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    Our Journey With Special Needs

    I feel as though my experience as a mother has been somewhat unique (at least I don’t meet many people in my circumstance). I had a fairly typical pregnancy. I had one pregnancy loss, but my doctor said that what I went through was fairly common, and I should have no reason not to try again. Even with the encouragement I was super nervous.
    I was finally feeling like I was in the homestretch of my pregnancy, and that everything was going smoothly, but around 36 weeks I started to feel a strange pulsating sensation in my lower back. It was not super painful, but it was uncomfortable, and I had a very bad feeling about it, so we decided to get it checked out at the hospital. As we were pulling in the driveway I felt a flush of fluid run down my leg. I thought that my water had broken, and started to get a little excited actually. I assumed I was just going into labor, and was nervous, but so excited to finally meet my little girl. I looked down, and the car was covered in blood. I had passed a blood clot to the placenta that caused a full placental abruption.
    We both came very close to losing our lives that night. I was stabilized after two blood, platelet, and plasma transfusions. My daughter was born without a heartbeat or breathing for nearly 20 minutes. After getting her somewhat stabilized she was put on life support, and a cooling blanket that put her in a hypothermic state for 72 hours to allow her brain a chance to rest. Upon coming off her cooling blanket she went into seizures, and there was a big question to if we would ever be bringing her home. She struggled to be weaned off of life support, and we did not even hear her first cry till she was nearly a month old. It was consistently the scariest time of my life. Coming home to an empty nursery every night was devastating.
         
    She eventually was transferred to Children’s NICU for her first surgery for a placement of a gastric feeding tube. She has coordination issues, so feeding in the typical sense is very difficult. She was then given the diagnosis of quad cerebral palsy in addition to original diagnosis of HIE (basically means brain damage caused by oxygen deprivation). I have always been a perfectionist, so having a special needs child is not something I felt like I was capable of handling. But, through this experience I have found people just adapt. Everyone has there own reality, and this is ours. Instead of bouncers and rattles, we have medical equipment and feeding pumps.
       
    As we are heading into the one year mark, her birthday is two days after Christmas, it is bittersweet. I’m so impressed by how far she has come, but it’s hard not being affected by other children reaching so many milestones she has yet to meet. Overall, I’m well aware of how lucky we are, and how much worse things could be, but I’d be lying if I said I’ve completely come to terms with things. I see her struggle so hard to do the most basic of things people take for granted. But, she continues to show progress with all of her therapies. It may be at a pace I’m not accustomed to, but this whole experience has also been a hard lesson in patience. They are not playing when they say inchstones and not milestones.
         
    She now smiles and interacts, has her favorite shows and toys, and her own unique personality. None of this seems like a big deal, but she was almost five months old before she even really made eye contact. I have become so codependent with her throughout all this. I’m so scared to leave her with anyone. I feel like we have been through so much together, that I am really the only one that truly understands her. I know this all sounds terribly depressing, but sometimes I feel like I have to express how far we have come, so people can understand how truly amazing she is. I’m not sure if parents of typical babies love this hard, I’m sure they do, but it’s hard for me to imagine anyone loving anything more than I love this little person.
    -Sarah Hayse, @sarahhaysek

    First Month of Motherhood: My Experience

    Today is a special day. As I sit holding my newborn in my arms I reflect on this motherhood journey and the ups and downs of my first month postpartum. I am a first time momma and I can’t believe it’s been one month today that I brought a beautiful baby girl into this world.

    Each morning I stare at her soft perfect skin and think to myself that she’s a blank canvas full of potential and endless possibilities- so pure and so new. The world is her oyster. I daydream about all the beauty we will show her and all the adventures we will go on as she grows yet on the other hand I want to stop time and keep her in my arms protecting her from any pain and discomfort. The feelings of happiness, fear and joy were so intense that I cried daily. I was overwhelmed by my emotions the first two weeks after giving birth.

    The postpartum journey is bittersweet as I am so in awe of this little human my husband and I have created yet my body and hormones were wreaking havoc on me as well . This can make it hard to the sweet fleeting moments with your newborn and the emotional roller coaster that mothers talk about is real. My body ached, I was sleep deprived, I was bleeding and had a new found appreciation for mesh undies. I was adjusting to my new body that’s now showcasing a squishy belly. I was introduced to horrid hemorrhoids and learning to breast feed and get a good latch was not an easy task in the beginning. It also didn’t help that I was sensitive to anything anyone told me. The first two weeks postpartum I also felt an odd emptiness, a sadness that I could no longer protect my baby in my belly and feel her daily kicks and the anticipation of her birth which seems silly but it’s how I felt at that moment in time. 

