Feeling It All

The last several days, I’ve been re-reading old posts that I’d written on this little blog and also in some of the BabyCenter groups that I was active in around the time that we began to worry that something was going on with Ruby’s development and then again when we found out we were expecting Landon and the months of waiting that followed. It’s still so hard to go back to that time. Thankfully, I had a strong support system of family, friends, and random strangers on the internet (who became the most incredible friends) that were there through each tough moment.

I remember sobbing in my office at work, spilling my heart to a friend in words that probably made no sense, after I found out they wanted to test Ruby for SMA. My friend didn’t know what to say, but he was there and that’s all I needed. I remember sitting on our bed with Terence,  losing my ever-loving mind when I stumbled upon a blog post written by another mom of a child with SMA and realizing that her description of her daughter’s symptoms fit my daughter’s to a T. When we got Ruby’s diagnosis, the office I worked in was under renovation so my desk was literally in the middle of an open space, with staff and co-workers buzzing by all the time. When I was unable to hold in my tears and anxiety, my friend Tanya was always there to let me vent in her office. And my best friend, Michelle, was the first person I saw after I got the phone call from the geneticist, telling me that Landon had zero copies of  the SMN1 gene & would indeed live with SMA. I put the phone down, called Terence, and then Michelle. Thank the Lord we worked together because two minutes later, she was in my office, folding me up in a hug, and crying right along with me, understanding that I loved Landon already more than anything but I was terrified for what the future may hold.

My heart is pounding as I type these memories out because it was all so traumatic. And it’s had lasting effects - the absolute mess of anxiety attacks and obsessing over the unknown and having faith and doing all we can/need to do. I absolutely know I am not alone in these feelings. Lots of my friends who have gone through the same experiences have shared the flashbacks, the panic attacks, the depression, and fear they experience. We push it back and move forward because that is just what has to be done but the trauma of the experience never goes away.

 I am so thankful that this experience is MY experience and will never be Ruby’s or Landon’s. They don’t have a “diagnosis day”. This is their life. It’s beautiful and it’s what they know. Their biggest struggle is the last time out I put them in time out or the last time I refused to enter Target’s toy section with them  I won’t project my thoughts or feelings on them about my experience as a parent and learning about SMA.. But the fact remains - it is my story and as a parent, in order to move forward, I have to speak the truth about it from time to time. It helps me release the tension when it builds up and it forces me to reflect on how far we’ve all come since then which is a good thing. It’s a reflection of what Glennon Doyle says - first the pain, then the rising. Friday, then Sunday. Dark cocoon, then blossoming butterfly.

So I guess I’ve been doing that lately, going through that cycle again. It doesn’t come around all that often but when it does, I resolved long ago to let myself feel it all. One of the things I’ve learned from the last several years of my life is the importantance of sitting in the pain when it comes. Pushing it down will only make me depressed and bitter, neither of which I want to be. I want to share this because I’m often told by others that they are amazed by how I hold it all together but the truth is that I don’t all the time. The only reason I’m able to maintain the positive outlook that I have is directly related to the fact that I don’t try to have it all together and I let myself feel the shock and pain from time to time. So if that’s you - if you’re trying so hard to avoid letting it all out, admitting your vulnerability, or speaking about your fears (about anything in life), please know that you’re not alone. Life is awful and amazing and it just keeps spinning. And we are all on this ride together.

flashback friday: two day old ruby

flashback friday: march 17, 2014. ruby was two days old. that purple nail polish was on my nails when she was born. I still had my you-look-6-months baby belly & this was our first night home together. she will be 4 in about a week & I just can't believe how long ago it seems & yet it feels like it was just yesterday. I feel like I am a completely different person. when I took this picture, we had no idea that ruby would live her life with sma. the disease was asleep still. it wouldn't show symptoms until over a year later. I often look back & wonder what I possibly could have worried about back then. I was foolish. of course, at the time they were understandable worries & stress about leaving her at day care & whether she was gaining enough weight, etc. but now? well, perspective is a beautiful thing. 

this path that we walk with ruby, and now landon, is very strange at times. it can be sad, of course, but the most difficult parts for me are learning to balance feelings that are so contradictory. 

i hate watching my kids get weaker or struggle. I hate worrying about them getting sick. but I know that sma has taught me the value of health, of true appreciation for what we do have. 

