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The following article was posted on May 9th, 2013, in the New Times - Volume 27, Issue 41 [ Submit a Story ]
The following articles were printed from New Times [newtimesslo.com] - Volume 27, Issue 41

Bloggin' Mama

Three brave, local moms document the trials, and triumphs, of motherhood


Ashley Marie
PHOTO COURTESY OF ASHLEY MARIE

Mom: Ashley Marie

Blog: A Fox and a Wolf

Link: afoxandawolf.blogspot.com

Children: Bry (11), Oliver (1)

Partner: Richard Fusillo

 

Thursday, April 19, 2012

oliver shai

born at 9:06 a.m.

7.1lbs 19.5 inches long

and simply perfect

 

 

Friday, Aug. 24, 2012

National breast-feeding awareness month

A local doula and president of the Birth & Baby Resource Network created an event to get moms, dads, and kids out in the public for a public display of breast-feeding. As you may know, I am a nursing mom and back nursing exclusively one hundred percent. So I joined the event to help educate people on the benefits of breast feeding—and I did that by nursing {without any sort of cover} publicly. Myself, the doula, and several ladies {dads and kids too!} stood in front of our local Victoria’s Secret during farmer’s market tonight holding signs and nursing our babies out in the open. We got some looks, a few whispers from passerbys, but most importantly we had a ton of support. People would walk by and say things like “thank you!” and “way to go!,” cheering us on and striking up conversations with us. Some, who had no idea what was going on, even stopped and read our signs and left with knowledge. It was a great turn-out!

 

Saturday, Jan. 12, 2013

hey, that's your opinion

I am so sick and tired of other moms telling me how to raise my kids. Look, you labored your precious little bean and popped them out all on your own and I labored mine and popped mine out on my own. Therefore we each have our own right to raise our own kids.

We cloth diaper. Used to be full time, but now it’s not at all cause the house is a disaster and I don’t want to add another load of laundry on top of all that I already have to do anyway. But usually it’s full time. Except at night. But some of my mommy friends feel that they need to tell me that cloth diapering is best for baby and do I know how many chemicals there are in disposables and blah blah blah. Yes, I know. But look—what may work for you doesn’t work for me.

We give our baby organic puree pouches. Oh my god, call the presses! She doesn’t use table foods. Actually, we do that too, thank you. I’m sorry, but I don’t eat super plain, safe for baby’s tummy foods all the time so we give him purees. By the way, he doesn’t want real food half the time. Oh no! Do you think he is going to be too small? >gasp!< You don’t know how much flack I get for feeding my baby organic puree food from a pouch. Look, if I can pronounce the ingredients and there are less than 5, I’m good. And if it’s organic, I’m even better. Besides, my baby will let me know when he is ready for food—table or from a pouch.

We co-sleep. Oh no, I’m going to have an insecure mama’s boy. Puhhlease! I co-slept with my daughter for almost 4 years! She’s 11 now and half the time she can’t get rid of me enough. And just to let you know, we do put him in his crib the first part of the night anyway now. Well how horrible of you to not want to sleep with your baby! Goodness gracious mamas, make up your damn minds! My baby is not going to be insecure and have separation problems because he slept in bed with me for a couple years. And he isn’t going to feel abandoned and lonely if I put him to bed in his own crib each night, either.

We practice attachment parenting, but you let your baby cry himself to sleep? Uhhhh, yes. I run an etsy business and until I can figure out how to cut, sew, finish, and package with no arms then I’ll let him sleep in my arms all damn day long. But don’t get me wrong—we get a lot of snuggle time, play time, baby-wearing time in. I just don’t have all the time in the day to not let him cry himself to sleep {which is only in like 3 minutes most times anyway}.

Yes, these are all things I have heard from friends who have told me that what I am doing is wrong, not right, ruining my child’s life.

Parenting is about giving your children the best life that you can with what you have and know and loving them with your whole being. It’s not about that organic cotton swaddle blanket or all-natural organic fruit snack or the amount of time you “wear” him through out the day. And I know that just because I didn’t give him the Hyland’s brand whatever doesn’t mean he is going to grow up screwed up.

 

Friday, Jan. 18, 2013

being 'present'

As a mother of a tween and a baby it is necessary to multi-task. Juggling doing the dishes while checking sister’s homework and nursing the baby has become the routine in this house.