    The Postpartum period and the baby blues brings the unexpected. I read so many books and blogs before giving birth but nothing prepares you for those first few weeks except love, support and encouraging words  from family and friends. I realized my baby and I had to learn about each other. I needed to learn her crying cues and I had adjust to my new role as a momma while my body healed and hormones leveled out. I was fortunate enough to have my mom stay with me the first two weeks and having that support was essential. I recommend that all new mothers put together a support system for the first couple weeks as you heal and find your new way of life as a momma.

    The saying it takes a village brings own a whole new meaning to me now. My dear mother gave me good advice during her stay when I was feeling overwhelmed and said, "honey your job right now is to love and nurture your baby and yourself, nothing else." Once I processed those words of wisdom a weight lifted off my shoulders and I realized that was all that mattered and the cleaning, cooking, unfinished projects and emails could wait. 

    Today one month postpartum I feel strong and accomplished as a new momma, not every day is perfect I still struggle but love and nurturing my baby is a true gift and each day I learn new things about my baby girl and myself. Cheers to all the new mothers out there. Stay strong and confident in your instincts and may you find strength in yourself and all those around you during this postpartum transition and the sweet journey of motherhood.

     

    -Christine Rapley, @c.rara22

    Fourth Trimester

    Honestly, motherhood is hard as hell. It’s ram your head through a wall hard. It’s cry your eyes out at two in the morning hard. It’s wanting to scream at the top of your lungs 23 hours of the day (the other one hour you’ll be asleep…maybe) hard. It is not what I expected AT ALL

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    Most moms only tell you the good and magical things about being a mom. They don’t tell you about how postpartum bleeding lasts weeks after birth and your bathroom will look like a scene from Carrie, how it’s going to feel like your butt hole is going to rip into a million pieces the first time you poop (no really, that was scary shit. no pun intended). Or how you’ll have to squirt a bottle of water on yourself after you pee instead of wiping. Oh and hemorrhoids. Yup.
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    They don’t tell you that your body doesn’t just go back to what it was after you give birth (if you left the hospital in the jeans you wore pre pregnancy, I loathe you. jkjk…or am I?). They don’t tell you that peeing your pants every time you laugh, sneeze or move is normal now. They don’t tell you that you sometimes won’t even want to get out of bed because you’re scared of what the day might have in store for you. They don’t tell you that you won’t know what to do with your baby when you get home, how to calm them down, how to read what they want. They don’t tell you that you’ll probably have zero sex drive or any desire to even kiss your partner for weeks, you might even feel like you HATE them. They don’t tell you how much you’ll be googling “when does a newborn sleep through the night” and “why won’t my newborn stop crying”, no joke I must have googled this about 27 times and read the same articles over and over. Talking about poop color is now the norm and you might as well go save a poop color chart into your phone now.

    No mother wants to admit that when they first meet their baby, they don’t feel all mushy and warm inside like you’re supposed to. I had pictured us meeting to be magical but after pushing a watermelon sized human being out of your vagina it’s hard to be all sunshine and rainbows at first. It’s overwhelming for sure. And yeah, sometimes I even resented her a little for using me as a human pacifier! I remember one night just sitting up in bed crying hysterical while I was nursing her asking myself “WHY am I doing this???”, “WHY did I want this???” but of course those feelings start to fade and you realize it’s all worth it. You’ll question yourself, you’ll doubt yourself, you’ll even ask yourself if your baby is broken because they cry so much. But it’s beautiful in all its craziness.
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    Postpartum anxiety aka baby blues is SO real. Taking care of a tiny helpless human is actually pretty damn scary. You’ll worry about everything and anything. You’re afraid to fall asleep, you’re afraid to put them down to go to the bathroom or take a shower, you’ll constantly check if their chest is moving up and down while they’re sleeping. You’ll most likely feel like you have a lump in your throat 24/7. THIS IS NORMAL. Not only did your body go through a massive life change, so did your mind! Hormones are flying around like crazy, you’ll be crying one second and happy the next. It’s basically like having your period, but a thousand times worse. If you’re having trouble coping and your anxiety leads to depression, get help from your doctor, partner and loved ones. Don’t be afraid to ask for help – this does NOT make you a bad mom.