i hate that i have to hear ruby tell me she wishes she could stand so she could give me a hug standing up. but I know that sma has given me so many more opportunities to teach ruby about what really matters in life & how to love all of our differences. 

it's a fine line to walk & just like any parent, I question myself constantly as to whether I'm doing the right thing & wonder why God would think I'm up to the task raising tiny humans. 

but with ruby, there's never any wondering. since the moment she came Earthside, she has made her every intention, thought, & preference clear. she feels everything 100 times over & shares that feeling with everyone by way of a dashing smile, a wicked stare down, or a face full of tears & sobs. she is full of love. she gives it to those she loves, freely & usually in a goofy way. for me, it's with just a look that says more than words ever can. she's the one who made me a mama. when I'm doubting my ability, I'm reminded how much she has taught me, when I let her. no matter the tough-to-learn lessons life brings, she always brings the light in. she's our sunshine girl, after all. and i can't believe she's almost four. 

landon arrives: our birth story

my sweet, sweet, sweet landon jakob. I don't even know where to begin when describing our birth story. our labor & delivery was crazy fast, a blur. but there was so much anticipation & gratefulness for landon. I was really curious what he would look like. I couldn't wait to see in what ways he would be similar to & different than ruby. 

like most pregnancies, it flew by & crawled by at the same time. typical sick & tired first trimester, a better second trimester (full of nesting, I don't think I ever washed so many dishes before), & ready-to-meet-my-babe third trimester. I knew that our labor & delivery would be quicker than ruby's & mine, but I wouldn't have guessed in a 100 years that it would go the way it did. here it is.

at 35 weeks, my doctor checked me for dilation & there was none. I said I didn't want to be checked again until 39 weeks & time carried on. 

at 39 weeks, my doctor checked for dilation again. 3 cm! I was very happy with that since I really did not want to be induced & if I did have to be induced, I hoped I wouldn't be starting from 0. my doctor warned me to not wait too long to come in when I started having contractions, since I was already 3 cm. so that was on Thursday, April 17th. my due date was the 22nd. 

the next day (the morning of the 18th), I woke up & noticed that I'd lost some of my mucus plug (and yes, that is every bit as disgusting as it sounds). no contractions, felt like I usually did. I went to work & got everything on my list done. I left work around 4:30 & picked up ruby at her friend Ava's house. Noticed I'd lost more of my plug, but still no contractions or anything. So we decided to stick with our plan to meet T & go to dinner in Racine (about 45 minutes from our house.) 

Dinner was wonderful, on the lake, & everything was tasty. It was at a restaurant owned by the brother of one of T's close friends & they showed us around the place just before we left. I had my first contraction while we looked at their outdoor patio, didn't say anything to anyone, but got anxious to go. It was about 8:15 at that point. 

We got in the car & I was driving about 5 minutes when I had a much more noticeable contraction. We switched seats and got back on the road. It was about 8:30 then. 

Almost immediately, the contractions got stronger and consistently closer together. I was having to breath through them after the first couple. Terence hauled some serious booty (speed limits broken, may have ran some red lights and stop signs, and drove in the bus lane. desperate times, people, and thou shall not argue with a laboring woman. you just drive. calmly. and quickly.) We got back into Milwaukee at about 9:00 & went straight to the ER.

*Just a side note that Ruby was in the backseat this entire time. She was watching Disney Jr on my phone and asking me questions, which I tried to answer as calm as possible. I was super stressed that she was there but I knew if I showed how much I was feeling the contractions she'd get freaked out, so we carried on on our crazy drive to the hospital (and called T's sister and husband to pick up Mom to meet us at the hospital!) *

When we got to the ER, my contractions were about 1- 2 minutes apart. They took me right up to labor & delivery & I got checked into a room. By that time it was about 9:15 & the contractions were one after the other. T left the room with Ruby to wait for our entourage, who were almost there. That left me to labor for a few minutes with our nurse. She was a wonderful woman, very calm, supportive. After a few minutes of laboring, she asked if I felt any urge to push. I replied that I did so she helped me over to the bed to check me. 10 cm. It was about 9:30 by then.