But recently I have taken a step back and analyzed what I’m missing out when I’m multi-tasking. Sadly, it is a lot. Though many things are being accomplished {dishes, homework, blogging, tweeting, nursing, etc} I’m not actually “present.” It seems as though the attention my children and husband should get from me throughout the day has dwindled down to just physically being here. But mentally they need me too!

So with this new year I am going to make it a point to approach each task singly. When I do the dishes, I do the dishes and that’s it. When I’m helping Bry with her homework, I am going to just help her with her homework {not blog, text, IG, etc. at the same time}, when I am nursing baby I am going to make it a point to just nurse him, in his nursery, without distractions. Same with Bry! When we hang out and watch a movie, I am putting down the phone and lap top and we are going to snuggle, gosh darn it! The multi-tasking will be cut way down and I am going to enjoy my kids, my family, and life!


Bry and Oliver
PHOTO COURTESY OF ASHLEY MARIE

 

Friday, Feb. 1, 2013

mama problems

Hello there! I am trying to enjoy the last few moments of “relaxation” before the wolf comes back with the baby. Though Bry is here and she is driving me up the damn wall. Bry is super sensitive and I can never tell if she is being emotional and pissy because she has raging hormones or if something happened to her that day that is setting her off. I am not sure if I can survive much longer with a tween and an infant. I might die of stress. I have been a ticking time bomb for about a week now and have cried at the drop of a hat.

I seriously feel as though I am going to explode. I NEED A BREAK! Last night, when baby was just digging in to my every nerve and emotion and I had said out loud that I was “done nursing,” I almost woke Bry up, bundled the kids up, and walked to the grocery store so I could buy some damn formula. Then today as we were making our rounds through the baby department in target I stopped in the food aisle and just stared at all the wonderful, helpful, amazing, ready formula. oh sure, my boobs already make ready, precious milk; but when I have a damn baby attached to them all of the time making a bottle at 3 a.m. doesn't sound so bad. I even texted one of my friends {who tried to nurse, but couldn't and ended up using formula} to ask for advice at 1 in the morning! I felt terrible and she didn't reply because, well, it’s 1 a.m. and no one in their right mind would be up replying to someone who is searching for answers on how to stop breastfeeding at that time! They'd be sleeping! See, I'm a mess. I really don't want to quit nursing, but every mama has been here, right? Teething, needy baby who is on your boob all the damn time ... it's enough to consider quitting before the one year mark {or even before the 8 month mark} and just give the baby formula.

Except wouldn't yah know? The day AFTER I cowardly declare I am done nursing and am so entirely stressed out because the kid just does not want to eat anything else ... he ends up eating a breakfast, snack, lunch, snack and only nursed ONCE today so far.

 

Friday, Feb. 15, 2013

my first real valentine's day

I came across a quote on Instagram the day before that really hit home for me: “create a life that feels good on the inside—not one that looks good on the outside.”

I'll be honest; the wolf and I have been struggling even before baby came along. The life you see in photos or in what I write, though true, look a lot happier than they really are. Without airing my dirty laundry, it has been rough and at times I've thought “we will not get through this.” But when I read that quote I began to wonder, why? Is it that much of a burden to just try? I know part of me had given up. Mostly because I don't have time between the feedings and the diapers and the play dates and birthday parties and homework ... .

So that quote meant a lot to me because I want to stop making it look like we are happy and to start feeling happy. So I got together last minute some gifts for Richard that would help us in the journey of putting some meaning behind all of those “i love you's” and kisses and to just be happy darn it.

 

Thursday, March 28, 2013

mother daughter day

When we started trying for a baby, we made sure to talk to Bry about it. We didn't have to actually, because it was all she ever talked about when the wolf and I met. “Can I have a baby brother or sister?” “When are you guys going to give me a brother or sister?” It was like that all the time. But still, we wanted to make sure she understood what it would be like to have a baby in the house. One of the biggest worries I had was that she would feel left out. I know that I would never let that happen, but I can't avoid how she would feel anyway.

One of the ways we had planned to avoid the “left out” feeling was to dedicate a day each week to only her.

The beginning of this month we had a big mother daughter day. It was so amazing to dedicate my time to only her and go out and do girly things.

We had so much fun! We laughed and talked and she even shared a secret with me about a boy! Since we had so much fun, I thought this would be perfect to schedule in to my month; a mother daughter day. The next one will be the first weekend in April and we plan on going [OMG I can't believe this!] bra shopping. Victoria's Secret, here we come ...

