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First blog post

This is the post excerpt.

I have decided to try something new. After Kenai was born I attempted to start my old blog back up but without a computer of my own it was getting a little tricky. I also shut it down to just me, as a journaling type of thing. But seriously, let’s be honest, I feel the need for a release. I want to be able to share my thoughts, feelings, ups and downs with others. Being a SAHM can get pretty lonely and I have been in the deepest waters of this the last few months. I absolutely love being able to be home with my babies but interaction with others is a powerful thing. With two older kids who are liking more time away from mama and a husband who is very busy getting a business up and running I often times have felt quite alone. I have decided to start this up and help me to release a bit instead of allowing things to bottle up. I am trying to find my best balancing act as the mother of 4, two preteens, a toddler, a baby with some special needs & a husband who is thankfully home a lot more than we’ve been used to in the past but still is crazy busy with his Kydex business.

I am excited for this new adventure and outlet I am about to start.

 

 

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Letting your light shine (and other’s, too!)

I’m not sure what it is about wanting to try and follow suite, we all have danced this dance to some degree throughout our lives. It’s a hard line to walk, a tiring line and one that will absolutely hamper your growth and dim your shine.

I find it funny when I scroll the gram, lately this is the area in my life I currently feel this the most. I think it’s crazy how similar others are, same filter overlaying their photos, same look, almost even the same sounding voice comes through on stories. I don’t understand. How can you truly reach your potential if you are reaching for anothers life?

We all have such a unique light to share and let shine yet so many of us dim that glow to try and be like others around us.

It’s ok to have a different color glow! It’s ok to want different things! It’s ok to talk a different way. It is ok to be DIFFERENT! Be uniquely yourself! I wish more would truly be ok with being them. And if you have tried to fit in a square for so long that was created by others I wish nothing more than for you to bust out of that freaking square and remember your beautiful self! The you that isn’t what and who others have created, just you!

Different is real. I am drawn towards people with depth, who are ok with saying what’s on their mind without fear of sounding odd. I love the analogy of looking through a stainglass window and how incredible it is to see each individual piece of glass making out and insanley beautiful image. How much more intresting that is to look at than a single pane of clear glass.

 

 

Battling Hypotonia

I wanted to share a little hack in the life of low tone or Hypotonia.

My son Kenai has a pretty severe case of hypotonia due to his rare genetics. He is getting so much stronger but it’s still something we fight daily.

His physical therapist mentioned studies showing where compression suits actually help quite a lot in aiding the tone to strengthen or increase. There are certain suits you can purchase but lets be honest, nothing in the special needs category is cheap by any means. This is why I wanted to share what we’ve done to help Kenai!

I bought a good, strong spandex type of leggings from the thrift store of all places for $3. I cut a leg off to the length needed, folded them in half, cut half circles for arm holes & then stitched together near the bottom for the leg holes. I’ve also made little shorts this same way to help combat “frog legs” or the W sit. It has helped Kenai so much & saved us literally hundreds of dollars. Hope this can help someone else,too!

Thankful for support…

I have been thinking so much today about how thankful I am for all of the support we have been given in the last, almost, two years. It has been a giant help, really more of a help than I think others realize.

Having a baby born with so many unexpected surprises is so scary, so life altering. We have had people help in almost every way you can imagine. I feel like I will never be able to show my thanks enough. This started with the NICU nurses & of course my favorite NICU doctor and from there trickled down to family, long time friends, and some people we didn’t even know well who came forward and lended a hand.  For the most part our support now comes in the form of encouraging words. I just want to say, those words help our forward momentum, they help us “drive on”. Getting daily messages & occasional gifts in the mail, some from complete strangers too, usually appear just when they are needed most (the universe is funny that way).

I am sharing this to just say, if ever someone you know is going through something DO NOT hesitate to reach out. Even if all you have to give is your words of support, sometimes that is exactly what they need.

Feeling alone after recieving a diagnosis for your child

In the lead up to Keani’s birth I was so excited. I was prepping like I had with my three other children, gathering outfits, blankets & diapers. Getting his bed ready, thinking of all of the things we would be doing with him, having him home for the holidays and how cute all of the “1st” pictures would be, I am kind of a crazy picture-taking mama. I was also watching others around me having babies close to my due date, this included friends and neighbors. It was such an exciting time.

