Friday, August 26, 2016

Special Needs Spotlight || Fragile X Siblings



Hi. I'm Rachael. I'm married to a fantastic and fantastically handsome man, Marc. We have 3 children ages 16, 11 and 6, whom all have what is called Fragile X Syndrome. Marc and I love adventure and friendship and we try very hard to include out children in as much as we can despite their anxieties, sensory issues or physical struggles. For my children's safety, and my peace of mind, in public blogs I call my children Brother, Sister and Baby.


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Miggy: Welcome Rachel, Thank you for being here and sharing your beautiful family with us today. You have 3 children all of whom have Fragile X syndrome. Starting with your oldest, can you take me back to the day you knew something wasn't quite right with your son? How long did it take you to get a diagnosis? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? Can you also tell us about the process of getting your other 2 kids diagnosed?

Rachael: When Brother was 3 months old a friend in my neighborhood who, at the time, worked in childhood early intervention approached me and said, "Um, there is something wrong with your son." I wasn't offended, just surprised that she would even notice anything of a baby of 3 months old and just assured her (and myself) that he was just a very tired and calmly happy baby.

Then at 9 months when he wasn't rolling over, babbling, struggling with nursing, and not sitting up unless propped I went to that same friend and asked her where to turn.

To make a long story short, Brother was unofficially diagnosed as "Globally Delayed" (which, basically, means he's so far behind in everything physically and mentally and cognitively that he needed all the amount of help possible). We went with this for the first 5 years of his life. Not because we hadn't tried to find another, more official diagnosis, believe me, MRI's, psychologists, psychiatrists, CAT Scans and observations had overwhelmed his life. We had given up on all the testing at age 3 because it was just too much for all of us to deal with emotionally and physically. During this break from a diagnosis my husband's cousin said she had read an article about something called Fragile X Syndrome and thought that it might be Brother's issue and gave me the website that was included in the article. As soon as I could I went to fragilex.org  and began reading all about Fragile X's symptoms and it all described our son to a 'T' or an 'X' if you will. Anyway I brought this up to his teachers and IEP team when he was in preschool and they assured me that Brother was WAY to high functioning to have Fragile X Syndrome. They had learned about that in college and they were not seeing the mental retardation (sorry, that's the technical term used at the time) that they had learned was part of Fragile X. So, we just waited it out for another year hoping that we would have an answer some day.

"Have you ever heard of Fragile X Syndrome?" our Pediatrician asked when we came in for his 5 year well-check. I started to laugh/cry because I had and that's what I wanted him tested for, I knew in my heart this was it.

One blood test later and it was confirmed that he had Fragile X Syndrome. This meant that our now, 9-month-old daughter should be tested.

She was diagnosed with it too.

Our world came crashing down. All the hopes and dreams we had for our children were dashed into pieces by an X. We went into a weird place of swimming in information because no one, including our Pediatrician knew anything about it and depression because it was, as if, we had faced the death of two children... all our hopes and dreams for them dead.

That was a tough few years and got tougher when we were surprised by a third pregnancy, our Baby. We had her blood drawn for the Fragile X test at birth and we were informed that she also had Fragile X Syndrome.

We crashed again.

Those were hard times.

Flash forward to now and we have just learned a new kind of normal and we dream different dreams. It's Our Life.

Miggy: You are in the unique position of having 3 children with special needs. First, can you please educate us on Fragile X and how each of your children are affect? Also, how does fragile X affect your family's day-to-day life?  
                                                                 
Rachael: Fragile X Syndrome is the world's leading cause of mental impairment and the leading known inherited cause of Autism.I know it's a mouthful. FXS affects so much more than their mental abilities and is known as a spectrum disorder because it affects everyone so differently. For instance, many females diagnosed with FXS are quite high functioning and I know some that are even educated mothers and wives who never even knew that FXS was part of their life until their child was diagnosed. The reason females can be higher functioning is because they have the compensating X Chromosome that the body can rely on for higher functioning. However, both of our daughters are severely affected as far as females go and so I often feel like I'm walking alone a bit trying to understand their EXTREME anxiety, hyper-arousal, sensory issues and mental impairment that take over their bodies. On the other hand, males are typically very affected by FXS because they only have one X Chromosome to rely on and that is their affected one, but our son is considered high functioning for FXS. Don't let the term "high functioning" fool you into thinking that he's easier, it just means that he has learned how to adapt and communicate better than the FX 'norm.' For instance, with Brother, he has more of the physical characteristics like loose muscle tone, loose connective tissue and double jointedness that were part of why he wasn't able to walk, crawl, or sit up until a later age.