 

Friday, April 19, 2013

a year

About this time, one year ago today, I was lying in the hospital bed snuggling and possibly nursing sweet little newborn Oliver and falling even more in love with this tiny person every second. This past year has been amazing and emotional and trying and has been the best year of my life thus far. Becoming a mom of a newborn again was a challenge, but it's one of the most rewarding challenges I've ever had.

I am just truly so blessed with Oliver and can not express how amazing it is to see my children grow and the differences and similarities they have. I absolutely love, love, love being a mother.

Happy one year birthday Oliver! I love you!

 

 


Sara and Liam
PHOTOS COURTESY OF SARA MCGRATH

Mom: Sara McGrath

Blog: Life with Lupe and Liam

E-mail: upcycleslo@gmail.com (for link)

Children: Lupe (4 or 5), Liam (1)

Partner: Pedro Arias Lopez

 

Wednesday, July 13, 2011

Why write a blog?

It is 7 a.m. I should be resting for another hour before I get up at 8 to take a shower, get my breast milk out of the fridge and head to the hospital. But I'm in bed, next to my trusty breast pump, listening to the neighborhood wake up and starting this blog.

I am writing it with two purposes in mind. Three actually. To help me process all that is going on in la vida de Liam. To update friends and families (gracias a Dios we have such a wide circle, how blessed we are) because honestly it is exhausting to update everyone one by one. And perhaps at some point to share with other parents who are adjusting to having a baby in the NICU, who have an older daughter who is dealing amazingly well with not being able to meet her baby brother, or who are adjusting and coming to terms with and accepting the idea that they have a baby with Down Syndrome.I see a perfect little human being when I look at my son (how strange to say "my son!"). I have had to throw all my preconceived notions and expectations out the door and realize that whatever we have to do to just get him home is what needs to happen.

Here is a picture of Liam before he went up to the NICU. Before all pictures include tubes for oxygen in his nose, monitoring tubes connected to torso and feet. The precious moments after my life transforming vbac birth. After Lupe's cesarean birth, to have a vaginal birth was the culmination of all my dreams. It was something so sacred and profound, primal and spiritual. Perhaps only moms can understand this. It is hard to describe the feeling of his body slipping out of me in a rush after the intensity of pushing. A dream come true. Thank you to my mom and Pedro for being there and to my oh so special doula Megan for being the support I needed.

 

Monday, Aug. 29, 2011

mom envy

Like to cook, bake, garden, sew. My baby wears cloth diapers, we compost, cultivate an organic vegetable garden, homeschool, and my house looks great in pictures. There are a lot of blogs out there written by these super moms. I like this creative, green lifestyle. Sometimes I suffer from mom envy though. I really wish gardening worked out for me. I want to make my own laundry detergent and shampoo and bake bread, and have the kids participating in all of these learning activities.

But we all do what we can and have to be ok with that. I do manage to use cloth diapers. I buy veggies at Farmers Market and almost always use cloth bags.

This morning I made zucchini carrot chocolate muffins. Turned out well, except the clumps of baking powder that didn't mix. And I made eggs with potatoes and spinach. I used a cast iron skillet cause that's the good way to cook, right? Halfway through I switched it to teflon cause the eggs were sticking. So I include a couple photos here, to show the reality of being a mom. The dirty dishes, clumpy muffins, etc.

Though, I did get these things done before noon and without a crying baby, so hey, points for me!


Lupe

 

Saturday, Sept. 24, 2011

Letter to Liam at almost 3 months old

My sweet baby Liam,

Time will go by fast and you will grow and change before we know it dear Liam, cliched but true. You will be my last baby and I want to remember everything. You are almost 3 months old (in 10 days), end of the "fourth trimester" as it is sometimes called. A regular baby—not a newborn. I want to remember how you grab onto my shirt when I hold or nurse you. And how now you are starting to grab onto your own shirt too. Your smiles are becoming slightly more frequent and the other day you smiled and then simply, gazed up at me in awe as if saying, "Oh mom, it's you!"

And of course there is all your grunting and growling. Lupe now repeats me all the time saying, "Liam is a noisy baby.” Speaking of growling, and of Lupe. This morning around 6 I had nursed you and put you down in bed and you were snorting, wheezing, growling, like you do, and Lupe popped up out of her bed and said, "It's Ok Liam.” She really loves you.