Kenai was born 5 weeks premature, and he was also born very small, 3lbs15oz to be exact. We were admitted to the NICU, this experience alone is isolating, but still there are many that have walked a similar path, and many I was able to talk to. This quickly changed when Kenai was 5 days old and we were told he had an extremely rare genetic disorder, so rare in fact it is a nameless condition, I felt completely alone in that moment, this condition was something I had never heard of before. I suddenly found it hard to open up and really talk to family and friends, I also found it difficult to scroll through my Instagram or Facebook feeds and see my friend’s babies home, no wires, no tubes, no looming questions. I cried A LOT, I have absolutely never felt as alone as I did in that time.

Once Kenai came home from the NICU and I started to get my “feet under me” a little bit I began to search for others who I might be able to identify with more closely than those around me. I can honestly say I have never been more thankful for social media than I am now. I feel like I have support, I feel like I can open up about our world , I feel like even though life can be unsteady we are absolutely not alone. Even though most of the friends I have found through social media are not living our exact 7Q deletion, I totally feel like we now have our tribe. I am able to turn to these women, these incredible mothers, every time we have a hard day, new things pop up, when I need advice and so on & I hope they feel the same. There are still times I feel alone, especially because our story is so unique but I no longer feel darkness. I know social media can receive a bad rap, especially lately it seems, but the internet can be such an incredible thing.  I can’t imagine doing this alone, I am so grateful that I will never feel that deep sense of loneliness again.

What is it like to live with someone affected by a chromosome disorder?

IMG_20180515_151525231Chromosome disorder awareness week is coming up, June 17-23 actually. This is something many people do not know much about. Even with my background in special education I had not a clue what the doctors where trying to tell me when we were given a diagnosis for Kenai. So, if someone actually straight asked me what our life looked like with this unique little guy, whether their question came from curiosity or if they happen to find themselves in a similar situation, this would be my response…

I am still somewhat new to this world, Kenai is only about a year and a half right now and I know a lot of unknowns are still ahead. I was in such a dark space when I was told Kenai was born with a 7Q deletion, which means when he was conceived, his 2nd copy of chromosome 7 somehow missed wrapping together in a spot, he is missing over 100 genes, that is a pretty large deletion, to this date I have not found anyone who is missing the exact piece as he is. There are however 34 other similar cases, that fall close to his deletion & I am grateful for those who have opened up to me along this journey, this journey set in a question mark, cobblestone path. There are so many unknowns, actually everything with him is an unknown and that was at first the reason I found myself in darkness, that was incredibly scary to try and grasp. I now personally find this  comforting though, because he has no set in stone limitations, he is “coded” in such a unique way, that he is living his life exactly as he is meant to live it, I just have to remind myself of that, sometimes more often than others.

I am the mother of 5, Kenai is our 4th. It has been extremely different having a baby who does not develop in the way his siblings have. It is hard on my heart, I would absolutely be lying if I did not admit that. It is hard at times to not look at others his age or younger who are up running around and not wish that for him. It is hard to have others look at us and wonder why he is so small, or why he is not yet sitting up, or just watch us from afar at all because I sometimes wonder what they might be thinking, those things are hard. It is hard to wonder when he will strengthen, when he might talk, what his life will look like, those things are hard. And our life has forever been altered. Our entire clan has entered a new space. But as hard as it can be it is that much more beautiful.

When he hits a new milestone, no matter how long it took to hit, it is honestly that much more beautiful. When I watch the special, unique bonds he has with his brother and sisters, it is so beautiful. When I watch his sweet nature, taking in the world around him, it is so beautiful. When I see the new light he brought with him that shines so incredibly bright, it is so beautiful.

I guess I am saying I would without a doubt tell someone, if they asked, that having Kenai in our family has been life altering. There are stormy days but they are always followed by a rainbow. I feel like our family hit the jackpot with the force that is this boy, we are so lucky to see this side of life, it is a side very few are able to truly witness. I look forward to every chapter. I don’t wait for a “what ifs” of a scary medical diagnosis, I wait for the triumphs and miracles that are in front of us, that we are watching first hand unfold in our home on a daily basis. This is what it has been like, for us, to live with someone affected by a chromosome disorder…or as I like to say “a funky 7th chromosome” 🙂 .

For Mama’s – A Little more Love and a Little less Judge

With Mother’s Day coming up I wanted to share a little bit about my thoughts on this crazy, beautiful time.

I feel like so many of us are doing our absolute best, but for the majority we feel like we cannot show our true selves. We are trying to throw rose color glasses on everyone’s faces who see us from the outside by using a rose color filter. We want to feel included, full and accepted and I think this might be a sliver of the  reasoning on why we try so hard to keep this act up.