My wonderfully supportive, calm nurse then began to page everyone and anyone who was free to help with delivery. My doctor was off for Easter weekend so they paged the on call doc, who thankfully lived about a mile away. (I later ground out that his wife drove him to the hospital so he didn't above to waste time parking. God bless that woman, too.) 

it was about this time that the room started to fill up with residents and doctors & also T came back to the room, leaving Ruby with his sister, her husband, and my mom. and the nurse told me I could start pushing anytime (that's pretty much the first thing T heard when he retuned to the room. welcome back, honey! I'm about to start pushing. glad you made it! :) ) 

My contractions were nonstop & my body was doing it's own thing. I had a very strong one, I pushed, and my water broke...all over T. sorry, honey. aren't ya glad you showed up just in time for that?! ;) About this time Dr. W (on call doc) showed up & Landon's heart rate dropped a lot, quickly. It became a bit more hectic in the room. Dr. W said it was important that Landon come out quickly and that he'd assist with forceps and I needed to push as hard as I possibly could. So that's what I did. Two pushes (and about 15 seconds) later, Landon was born. All 8 lbs 7 oz of him. it was 9:55 pm. an hour & a half after my first contraction, he was here. and he was perfect. 

he was brought to me right away. He stayed with T & me the entire time they worked on me & I am so grateful for that. then we were brought up to the mom & baby floor & ruby & some of our family got to visit. it was wonderful. I was exhausted but so happy & relieved to have him here, safe & sound. 

ruby loves Landon something fierce. she talks to him & covers him in hugs & kisses. I am in love with watching them grow together. T is an incredible dad, again. no surprise there & I'm so grateful for all his support in the busy couple of months it's been. and I know he loves having another boy in the house to even the male:female playing field. 

Landon is the perfect addition to our family. I already can't imagine life without him & I can't remember what our life was without him in it. it's like he's always been with us. 

some memories

hey there little neglected blog, how are you? it's nice to see you again. let's move passed the awkwardness of me ignoring you for months and move on to some memories to be documented, shall we? 

in February, we went on our second annual family weekend away. when ruby was diagnosed with SMA last year, we went to a resort (the same one we got married at) for a weekend. it was great to get away, spend some QT (quality time, in T Sun language), swim, and just relax. this year, we thought we should continue the tradition and decided to take in a weekend at the Dells and do some indoor waterpark fun. ruby loved it, of course. it was, indeed, fun to get away and have some uninterrupted family time. 

when we were at one if the kiddie pools the second day, ruby was playing in the water & I was watching her watch all the other kids run around and splash. I suddenly got so, so sad. I was probably completing projecting this on her & she was likely just happy to be sitting in the water, crawling around. but I told T that I wondered if she was wishing she could be running around, too. and all of the sudden, I was in tears. Terence was amazing, like he always is. he went and got ruby & they played like crazy in the water, for a good hour. she was laughing so hard and loving every minute of it. I said back and cried, feeling thankful for what a great dad T is and also recognizing that my 7 month pregnant hormones were also at play here. eventually I relaxed & just enjoyed watching them play. they were running under these huge buckets of water that would fill up & the eventually dump out on their victims below. a dad came up to me & said "what a brave little girl you have there! my 7 year old won't go anywhere near those." I smiled and remarked that that is ruby's natural way. she is always looking for more fun, something new, and she doesn't let anything hold her back. it was a godsent moment for that guy to remark that ruby is brave, though. I needed to hear those words, even if he had no idea the impact they had on me in the moment. 

that was also the first weekend that we took ruby out with just her wheelchair and no option to push her in the stroller. she wanted to use her chair so that's what we did. on our way back on Sunday, we stopped by an outlet mall and ruby got to do some shopping, independently, in her chair. it was so much fun to see her roll around and look at the things she wanted to check out (disney toys, hair accessories, sunglasses) without asking me to take her "over there, mama! look over here!" I got a sweet pictures of her checking out some headbands and I love how it shows her slowly figuring out her own ways to be independent. 

some moments are hard. some memories are like a punch to the guy. but overall, we are so grateful for ruby's health and pray that baby boy coming in just a few weeks will be given respiratory strength and a fighting spirit, like his sister. I have no doubt she will teach him all sorts of things that their dad and I can't. I know they will fill a spot in each other's lives that no one else can fill. and I know that they both do that for their dad and me. 

then & now

one year ago today, we had ruby's first neurology appointment. two weeks later, two days before my 30th birthday, we got her diagnosis of SMA. 