Our day-to-day seems so normal to us until we have some one over and they observe our lifestyle. It's funny to me when I realize that not everyone has to give their children 5 and 10 minute warnings to things like dinnertime, family prayer, a drive to see scenery, getting ready for bed--basically anything that changes. Anything. We are constantly on our tiptoes or eggshells depending on the mood of the day and we have to be fully prepared for any and all meltdowns and panic attacks that may occur because our lack of planning or pretty much any unforeseen occurrence that is not in accordance with one or all of their expectations. But, if we can be organized, prepared and use timers and picture schedules we can have some good successes.

Miggy: What are the biggest worries you face for your children? On the flip side, what are the hopes and dreams you have for your children?

Rachael: Sadly, my children have faced abuse and bullying so I guess those big worries have already happened so now I worry about the other things like, "Will they ever ... " nything you hope for your child. Looking into getting legal guardianship of my own children by their 18th birthday to assure that I can still help them in life. And, heaven forbid, that Marc and I die before they do.

My hope is that Brother might be able to be in the competition choir at his high school by his senior year and maybe even be a yell leader or captain for the cheer team.

I hope Sister succeeds in track when she starts Junior High school because she shows so much potential in running.

I hope that Baby is potty trained before 8 so that she can play with kids her age and not look like the over-sized 2-year-old toddler in the group. Oh, and I hope that some day she learns to ride a tricycle or bike someday.

I've learned to hope for the near future and plan for the further… it's just how I survive.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Rachael: I have realized that not every 11-year-old on the planet is terrified of a tornado coming when the clouds come in (we live in Utah for Pete's sake). I know that not every 16-almost-17-year-old young man loves to spend hours coloring my little ponies. I also know that people might be a little surprised when asked how they can help with Baby and I tell them to sit on her or roll her in a rug...


Miggy: How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Rachael: The best way to approach Brother is to talk to him without looking him in the face. I know it sounds weird, but he responds so much better when he doesn't feel the pressure to make the eye contact. So I have taught people to look at the floor when they are talking to him and as he feels more comfortable he will make eye contact.

With Sister, she just wants to be involved with everyone else and be like every one else. She doesn't see that she is different. This can be hard for kids because they will treat her the same as others and then she may have a meltdown or panic attack and they don't know how to react. This is just something that a person has to get to know about her and know that it is not their fault or that she is mad at them, it is just her body reacting to her surroundings.

Baby loves to be loved, hugged, squished and loves to giggle. People just have to not be afraid to show her affection and compassion. She senses who will do this for her.

Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?    

Rachael: I would say the same thing that was told to me by a fellow FX mom when I reached out to her for help, "First, take care of yourself." I was slightly taken back by this statement and thought, "Hello? Did you just hear me tell you my child had Fragile X Syndrome? How could I possibly think of myself?" After a while I understood. If I wasn't emotionally and mentally OK, I wasn't emotionally and mentally OK enough to take great care of my children. I had to make sure I was strong enough to take on the challenges I had been blessed with.

If I went back in time I would tell myself where we are now and to not lose hope, the sun will come.


Miggy: What is the biggest lesson you’ve learned since becoming a Fragile X mom?

Rachael: Never stop laughing. There are SO many funny things in life when it comes to raising children and it is now different with Special Needs. Life is to be loved and enjoyed regardless of your circumstance. Laughing together and laughing after a trial is over doesn't mean you are insensitive, it just means you know how to make lemonade!