    You will constantly ask yourself, “why does she cry when I put her down?”, “why does she only sleep on my chest?”. For the first three months of your baby’s life, it can help to think of her like a fetus outside of the womb. I wish I had known this while I was pregnant so I could really understand WHY Rori was always crying and upset, it’s so hard to forget that every single thing for them is new. YOU are their entire world. They’ve been in your belly for the past nine months, the safe sounds of your heartbeat and the tightness and warmth of the womb is all they ever knew.UntitledNow just imagine yourself going back to womb from world…I wouldn’t be happy either! This is why I’m constantly promoting baby wearing and swaddling. It mimics the womb so baby is the most comfortable they can be and you can regain some sanity! White noise is a lifesaver even now and Rori is four months old. I’m not going to say it gets easier after the fourth trimester, but it definitely gets better. You’ll find yourself again, you’ll love your partner again, your body will go back to normal. This chapter seems endless and all babies are difficult, but one day your crazy ass will want another one! That’s motherhood. giphy (1).gif

    It takes a village.

    **I don’t want to scare anyone into having a baby, because it is a beautiful journey. I wrote this blog to educate new moms or soon to be moms on things that no one tells you about postpartum/fourth trimester!

     

    -Shannen Fusco, @raising.rori

    Check out Shannen's blog, www.lifeofafusco.com 

    One Week Postpartum Thoughts

    First week postpartum and I must admit it’s been a whirlwind of a journey. This being my 3rd c-section I remembered some discomforts and “things” that may happen in the days and weeks to follow. I knew my physical limitations would be many and my dependence on others would be necessary, but what I didn’t realize or remember fully were the emotions or pains that would follow. 


    I had a partial sense of recognition or remembrance to the “things” that were forthcoming but our minds have a way of blocking the bad so that the good can stay. First and foremost- empty shell.


    The feeling is real despite all the aches and pains associated with the third trimester. I carried this precious baby for 9 months and though I’m cradling him in my arms as I type this I miss the internal feelings. The morning jabs, hiccups, quick moves, and indescribable positions during the day somehow brought me so much comfort.
    As I begin this new breastfeeding journey I must admit I forgot the nerve pinching, foot tapping, jaw clinching pain during the first few latches but instantly remembered the comfort of having my baby’s skin on mine, being able to provide nutrition and comfort to him, and the quiet moments together just gazing at one another.


    C-section pain.... can we skip that one.. on a real note- my brain and body chose to remember this in bits and pieces. If you’ve ever had a c-section you know that laughing, sneezing, and coughing are all curse words! You never realize the use of your abdominal muscles in those actions until you have none left! I know it takes time but I’m married to a big jokester and laughing ultimately results in crying so all jokes are on hold in our house.


    Unexplainable Crying- my brain partially blocked that one too. Can I be honest here? I’ve cried at least 6 times today for no apparent reason.. dancing and crying, rocking my baby and crying, sitting in bed and crying... I’m sure you get the gist.


    Body image- my belly went from housing a watermelon to now a squishy half deflated bouncy ball. My incision looks like a battle wound, the brown line is still there, and my belly button can now go back to collecting lent. I’m definitely adjusting to this new body but guess what?! It took 9 months to grow my precious baby and it endured a major surgery- it’s going to take time for it to go back to pre baby and I’m ok with that. 
    This all may seem like a ramble and for the most part it is but guess what- all of this is normal! There is an endless list of “things” we as moms experience postpartum that are often left off social media, undermined, brushed off, or honestly just not talked about and it’s sad that society is that way. Postpartum is a journey that’s not always pretty. Our bodies, minds, and entire lives are changing and though that journey is different for each of us it’s so important that we embrace each “thing” one step at a time, encourage one another, and know that a lot of what you are feeling is completely normal and to not be afraid to ask for help!

     

    -Kelsey Spelce, @kelsey.spelce

    She was Different--I Felt it in My Bones

    Autism.

    It’s a diagnosis most of us know by name, but we don’t really know what it entails.

    We may think it’s someone who rocks back and forth and is kind of asocial, or maybe you have seen rain-man or what’s eating Gilbert grape and think that’s how autism looks.

