Cohen's tornado-like habits when he gets overwhelmed...oh boy. I didn't take any pictures, except one in the car, because I was trying to keep him from wreaking havoc on the place.

First up was his meeting with the psychologist. Yep, my one year old has already had his first psychological evaluation. I sat with Cohen on my lap at a little table while the psychologist sat across from us with a booklet in front of her that she was scoring Cohen on what he did and didn't do. I was supposed to sit there with him and not interact with him. So, there we sat as numerous toys came in and out of the drawer. Could he find the toy under the washcloth? Turn the pages of a book? Bang two blocks together? Put the blocks in the cup? Does he say words? Does he walk? Does he point to things when you say the word?

I have to admit, it was all a little overwhelming. I didn't anticipate responding that way, but it is what it is. Here I sat with my 16 month old miracle while he was being judged for where he was at. I know, I probably took it a little personally, but it was just so hard to sit there and watch him being scored for the things he "should" be doing. And it felt like they were focusing mostly on the things he couldn't do. Um, hello? There wasn't any guarantee that he would be sitting here today! Can't he get a million points for overcoming infections, intubations, heart problems, kidney problems, skin problems, and massive lung problems?


I had to keep reminding myself that while the psychologist seemed fairly indifferent to the whole process, I knew what Cohen had overcome. It's kind of like that day that I sat in the NICU wondering if Cohen would ever come off the ventilator. He still seemed so sick. And then one of his doctors came in and told me to think back to a week ago and a month ago and to see the progress that he had made. While the changes seemed small, each one added up to a lot of change and a lot of progress. It was easy for me to get caught up in the moment and want big, huge improvements. But, as parents of preemies know, preemies have minds of their own. I know with Cohen, he does what he wants, when he wants. In his own time. And I know that's how it's going to be with everything else too. Who cares if he doesn't bang two blocks together? We know how far he's come. Plus, what baby has an "evil plan" cackle and a fake laugh that will make anyone (besides psychologists) smile? I would give him a few extra points just for that. And for being able to open the front door and crawl out. And for being able to chase down his cat and poke his eyes.

Cohen is at an 11-13 month level (he is 13 months adjusted). His hearing is perfect and he gave two residents a run for their money when they tried to do a physical exam on him. He also entertained several doctors sitting on the other side of the double mirror that he insisted on licking (ew), banging on, and playing peekaboo with himself.

Cohen also had an appointment with his regular pediatrician earlier this week and he has broken the 20 lb mark!! He's also in the 60th percentile for height, on a non-adjusted chart!! 

All I know is that today I was reminded that I am proud of Cohen no matter what those charts say. We are so thankful to have him in our lives and we are happy with whatever he does, when he decides to do it.

The Blur

In case you were wondering why there haven't been many pictures of Cohen lately, it's not because I haven't taken any, it's because most of them look like this: (these are all from my phone so that doesn't help either). See the blurriness in all the pictures? It's because he never.stops.moving.

{This is cute even though it's blurry!}

But every once in awhile, after I take 10,000 other pictures, I will get one good one. It hasn't happened yet, but I'll let you know if it does.