You chose a special family to be born into mi amor, nuestro padre celestial ... You are surrounded by love.

I love you.



Lupe and Liam

 

Friday, March 16, 2012

overwhelmed ("Love what is ahead ...")

            I'm going to say it. I'm terrified. I am so scared that I am not going to find the motivation and energy to do ALL the things I want to do with Liam. Especially with Liam, but Lupe too. I am reading, reading. One awesome DS blog leads to another and I am getting overwhelmed with all the theories and ideas and therapies, etc. I have the urge to sob and I haven't had that feeling in a while, since this was all still new.

            I am reading the books by Glenn Doman. My dad is going to help build a crawling track. I need new sensory stimulation every day for Liam. All issues he has or will have start in the brain, so we need to STIMULATE that brain as much as possible—tactile, visual, auditory. It is pliable and can grow and expand. And Liam WILL have a full life. He has the POTENTIAL to do anything. He needs our support.

 

Monday, July 16, 2012

Reflections on Liam's First Birthday

Liam is napping and Lupe is with Grandma.

What I wanted to reflect on is his first birthday. First off, THANK YOU to those who came to the fiesta or were here in spirit. (I don't even want to remember reading an online Facebook forum and a mom saying how her ds child was never invited to parties—and wondering if that is why I invited so many to Liam's party and how I want him to have friends, but then our TRUE friends will always love us and invite us over and our true friends will educate their children about kids with special needs or maybe they won't even have to. They will just know that they love Liam ... oh boy, here i go, digressing ... back to the party.

One year old. I'll never have a newborn again. My little guy will now quickly turn into a little boy. This first birthday was very emotional as those of you who are parents can understand. Liam was born 6 hours after leaving Circus Vargas at intermission on July 3, 2011. So we went to the circus again and I just know it will be a tradition now. The party: bounce house, cupcakes, good friends and family. Pretty standard, yet pretty special. We were surrounded by our ever growing circle, our community. Liam didn't cry or fall asleep, not bad for a one year old’s birthday!

It hit me, with him turning one that he isn't crawling yet. Most other one year olds have crawled a while and are learning to walk. I am grateful he is mobile. That he has started to explore the house, scooting from one room to the next, following his sister.

But what I most wish for as I reflect on Liam's first year, is that you take the time to read what I write here and let me know you have read it. Isn't that what anyone ever wants really? To know that they are being heard?

 

Wednesday, Aug. 29, 2012

Dear Maestra,

Dear Maestra,

Today we took Lupe to meet you and do the paperwork for the preschool. And ... she can't stop talking about the school. When we got in the car she said, "I like the maestra Mama, she's fancy. Do you like her?" And when we got home, you entered into her pretend play. Lupe does this all the time, whatever situation we've just had or people we've just been with, she comes home and decides who she is, who I am supposed to be, and then fills the rest of the parts with her babies and animals.

So, finally, Lupe is pretending that she can be a mommy and something else. Every once in a while someone asks her what she might want to do when she is a grown up—“A mommy, that's all.” No, she can't be anything else at the same time. This is very real to her. You may think that a lot of little girls are like that, but let me tell you, Lupe is REALLY into babies. She can tell you about the day her baby was born, explain her breastfeeding problems and triumphs. I mean this girl could be a student doula or lactation consultant at age 4. She is now going to be a teacher.

And here I was wondering if she would have a hard time starting the third preschool in one year. She went to one at the high school near our house and cried the first few days but ended up loving it. I thought it would be hard to tell her why she wasn't going back there. "Mom, am I going to Pacheco tomorrow? I just can't wait to start. I love that school!" That is what she said to me suddenly in bed after I thought she was already sleeping.

And I felt a good connection with you too Maestra. I think this is going to be a fabulous year. I write you this letter because you're going to spend a lot of time with m'ija. She's really special. And I know you can already see that. Gracias. Todo pasa por una razon (bien que sabe Usted eso!) y se que tenemos a nuestra hija en el mejor lugar. I had such mixed feelings about her being at school 5 days a week, but I'm feeling a little better about it after today. I will do Liam's therapy at home con ganas, knowing that Lupe is in a supportive and inspiring environment. (Your dad was the first to work with Down Syndrome kids in Kuala Lumpur? Seriously? Amazing). So, thank you in advance for ... todo!