If you want to read about how I laugh at things sometimes and how I cry about things too, sometimes even cry and laugh at the same time you can check out my blog at marcandrachael.blogspot.com
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Rachael, thank you. That was so beautiful; Raw, real and uplifting and hopeful. I appreciate your honesty in how very difficult it was for you with each of your children's diagnosis. Its so important to live in our truth--even if that truth is difficult and heartbreaking--because it helps us move on to the next chapter and you summed it up beautifully: We dream new dreams now. And I love that you said, never stop laughing. Yes! Life IS to be loved and enjoyed despite our circumstances and like you I believe there is joy to be found everywhere, even if we have to dig a little to find it. Thanks again Rachael, your family is just beautiful. Sending you so much love. 

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy @ gmail dot com. 

Have a great weekend!
XO
Miggy

Wednesday, August 24, 2016

Eat: Brie + Mango Quesadillas


This is one of my very favorite lunch indulgences of all time: brie + mango quesadillas. I got the recipe from a blog that no longer exists (Fresh365) and seriously loved all her recipes. I'm not sure why she shut down her site but I wish she'd come back! Her recipes were so delicious! And this one really stands out as a favorite. The ingredients are pretty simple and yet it packs such a tasty punch.

Ingredients:
tortillas
mango
brie cheese
pecans
green onions
salt, pepper, honey, olive oil (optional)


1. Peel and thinly slice mango. (1 mango is usually enough for 2 quesadillas.) Grab a hand full of pecans and chop. Thinly dice 2 green onions. And cut brie cheese into thin slices as well.

2. Arrange brie cheese on the bottom of a cooked tortilla, followed by mango slices, pecans and green onions (leave some extra green onions and pecans for the topping). I also like to add a small drizzle of honey and some salt + fresh cracked pepper.

3. Add the other tortilla and cook on griddle top or in non stick pan with brie side down first. Cook until cheese melts and tortilla browns. Then flip and cook the other side.

4. Cut into 4 sections and drizzle with a little olive oil and sprinkle remaining green onions and pecans.

 Enjoy!

XO
Miggy


Monday, August 22, 2016

S C H O O L + How to Navigate a Special Needs Encounter



It's that time of year again... school supplies, new shoes, school lunches. It's all so exciting! For the first few weeks anyway. This year also marks a new beginning for us as we now have TWO girls in all day school. It feels both strange and exciting. More time with my littlest one and more freedom as we no longer have mid-day school drop-offs. But of course having Lamp gone all day will be an adjustment. Zuzu's going to miss her bff. But adjust we will.

I wanted to revisit a post I did last year at this time about talking to your kids about their special needs peers. In general, it's great to talk to our kids about being kind and inclusive at school. I've long considered this post by Glennon Dolye Melton as the holy text of back-to-school talks. It's wonderful.

BUT, if I may be so bold to say, it's not enough when it comes to our special needs and disabled kiddos.

See, a lot of what we teach our children about kindness and being inclusive flies right out of their brains when they see someone who is noticeably different. Especially when their young and inexperienced minds have never encountered someone with differences before. It's not because these kids are mean and want to make fun of a child with special needs. It's because they have questions! And concerns! And how's and why's and all sorts of stuff. It's really, really hard to remember to "be nice" when you're also trying to comprehend wheelchairs, limb differences, atypical movements or sounds, leg braces, walkers or any number of things that set our special needs kids apart.

Kids are curious. And that's OK. But curiosity can quickly turn to exclusion, discomfort, and even cruelty if left in a vacuum of ignorance. We have to teach our kids about differences.


Last year I was invited to come speak to the staff at Lamp's* school to educate them about Lamp and the best way to address their students questions and to steer them towards positive interactions. I was grateful the principle invited me because we can't teach the kids, until we teach the teachers. Unfortunately I had been in the school many time with Lamp where kids were staring, pointing and whispering with the teacher present and aware, but with no intervention on their part whatsoever. Frankly I was shocked as we had similar experience when Lamp would visit her sister's school in San Antonio but the teachers always intervened and talked to any kids who were acting inappropriately.