    The truth is it can be all of the above, it’s a wide spectrum.

    Before my daughter received the diagnosis I didn’t know to much about it either.

    From the time Grace was born she was different. I felt it in my bones. She didn’t react like everyone said she would. She rarely cried when she was hungry, and she didn’t even like being fed most of the time. But I was a first time mom. So what did I know.

    As Grace grew older feedings became worse and worse. My whole life revolved around feeding and it was a huge stress factor.  We found a chair she liked sitting in to take her bottle and that was about it. Yes she was bottle fed, because breastfeeding was to much of a struggle and even though both, myself, my husband and our doctor, said it was the right thing to do the guilt still gnawed at me. I kept telling myself around 6-7 months we would do solids and soon struggles with feeding would be gone. But solids didn’t come naturally either and Grace wouldn’t really have any of it. She likes taking her bottle (“liked” it was still a struggle, but at least most times she would dream fed and I knew she got what she needed). Around 6 months she had a feeding study done, and it showed no physical reason for the issues.

    By 10 months she was enrolled in early intervention for feeding therapy and I had high hopes. She was also meeting most of her milestones..a little late but they were being met. I started looking at autism for some reason. I still had that weird feeling in my bones. Some of the signs were there, some weren’t. By the time my little princess turned a year I was 5 months pregnant with her little brother and starting to worry about the feeding situation. We were told “just make her.. they will eat when they are hungry” We’ll Grace did not eat, in-fact she did still not show signs of thirst or hunger. And seemed to be content not eating at all. Her therapy went okay, but it was a constant progress and regress situation back and forth.

    By the time our second was born it was clear bottle feeding was still something she needed. I managed to bottle feed to babies at once and got pretty good at it if I may say so myself. Our little boy was a good eater from day one. His love for food, showing us sign of hunger, how he progressed and kept progressing made it even more clear to me that I wasn’t just being a worried mom and that something was different with Grace. Talking and making sounds was also an area of concern as she seemed to regress with. For a while she stopped talking all together. When I brought it up with her speech therapist I was told no way she had autism. So I thought it was all in my head. By 24 months I asked our pediatrician for a referral and we got in super fast with a pediatric neurologist who fairly swift and certain diagnoses our girl with autism. At that point he also told us she might never talk. That part broke my heart.

    The autism diagnosis was honestly a relief as I had suspected it for a long time. But the mere thought that my daughter might never talk kept me up for many nights. We proceeded with trying to get her in to more therapy, that proved harder that I thought. We were met with people not believing the diagnosis and just brushing it off. Some places she was to young to get into and other places simply didn’t offer what we needed. As her younger brother started babbling suddenly so did she. And over months and months of patience, practice sign language, speech therapy etc. Grace is trying to communicate and while it’s not as advanced as someone her age, we are so proud and optimistic. We saw her neurologist for a follow up and he did mention she does have better eye contact than other children with autism, but that just means she is progressing and she is on the higher functioning part of the spectrum.

    There are many difficult parts of being an autism parent. Not being able to communicate with your child, seeing then frustration in their eyes. Seeing them struggle. The meltdowns causes by a change in routine that you couldn’t prevent, and all the little ticks and stems you have to get use to. But the hardest is hearing people say “oh she just needs to learn. She just needs to do this and that” knowing that professionals don’t grasp the struggle my little girl faces everyday and assume she is just doing it because she is misbehaving.. now that.. that’s the hardest part.

    My advice is find a dr you trust, don’t be afraid to change drs, therapist etc. it’s your child. They see them once or twice a week. They don’t know them like you do. And get parent training, we are currently enrolled in parent training and it’s providing us with tools to handle the hard times and learn to understand our daughter.

    I’m currently expecting our 3rd child, and while I know it will come with challenges I know God meant for us to have this new little one. I would say being a big sister has helped Grace progress a lot.. and I hope and pray that she can continue to progress and grow. And yes we still bottle-feed. After 2.5 years it’s not as bad :). 

     

    Autism has many faces, many ups and downs. Often the struggles are shared -But it’s not all struggles.. it’s beauty in seeing growth, and it’s supporting your child in new ways. It’s learning a patience I believe we can only receive from God. And it’s loving your child unconditionally the way only a parent can.

     

    -Lilly Clausen, @andlilly