Con carino,

la Mama de Lupe

 

Friday, Sept. 7, 2012

Art after dark

We went downtown tonight after dinner and were at a store looking at kids art and a woman was studying Liam for a minute. Then she said, "He's very cute. I used to work with special ed.” And it was an interesting moment. It made me think: was it necessary to even mention that? But then I said, "Oh thanks! Yeah, he has Downs." And then I wondered, was it necessary to say that?

It's the first time a stranger in public has brought it up. Earlier today I was thinking about how we're starting Parent Participation next week and wondering if I will mention T21 from the get-go so people aren't wondering. I was thinking of even saying that the other parents could feel free to ask me questions. I myself didn't know anyone with DS until Liam was born.

 

Monday, Oct. 15, 2012

4 going on 14

I don't know if it's just being four or the influence of school but my sweet little girl has been replaced by a teenager, with attitude. She is talking back to me, throwing tantrums, making ugly faces, and on top of all that, doing new things like preening in front of the mirror.

It is so hard to watch! I suppose I should be glad that she feels comfortable enough with me, her mom, to talk about her emotions a little bit and to tell me when she is angry at me.

And may I just ask why is it that kids so often are dying to be friends with the one person who isn't very nice to them and doesn't want to be friends back?

God give me wisdom and patience here!

 

Thursday, Nov. 1, 2012

Time to celebrate

I have been looking forward to writing this post for a long, long time. Something big, I mean huge, happened in our house last Saturday, October 27. Some of you may or may not know the importance of crawling for brain development. It has been our primary goal for several months now. Liam has been scooting on his belly for quite some time. But he tends to pull himself with his arms and let his legs just kind of drag behind. So we have been doing assisted crawling and cross patterning with him every day. Sometimes this means just having him on his belly and with two people moving his arms and legs in a cross pattern. Sometimes we do that and have him moving forward on the floor to get to a goal. We also have him on hands and knees with two people helping him crawl that way. Or doing sit and stand exercises to help strengthen his legs as well as tactile stimulation and deep pressure massage on his limbs. Pedro and I could not have done all this without the enormous help of Liam's grandpa next door.

So last Saturday, at almost 16 months right before bed, LIAM STARTED TO CRAWL!!!!!!!!!!!!!!!

Excuse my excessive use of apostrophe marks but this is such good news and we just can't explain how excited we are!!!!

 

Sunday, Feb. 3, 2013

Satisfecha, aquí y ahora

I'm making a decision. A decision to be not just content, but happy (dare I say ecstatic?) about what my life is like right now. We have been using up a lot of energy thinking about buying a house and how hard it is to do that in the town I grew up in, where my parents live. (Plus, wondering if I am doing enough for Liam—getting our neurodelopement program done, balancing home visits with therapists, finding alternative methods, remedies, trying to research supplements. And the list goes on.)

Their truth is, we have a lot to be happy about. We frickin’ live downtown! We walk to the library, to the cafe, to my parents’ house. We sit on the front step and watch the world go by. Although it is hard to park, friends do stop by, cause we are centrally located. Pedro walks to work, and has for five years. Our landlord is very fair, we are not paying an arm and a leg for rent. He's a good guy. We have a big backyard, we just need to put some work into it. If we continue to live here, the kids will walk to high school. Their friends will come over and we won’t be always driving them places. Sometimes the house feels cluttered, and we certainly need to get rid of some stuff, but it is also cozy and creative and comfortable. It is home.

 

 


Jamie and Rhone
PHOTO COURTESY JAMIE MARAVIGLIA-MANALO

Mom: Jamie Maraviglia-Manalo

Blog: Notes of Naya

Link: notesofnaya.blogspot.com

Children: Ty (11), Naya (July 24, 2011-Sept. 14, 2011), Rhone (8 months)

Partner: Daniel Manalo

 

Saturday, Aug. 20, 2011

First post—should have done this a while ago.