It took me about 5 years to come up with the following formula. While it's not perfect I follow this outline almost every time I'm navigating an encounter between Lamp and a child who has never met her before. You could say this method has been field tested a time or two (hundred). This is more for a face-to-face interaction, but would also be a great outline for having a discussion privately with your child as well. In fact, I have had many parents tell me that they've browsed through the Special Needs Spotlight posts with their kids to teach them about people with disabilities. You have no idea how happy that makes me to know the spotlight is being used as a teaching tool for young children.


How to Navigate a Special Needs Encounter with your Child

1) Questions are OK. 
The emotions that a child feels when seeing or meeting another child with special needs can range from curious to nervous or scared to just plain confused. Let your child know that if they have a question it's OK. Try not to shush them and turn them away from the child they just encountered--this only reinforces an exclusionary mentality. If your child points at Lamp and says "What happened to her arm!" my suggestion would be to get down on their level and have the whole "some people are born differently" conversation right then and there. We often say, "She was born differently" or "This is how God made her." And we talk about other differences like hair color, skin color, glasses, etc. It helps to reference friends or relatives who have a wheelchair, walker, glasses, etc. I know this is the hardest part because we think the kind thing is to shush our children and walk away. But walking away implies that there is something wrong with special needs kids and we don't interact with them. So please, do your best to stay. Remember, Lamp knows she has limb differences--it doesn't hurt her feelings to have it explained in front of her. What does hurt her feelings is having a rude interaction and then having that potential playmate taken away before things are set right, so-to-speak. 


2) Reinforce kindness
While it's important not to shame kids for their curiosity, it's also very important to let children know in no uncertain terms that certain things are NOT OK. It's not OK to point, stare, laugh, call names or use mean words. Even if your child does this innocently--"she's weird!" "Yuck! Why does her arm look like that?"--please correct them. For example, "That's not a nice word and that might hurt her feelings" or "that would really hurt your feelings if someone laughed at you." or "She's different than you, but she's not weird." It can be said kindly, it can be said firmly but it HAS to be said.


3) Find common ground
Once your child has some understanding that some people are just born differently now is a great time to find some common ground. "She may be a little different, but she's mostly the same as you. I bet she likes a lot of the same toys/games/food that you like." You can then ask the child or the child's caregiver what they like to do. Establishing this sameness is KEY. This is when the light goes on and children realize, oh... she's just another kid, like me. We are more alike than different!


4) Emphasize strengths
Now this one won't be as easy to do if you don't know the special needs child personally, but as Lamp's mom I try to emphasize that she is DIFFERENTLY-abled. Yes there are some things she can't do, like walking which is why she drives a power chair, but wow, she can drive a chair!  Or I always tell them, she might not be able to do somethings you can do but guess what? Lamp can write with her feet! This is when you see the jaws drop--literally. Again, it's super important for kids to understand from a young age that disabled really means differently-abled. If possible, try to help your child see a special needs child's strengths. 



A couple notes: 

--Of course I can't speak for all special needs families, but if you read my past spotlights the vast majority agree with this "stay and talk" approach. That being said, keep in mind that special needs families deal with these interactions all the time and we have our off days, and "I don't feel like dealing with this right now" moments. But again, the vast majority of families I've interviewed--and myself--do appreciate this open approach. 

--In general this method is most appropriate for young children--think 8 and under. The older the child (or adult) the less appropriate it is to be asking these questions in front of Lamp. Older children (and adults) should hopefully have a better grasp of boundaries.

--Sometimes it is appropriate to walk away with your child. If your child is really struggling to accept the idea that "they were just born that way" and they keep pointing, staring and saying rude things it's a good idea to apologize and walk away to have a more in depth conversation with your child out of ear shot. 

--Keep in mind that like most really important things in life this isn't a one time conversation! Which is the main reason I don't want children to feel shame for asking questions. If a child is shamed when they ask a question, they will soon learn not to ask questions. Which means they will loose out on really valuable lessons and conversations that need to take place. 

So there it is! I know these can be hard situations to navigate, for most of us special needs moms just seeing you try and make an effort will mean a lot to us. And it will be meaningful for your children as well. Remember the end goal is to bring down the walls created by ignorance and social stigma and allow for real bonds to be formed.  In a word, it's about friendship. I really hope you take the time to read, share and implement this with your kids. I hope you share it with your friends and family too.