earlier this month, I was having a lot of anxiety & flashbacks to those days last year, when I just knew something was really "wrong" & then feeling like we were living our worst nightmare. 

a year later, some days are really painful, but those days are few & far in between. this is our life & it is wonderful. it's not what we imagined it would be. it's so much more. SMA & all that comes with it has taught me so much about perspective, about gratitude, and about faith. 

in just a few months, we will welcome another baby. this time we will know from the beginning that he will also be affected by SMA. we won't worry for months about how best to help him, we will know how. we won't experience a "diagnosis day" like we did with ruby. we will have a team of people and support in place from the get-go that we trust to help support him when the time comes that he needs the extra support. 

when we got ruby's diagnosis, I felt like everything had changed in an instant. but almost as quickly, I realized that nothing really ever changed at all. we are raising our kids, just as we would if SMA didn't affect our lives. instead of living in constant fear of what the future may bring, I live each day, focuses on being thankful for what we have.   

"may your choices reflect your hopes, not your fears. - nelson mandela 

FSMA Conference

hi there.

thanks for hanging around. i haven't posted in months. lots going on but i've known exactly what i wanted to post the next time i logged in. so, here i am to document a few details from our trip to our first Families of SMA Conference, which was held at Disneyland this year. it was a successful trip. full of lots to do and not a ton of down time, but i really couldn't be happier with how it all went.

there was a program specifically for newly diagnosed families that we attended the first afternoon. i won't lie. it was hard. i sat and listened, holding T's hand, with tears streaming down my face the whole session. the president of FSMA spoke and has a very genuine, kind way of communicating. it was a relief to be somewhere safe, surrounded by people who knew exactly how we were feeling. at first, i kept thinking, "i hope i'm not the only one crying" but when we took our break, i saw that i clearly wasn't alone. i think that's what i loved the most about conference. we didn't have to explain why we were crying at any given moment. we didn't have to explain anything. everyone just gets us. in our every day life, we have a mostly positive attitude. we keep smiles on and carry on with our daily responsibilities. we're strong for one another (T & i) and for ruby. and because it doesn't do any good to constantly dwell on the pain that SMA brings. but i know that in order to carry on, we have to sometimes let ourselves sit with the fear and sadness that we have. some moments we have to give in to it in order to let it out, let it go, and move forward. so, the conference was good for me in that way. before the conference, i hadn't really reached out to the SMA community. after the conference, i was friending people on facebook like a maniac. :)

next year's conference is in DC and we are hopeful that we will be able to go. lots to plan for it but it's something we don't want to miss out on. i've connected with many families in the online SMA community and really want to be able to meet them in person, too.

we went to several different sessions but the one that i liked the most and has stayed with me was a writing workshop. it was led by a husband and wife, who were both writers, and who also have a child who is diagnosed with SMA. one of the exercises we did was to write out our recollection of a significant memory. i thought i would share what i wrote here.

a memory: ruby's diagnosis day

i see...
a lot of hard surfaces, tiles, counters
ruby playing with crayons
a lot of new faces

i feel...
ruby's toys all around us
terence's hand

i hear...
a lot of words. most of which i don't remember now, other than the doctor answering Terence's question about whether ruby will ever walk (no.)
the doctor's strong accent

i smell...
hand sanitizer and soap

the light is bright and harsh. it isn't soft. there iss no place to hide in it.

i want to leave.

i think that this can't be happening. it doesn't make sense.

i feel sick to my stomach. i feel shocked even though i knew this was the answer already, really.

we talk to several strangers & then we leave.

i call my family.

i say that my husband might need more support.

i realize that everything has changed. and that nothing really has at all.

wordless-ish wednesday: huge disney photo dump!

so, I really am going to keep this pretty wordless. I am formulating a post about our experience at the FSMA conference & then our vacation but first I want to document some of my favorite photos from the trip. I took around 400 total so this is only a tenth of them but just looking back over these few remind me of how lucky we were to get to do this. and how fortunate we were to get to go with some family. actually, looking at these pictures, i'm disappointed in myself for not getting any pictures of my mom. hoping that my sisters may have some. i also will never forget that we owe our entire trip to so many friends, family, & strangers that helped us get there. "thanks" can't be said enough! 

so, enough talk - here is our trip in photos!