Naya was born on July 24. She was a beautiful 7 lb., seemingly healthy baby. Dan and I fell in love immediately. The only thing that felt a little off was that she began having some feeding problems in the hospital and didn't poop for the first couple days. They told us not to worry about it and released us on the 25th. We went home and started to get used to our new life. Unfortunately, Naya was still not eating or pooping. We took her to the pediatrician on July 26 and they gave her a suppository and told us to follow up with a lactation consultant about the eating problems. I told them it didn't seem to be a breast-feeding specific issue—Naya wasn't interested in eating at all—but we made the appointment anyway. We saw the lactation consultant on July 27; she also found it odd that Naya had no interest in eating and encouraged us to go back to the pediatrician the next day. I should mention that during this time period, we were having to force feed Naya with a syringe and she was spitting most of it up. We took her back to the pediatrician on the 28th and they told us to increase feedings to every two hours, which we did to no avail. After she forcefully threw up every feeding that night, we had enough and took her to the Emergency Room.After running some tests and taking an x-ray, the ER thought she had a bowel obstruction and set-up a transfer to Santa Barbara, where a pediatric surgeon was on staff. That's when she started vomiting up bile and, we believe, aspirated some of it into her lungs. After stabilizing her, we got on an ambulance and were rushed town to SB. When we got to the hospital, they had a hard time stabilizing her in the ER and rushed her to their PICU. The rest of that day was kind of a daze but they intubated her, put her on medicine for her blood pressure, performed exploratory surgery, and started her on antibiotics in case she had an infection. I didn't realize how close we were to losing her that day. Turns out, she was in septic shock and had pneumonia.

On August 8, after a particularly bad night in Santa Barbara, they decided to transfer Naya to a higher level hospital and airlifted her to Children's Hospital in LA where she remains. Yesterday was an awful day and we were sure we were going to lose her. Somehow my little miracle fought through.

 

Monday, August 29, 2011

Loop de Loop

Today's ride was much less a standard roller coaster and much more a loop de loop. Started off okay but she had some blood pressure issues overnight that caused her pressers to be raised to the maximum levels again. Her cycles are so damn frustrating. She has pretty good days so they start lowering the meds because her pressures are too high, she sustains them for awhile and then crashes at about 3 a.m. Every. Single. Day. That is why we hate walking in here in the morning. It is so discouraging.

When we got in this morning, we were greeted with the news that they believed she had a leak in her right lung (pneumothorax) that might need to be fixed with a chest tube. However, with the state of her edema and her overall fragility, putting in a chest tube might be too dangerous. Our choice was to put in the tube and give her a chance or let things be and be prepared to let her go. This is an extremely hard decision that I really didn't believe I would ever have to face. After multiple x-rays showing that it was getting worse, Dan and I decided to have the chest tube put in despite the immediate risk. We spent the afternoon taking turns singing and talking to her while stroking her head and holding her hand.

When the doctor (finally) arrived, we kissed her and told her how much we loved her and left the room to wait. I can't even describe how horrible this feeling is, even though we have had to do it multiple times already. I never, ever thought I would be faced with so many life-or-death decisions, in such a short period of time. It puts so many trivial things in perspective. Like I said yesterday, we are truly changed forever. The chest tube took 15 minutes to put in and she did beautifully. Her stats immediately shot through the roof! She is so amazing. We are so proud to be her parents. I can't believe that a 36-day-old has taught me so much about strength and perseverance. Her will and fight to live completely baffle me. She wants to come home to us and keeps fighting to do so. I only can hope and pray that it will be sometime soon.

 

Thursday, Sept. 8, 2011

Do Not Go Gentle Into That Good Night

 


PHOTO COURTESY JAMIE MARAVIGLIA-MANALO

I have to be brutally honest now. Naya’s situation is not looking good. Every night, I say the same thing to her. I tell her "Do not go gentle into that good night. Rage, rage against the dying of the light."

 

Tuesday, Sept. 13, 2011

Elephants

This is a hard one to write. Naya has had a pretty terrible day. Her lungs are just so bad. That's really it. They are bad. Horrible. Probably unfixable. It pains me to even type that. I know that we have really tried to stay positive during this whole thing and are still trying but it's hard to do so when that giant elephant in the room keeps punching you in the face. Her lungs are just not healing themselves. She developed another pneumothoryx today. She already has two chest tubes and we are not going to stick another one in her. Therefore, we need to hope and pray that one of these two chest tubes can find the air that is stuck in her chest and get it out. It's sort of working right now but for how long? How much more of this can her poor little body take? How can it possibly break out of this nasty, vicious cycle? I want to believe that she can. That her will to survive will be able to persevere. But it's hard in light of all the concrete evidence. That nasty elephant in the room keeps sticking its fat ass in our faces. I have to force my fingers to type this but I honestly don't know if she is going to make it through the night. I want her to. I would give anything to switch places with her right now. Let her live a life that doesn't involve tubes and ventilators and drugs, even for a second. But I can't—that's the reality. I can't do anything. I can sit her and watch her sats go up or down and try to will them to move in the direction I want but that's it. I can watch while our wonderful nurses try to position my baby in a way that might save her life but I can't even help them. I can't hold her. I can't even cry because I'm so exhausted and emotionally drained. I can't do anything but pray that I'm not sitting here, watching her die.