Thank you so much for reading and, I don't usually ask this, but please share this post with family and friends! And lets have a fantastic school year together. 

XO 
Miggy


*For any newcomers please note that Lamp is not her real name, but rather an online alias I shamelessly cling to. 

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Friday, August 19, 2016

Special Needs Spotlight || Olivia




Our family of 5 live in Davenport, Iowa. Mike and I (Katy) have 3 girls. Bella just turned 9, Lexi will be 8 next week, and Olivia is 4 ½.We also have a bird Keyko and dog Bandit. At 7 months we found a fracture in Olivia’s left lower leg. After a few months they were finally able to tell us it was from Congenital psudoarthrosis of the fibula. Later we found out it’s a 1 in a million thing. That is why is was so hard to find anyone to even know what it was. Olivia also deals with lots of other things. She has a speech delay, has had 3 sets of ear tubes, had tonsils out, 4 leg surgeries, food and medicine allergies, seasonal allergies, asthma and breathing problems, over active bladder, and her newest thing is a rare condition in her “good” leg called Kolher’s. She goes to PT, pool therapy, speech and starting muscle training for the bladder problems. Olivia is about to start fulltime preschool next week where she loves to play with her friends. Even with everything going on she is a happy go lucky little girl. More info can be found on her facebook page “Leg up for Olivia.”
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Miggy: Hi Katy! Thank you so much for being here today and sharing your special needs journey with us. Can you take me back to the day you knew something wasn't quite right with your son/daughter? Was this before birth, immediately after, or sometime after that? If applicable, how long did it take you to get a diagnosis? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?
Katy: On a normal October day I was changing a diaper. After, I would pull Olivia up to stand when pulling her pants up. This one morning tho she would only stand on her right foot. After two trips to two different ER’s in over three days they found a fracture in her lower left leg. First they thought we hurt her, then it was a tumor and then they just didn’t know. After 6 months they were able to tell us it was congenital psudoarthrosis of the fibula. A one-in-a-million condition. At first I just wanted answers. After a while it was all about getting it to heal. Of course all the while we were dealing with her being sick all the time still. Now that she is healed she is still dealing with many other things. The newest is yet a new rare thing in her other foot--Kohler’s. We are just dealing with everything day-to-day.
Miggy: Please explain how Oliva’s needs affect your day-to-day life?  
                                                                       
Katy: We have therapy several times a week. As well as lots of other doctor visits. It’s hard to keep up with everything sometimes. How many different things she now has, if she is sick again or not, all the therapy and doctor appointments. My other two girls sometimes struggle with us having to deal with all Olivia’s stuff as well. The most recent is all the attention she gets. But they also love teaching others about everything Olivia deals with. I find teaching others about everything we have learned helps all of us with all that’s going on.
                               
Miggy: What are the biggest worries you face for Olivia? On the flip side, what are the hopes and dreams for Olivia?
Katy: Biggest worry is how she will deal with everything. She is so strong tho it doesn’t seem to bother her. I hope it’s the same in the long run.

My hopes for her are that she outgrow all her “problems”. That she ends up going into nursing, medical school or be an EMT like she wants. She has seen so much in her little life I’m sure she could help some with dealing everything they might be going through.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  
Katy: I love when Olivia starts talking about medical stuff. Everyone looks at us like how in the world does she know something like that. She also knows so much about her conditions that when others ask me about something about her she is likely able to answer it for me.
Miggy: How can people best approach or respond to Olivia? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Katy: I think the best thing in dealing with SN is to ask questions. Not everyone might feel this way but for us I love when someone asks. Then I can teach them more about whatever it is. Why does/did she need an AFO, cast or walker. The one thing I don’t like is when a mom tells her child to stop looking at Olivia or asking questions or whatever. I would rather them let the child come up to us and talk with us/ Olivia.

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to Olivia?
Katy: I love that my older girls know so much about what is going on with their sister. They are able to deal with it better I think then if we just told them she was sick. They know a lot about Olivia and what's going on. Even when they were 5 and 6 they were able to tell dad…. “she can’t have that remember, it has peanuts in it.” They watch out for her and help her (and me) as much as they can.


Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Katy: Take things one day at a time! Do your own research and don’t give up when everyone says there is nothing wrong when you know there is. You are the best advocate for your child.  

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Thank you Katy! One of the things I don't think most people think about when parenting a child who has special needs is time. The first year of Lamp's life was practically consumed with doctor appointments--specialists, clinics, therapy, surgery, follow-ups. The TIME spent trying to get your child they help they need can sometimes be overwhelming. I can understand why it is difficult for your other two children and I hope you get some respite soon. And a giant YES to your advise. Yes to doing your own research and yes to not giving up when you know something is going on. You mama's know more than you think. Thanks again Katy and big hugs to you and your family.

Thanks to everyone who tagged someone on my IG last Friday! I had a great response and am very excited to be sharing more stories in the following weeks. As always, please email me at thislittlemiggy at gmail dot com if you or someone you know would like to participate in the special needs spotlight.

Have a fantastic weekend!
XO
Miggy
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Monday, August 15, 2016

Anniversary Hike: Oneonta Falls

"Our understanding of love has been hijacked and beguiled by it's first distractingly moving moments. We have allowed our love stories to end way too early. We seem to know far too much about how love starts, and recklessly little about how it might continue." --The Course of Love by Alain De Botton

Marriage is hard and life is hard. But it is also beautiful, thrilling and amazing. Therefore it was only fitting that we spent our 11 year anniversary doing something hard, beautiful, thrilling and amazing as family. We hiked Oneonta Falls Gorge in Oregon. This hike, like marriage, was a dream come true. This hike, like marriage, was also difficult, scary, achingly beautiful and more than once I thought to myself, we're crazy for doing this. As it turns out, this hike was a living metaphor of our last 11 years of marriage. Allow me to elaborate.

See a week or two before our Oregon road trip I saw one of those 50 most beautiful places in the US with a photo of Oneonta Falls. I took a screenshot and that was it... I was all in baby! Which I liken to seeing photos of a gorgeous wedding day where it can seem like marriage is all about romance, similarities and a seamless transition of two lives into one. What's not desirable about that? But also, like marriage, I had my reservations--this hike was more than just a pretty photo op. Was it too dangerous? What about the kids? Would it be too much work? Should we just do it alone? Will it be worth the risk?

The more we looked into the hike the more apprehensive we became. First you have to climb over a giant log jam (which turned out to be bigger in person), you hike through water and at some point you even swim through a pool of water that is chest high when the water level is low. As an individual or a couple none of this is a big deal, but as a family this means that both B and I do all of this with a child strapped to our backs, while our oldest does it (mostly) alone. It reminds me of that Jim Gaffagin bit about having 5 kids... "What's it like to have 5 kids? Imagine that your drowning and then someone hands you a baby." What's it like to hike Oneonta falls as a family? Imagine you're climbing over giant logs that are slippery and wet with jagged rocks below and swimming through ice cold, chest deep water... and then someone straps a toddler to your back.

This conundrum, is me to the core. I want adventure and thrills but lets just take a second and write up a risk assessment spreadsheet with all foreseeable variables before we begin.

In the end we decided to drive up to Oneonta Falls, and if it looked too dangerous we'd turn back. We'll go only as far as we feel comfortable going, we told ourselves.

You guys, when B and I were engaged and I started to experience cold feet he asked me when I would know for sure and I said, "I don't know... but if I get to the temple that morning and I'm not feeling it, I won't go through with it."

Alrighty then! Not exactly the rock solid guarantee he was probably looking for, but being me and my I-want-it-all-but-holy-crap-that-sounds-scary-self it was as honest as I could be. 11 years to the day and my plan was exactly the same: drive up to the meeting place and if we felt good about it, then we would move forward. As I'm writing this I keep putting my hand to my forehead realizing what I must have put my poor husband through. Obviously, thankfully + wholeheartedly, we pushed forward on both accounts.