For as long as I can recall I remember hearing women talk about other women. Talk about other women for all kinds of reasons. Sometimes they were compliments but that was defiantly not always the case. It is no shocker I am guilty of the same… honestly aren’t we all?  I have however tried hard to switch up this habit over the last year or so, habits can be broken and for that I’m thankful.

I personally feel better not engaging in this sort of thing, freer in a lot of ways. I started to switch up this habit originally for myself but looking at it differently I feel like I’ll keep it up for my daughters. I am raising three amazing, beautiful & strong-willed little ladies, I’m hoping to set a better example for them, they deserve that.

Life is not easy, motherhood is not easy, it is not always a perfect “insta ready” shot, it is real. If we all got a little more real with ourselves & each other and remembered we are not here to win a medal, we are here to live & let live, (at least I believe that is an easier way) & our lives aren’t meant to look like everyone elses, (& btw that is so unbelievably rad to me!) I really think we could make a major impact on every person in our direct circle, which in turn would snowball to so many more. None of us really know what someone else is going through but maybe if we all showed a little more “real”, a little more love & a little less “judge” (with ourselves as well as others) our lives & those around us would feel a little lighter.  So many of us are walking through motherhood together yet this deep feeling of divide at times & judgement can really make you feel alone despite being in such a gigantic “club”.

So happy Mother’s Day to all of you moms out there. It’s ok to have bad, hard days, it’s ok to show messy counters, messy floors, & kids that don’t look like they in a life style shoot. Life, real life, is so beautiful! Show your madness, and love up every second because one day your house will be quite and you will miss every second. You will want to remember it just as it truly is.

What a “good nurse” means…

This week is ‘Nurses Week’ and I feel like I can’t go through this week without showing my appreciation for a few of our favorite humans.

I’ve met many nurses. I’ve had little communication with some nurses and quite a bit in other situations.  I have had nurses that I’m not sure if they knew what they were doing and others I loved and when I was their patient either way was ok for me, I could deal. I never truly learned how much I appreciate a good nurse though, until my own baby had days and days of “touch and go” situations. I now know what a “good nurse” means to me.

There are plenty that might be good at their job but that still isn’t enough to give your mama heart peace of mind when you have to be miles away from your child, or let’s be honest, sometimes when you just have to step away to use the bathroom or eat. I have nurses that I love so SO much! Ones that I honestly think about a lot & know how much they not only helped our little man but carried me, too.

To me a good nurse knows her game, yes, of course that is so important, but for me it’s  those that stepped above that are my favorites. The ones that met me at the door to prep me when my little boy had just had to be bagged, more than a few times to try & make sure I didn’t walk right into a scary situation, the ones that texted me photos throughout the day when I had to be out of the hospital & it was hurting my heart to not be there but I am the mama to more than one who needed me, the ones that loved on my baby & held and rocked him, the ones that made sure he was looking as cute as could be despite the cords and tubes and reality of that moment, the ones that let me pick his bedding (little things like that are so important and at times you feel robbed when you feel like you are missing out), the ones that genuinely asked “how are you doing” when you sat and rocked your baby in a hospital instead of in your own home and then didn’t act weirded out when you sat and sobbed all over, the ones that didn’t point out your baby’s differences and stood next to you and awed over him instead, the ones that supported your every wish and decision, the ones that offered to capture moments with your baby instead of you having to ask if they take a cell phone picture and then them acting “put off” the ones that sat with you and just listened after every new surprise or medical diagnosis was given, the ones that hugged you and cried with you as your baby was taken away on life flight, the ones that made sure your other kids felt loved each time they came in the hospital room, the ones that took your two-year old in the other room to play legos so you could have a few minutes with your baby before they loaded him on life flight, the ones on life flight texting you updates throughout the flight as he flew 5 hours away from you, the ones on that life flight that made sure to come and hug you at the new “big  hospital” full of unfamiliar everything, the ones that checked on you throughout your weeks there, the ones who set up a beautiful welcome home room when he was back transported, the ones who still to this day check in with us (even stopping by the house months later as we prepped for open heart surgery)…those are our nurses, those are our people. We have since met new nurses and great nurses, but it’s hard to beat those favorite nurses at Dixie, still we appreciate when we are blessed with an incredible nurse, worth their weight in gold. I honestly wish I could bring you all lunch everyday! I also wish I had pictures of all of our favorites but I’m sharing the ones I do happen to have. Thank you for being amazing, we are so lucky to have had you all in our world! Forever grateful!