 

Wednesday, Sept. 14, 2011

i carry your heart with me

by ee cummings 

 

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

                                                            i fear

no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

 

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

 

i carry your heart(i carry it in my heart)

 

In loving memory of Naya Jane Manalo. July 24, 2011-September 14, 2011

 

Saturday, September 17, 2011

It's strange being home. The moment we walked in the door on Thursday was terrible. It almost made me wish that I had never been able to bring her home. All of those memories are here and came flooding back to me. Luckily, family and friends had cleaned up around our house and put all of Naya's things into her room and shut the door. I haven't brought myself to go in there yet. I walk by her room and can't help but cry. It's too painful. Ty asked me last night if it was okay if he went in there and read her stories from her bookshelf. I told him that if it makes him feel better, he's more than welcome but I can't go in there. I will go in there someday. I want to sit in her chair and rock and cry. Just not yet.

I've spent most of my days so far lying on my bed. That is also painful, as Naya spent most of her short time with us in our room, on our bed or in her bassinet. Sometimes I feel her there. It makes me cry, picturing her, lying on my chest sleeping. I know now that the ecoli was probably cursing through her bloodstream, while I was laying there clueless. All I can do is hope that she wasn't in too much pain. I keep going over everything in my mind and wishing I had handled things differently. I wish I had acted on my gut instinct that something was wrong. Don't judge me for this but we got a bill from the pediatrician's office today. I opened it, ripped off the bill form and wrote "please stuff this up your ass. Thanks! :)" and put it in the mail. I know it was childish but, sadly, it helped. It was a good direction of my anger and grief for the time being. So are bloody marys.

 

Wednesday, Nov. 30, 2011

Shame

As women, we spend our whole lives knowing that our bodies can produce babies. Many of us want to. We hear our biological clocks ticking and start feeling those motherly urges to bring a baby into this world. When we lose this baby that we worked so hard to create, we feel that our bodies have failed us. We feel that there is something wrong with us because our body wasn’t able to produce a healthy baby. And because of this failure, we feel dirty, we feel broken, we feel like less of a woman. We feel ashamed so we don't talk about it.

The strange thing is, when you lose a baby, people start coming out of the woodwork and telling you about their own tales of loss. I can't even begin to tell you how many stories about infant loss I've heard in the last few months. I think this happens because when a woman experiences this sort of loss, they feel more comfortable telling their story to someone who has gone through something similar because they know they won't judge them. They lose that sense of shame because they know the other person will understand. I know I feel like that. I hate running into people that don't know what happened but knew I was pregnant and they ask about the baby. I can't help but think that underneath their genuine sorrow for me, there is a smidgen of judgment. That just for a moment, they are thinking that somehow I did something that caused this to happen, because whose baby dies? And even if they aren't thinking that, I'm still worrying about them thinking it. Hell, I still think it about it myself. I know that everything that happened was out of my control but I still feel like I failed at my responsibility as a woman and a mother.

And that leads me to my goal. I want to help get rid of the shame that surrounds pregnancy and infant loss. It's unnecessary and completely unhealthy, especially since 25% of women go through it. If all of us women who have lost a baby could speak out and not be ashamed, maybe some of the stigma could go away and make the loss a tiny bit easier for all of us. Because, unfortunately infant loss happens. I am not the first to experience this and I am definitely not going to be the last.

 

Saturday, March 31, 2012

A Rainbow

Okay. It's time.

I've been holding something back for a while from everyone. I have had my reasons (which I will probably go into in subsequent posts) but I want to keep this one upbeat and happy. I am 17 weeks pregnant right now with our rainbow.

I know I have a lot of baby loss mommas that follow me but for those of you that aren't familiar, here is my favorite definition of a rainbow baby:

Babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. A "Rainbow Baby" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy, and hope.

I think this definition perfectly illustrates what we are feeling right now. At this point, we are very, very cautiously excited. So far, everything looks great.