The morning before the hike was rough. I won't go into too much detail but one of our offspring was bring some major pre-hike attitude to the table. There was legit weeping, wailing and gnashing of teeth. This was our family in a low moment and I may or may not have also contributed to that low. It wasn't pretty. I didn't handle it well. (To be clear, I'm not making any comparisons to my wedding morning here. My feet were warm and ready to go.... all in baby.) And if I wasn't handling it well it probably goes without saying that said offspring wasn't handling it well either. And on that note we reluctantly made our way down to the mostly empty bottom river bed. Lesson #1. Circumstances in life are not always favorable, push forward anyway. There is beauty ahead.

Apparently there is more or less water depending on the time of year, we had less water at this time. The log jam is at the beginning of the hike so with Lamp on dad's back and Zuzu on mine, and PSP's capable climbing legs we got started. And once we started climbing I knew there was no going back. Once we committed, we committed, that that was it. I don't have great pictures of this part because this was not a stop and take pictures kind of climb. You need both hands and sure footing the entire time. But I did manage to get this one before we put the camera away.

Truth be told, it was dangerous. If I fell with Zuzu on my back she could have been hurt. Instinctively, I did what I always do when I feel afraid or troubled: I asked B if he would stay by me and hold my hand the entire time. And he did. I mean we were both in the exact same precarious situation with two of our favorite children on our backs, if either one of us slipped we could have pulled the other down with us. I recognized that asking for his steadiness while on the very same precarious platform is not the usual mode of safety. Ideally one person should be on sure footing when helping another person who is not on sure footing. But this is not marriage. Marriage requires great vulnerability of both parties and that vulnerability multiplies with children. Lesson #2: Marriage is walking through the perils of life together where the most steady thing you have to hang onto is each other...which isn't always that steady. But your life, and to a certain extent, your children's life depend on it.

Sidenote: One of the sweetest things through out the hike were the little encouraging comments Zuzu kept saying while on my back. "You so strong mommy! You can do it mom! Wow! You so strong!" With absolutely no prompting from anyone, her little encouragements were tender affirmations that kept prompting me on. Another parallel: my children are some of my biggest cheerleaders, teachers and encouragers.

Once we were safely over the log jam we were already in jaw-dropping gorgeousness and the words worth it... this is so worth it kept escaping our lips. The little dark cloud that had accompanied the beginning of our hike had evaporated with the morning mist. Nature wrung the bad vibes right out of us. Over the years, B and I have gotten much better at keeping a loose grip on our negative feelings. They slide more easily out of our fingers and we cling to the good more fiercely. That's a skill. And as I watched said offspring let those bad vibes drip away, I wanted to thank the gorge for giving her permission to let go and move on. I too find myself looking for beauty, humor, gratitude and love to fall into so I have permission to move on.

Not only did I carry a baby on my back, but at one point I carried my oldest over the water to avoid her feet getting wet. Not only did I feel physically stronger, but there is an emotional synergy at play as well. How many times do we carry our kids through the things they can't yet do themselves? A lot. I don't mean this as a point of pride or of boasting, it's a fulfillment of our responsibilities. And the benefits extend to both parties, parent and child. Lesson #3: Life is much more difficult with our kids and also so much more meaningful and worthwhile. Being a good parent isn't just for your child's benefit, it's for yours as well.

This was the point that we had to take the girls to the side, get them out of the backpacks while B carried each girl over the water on his shoulders one at a time. For B, the water was a little more than waist high, for me it went to the bottom of my sports bra and it was cold. At one point I looked up at the scenery while crossing through the chest deep cold water and said, it takes your breath away, and smiled at the double meaning. Lesson #4: Life isn't either/or, often it is and... beautiful and painful, scary and worthwhile, difficult and awesome. 


We made it. And it was everything we could want from an 11 year anniversary hike that was also a metaphor for marriage: holding on to each other for steadiness and strength, difficult and jaw-droopingly beautiful at the same time, more meaningful and more difficult with children, carrying our kids through the stuff they can't yet do on their own. That is exactly our past eleven years.

And if we're lucky, many more to come.
XO,
Miggy

p.s. Go read The Course of Love now
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