It's very difficult to be incredibly sad and incredibly happy at the same time. The emotions do not cancel each other out but exist simultaneously. I do have to say, that this baby will NEVER replace my daughter. I will always ache for her and what could have been. Our family may be growing but it will always have a big part that is missing. But this baby has been able to help me heal in a way that nothing else could. Like a physical rainbow, it has given me a small ray of light and a glimpse of hope among the darkness.

 

Wednesday, July 25, 2012

First Birthday

Yesterday was Naya's first birthday. Sometimes, I think the lead-up to a significant day is worse than the actual day. I've spent the last few weeks shuffling between being extremely anxious, irritable, and emotional—all because I knew her birthday was coming soon and I was afraid. Afraid of the emotions that were going to surface. Afraid that I wasn't going to do enough to honor her. Afraid that I wasn't going to be strong enough to make it through the day. I did but it wasn't easy.

The panic started on Monday evening. I went into labor with Naya around 10 p.m. on July 23; I tried to force myself to go to bed before then so I would be asleep when that time hit.

I didn't fall asleep though. I sat there and pictured myself feeling those contractions that I felt a year ago. I pictured my water breaking like it did as I laid in the same spot and how excited Dan and I were. I remembered how my contractions quickly accelerated and Dan rushing to get our stuff together and dropping Ty and the dog over at a neighbor's house. I could feel those contractions I was having as he raced to the hospital and lied to me about how close together they were coming. And I cried. I cried because at that point a year ago, I was so excited for the change that was about to happen. And I was so incredibly naive.

I gave birth to Naya at 7:10 a.m. At 6:30, one year ago, I was getting ready to start pushing. Dan woke up to me shaking and sobbing and we held each other and cried. At around 7, we went outside and sat by our hummingbird garden, holding each other and crying as we waited for her birth minute to pass while two hummingbirds started their early morning feeds.


Jamie

 

Tuesday, September 11, 2012

Rhone

On September 5 at 1:52 a.m., I gave birth to a beautiful 7 lb. 9 oz. baby boy. His name is Rhone Nayin Manalo and he is absolutely perfect. Rhone means "that which runs" or river, and Nayin is pronounced like Nigh in and means Bright Eyes in Indian. (It's also an obvious homage to Naya.) He's very healthy. He's eating and pooping and doing everything normal newborns should do. He actually pooped within the first 6 hours or so after birth. A nurse was in the room with us when we opened that first poopy diaper and started crying with us. She told us that she had never seen parents cry over the first poop before and it was touching.

My grief feels like it has changed a bit as well—it's still there, still intense but not constant. Perhaps I am just distracted with Rhone and the work and happiness he has brought or maybe it's because it's almost been a year since Naya died but I do feel a change of some sort. I am feeling somewhat happy and excited about life again. I never thought I would be able to say that.

 

Friday, October 5, 2012

One Month

 Having a rainbow baby can be described in many terms. It is beautiful, it is heart-warming, it is joyful, it is life-saving but most of all, it is bittersweet. Oh, just so bittersweet.

Today, Rhone is one month old. I can't believe it's already been a month since he was born. A month since my world started to light up again. I am completely in love with him. I love watching every moment of his day. I don't want to put him down or take my eyes off him.

There are times when I am sitting here, rocking my beautiful baby after he has finished his meal and my mind starts to wander. I think about how much I love him, how much I enjoy holding him and how I never want to let him go. Then I think about how I have had to let one of these beautiful babies go—I had to do the unthinkable. I know it's weird because this IS my reality, but I can't not physically comprehend how I was able to let Naya go. How I was able to live through her death with my sanity (mostly) intact? Just thinking about the pain of ever losing Rhone is excruciating. How the hell did I ever survive the loss of my daughter?

And then I have to stop and go back to living in the moment and enjoying my son. My rainbow. A little boy that has saved my life and helps me go on. Someone that lets me catch a glimpse of what I lost—a gift that is so beautiful yet so painful. So bittersweet.

Happy one-month birthday little man.

 

Tuesday, April 16, 2013

Today

            Today I went to your grave to talk to you baby. I told you about your brothers and your daddy. I cried as I described how much I have been hurting lately. How my fears about the future are destroying me. I laid down on the grass to get closer to you. I wish I could have felt you there. I wish I could feel you anywhere. There are days when I feel like I am okay but there are others where the pain is so raw, I feel like I did at the beginning of this nightmare. I am never going to stop yearning for you. Sometimes, it is too much. I miss you. I love you. I want you here. ∆

 

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