Parenting Disability

It was supposed to be peaceful Saturday. Almost Christmas. Not much left to do thanks to my amazing wife. We looked forward to a simple day. Time together, hanging out on the couch. A welcome and rare thing for us. That’s part of the deal when you have seven kids, not much downtime typically. We also looked forward to the Notre Dame football game that was set to begin at 4. We all look forward to the tradition or routine a football game brings to the day. I think we both love how excited our 3-year-old gets too. A little normalcy in a crazy life and crazy year.

Reality set in around noon. The crash of a large Pyrex bowl shattering as it hits the floor brings us back to reality. If something bad and unusual is going to happen, it is almost always going to involve the younger of the two 11-year-olds. Let’s call her Child 2. Glass was everywhere. We reacted perfectly. No big deal just an accident. I won’t let this “accident” mess up the day.

My wife and I go into cleanup mode. We are experts and a sight to behold. Get the little ones. Sweep it. Vacuum it. All set in a matter of minutes. We are incredibly efficient. We are very experienced. We will keep the peace. We will ignore the fact the bowl dropped because Child 2 was pissed we asked her to eat lunch. We have to encourage her to eat because she continues to lose weight. That’s over, all is good.

About 15 minutes later we must intervene between Child 2 and the other 11-year-old. Let’s call her Child 1. Child 2 has gotten her feelings hurt, again. Child 1 does this deliberately and far too often. We need to address this. Child 2 needs to know we have her back. It’s really hard to talk to Child 1 about these things though due to her trauma and maybe FAS. It tends to be very frustrating and we are unsure if she understands the pain she causes. It’s very difficult to know how to parent her. What words to use. What is the right amount of force and disappointment? How much follow-up reassurance is needed? Will this ever get easier? Will she ever feel like our child?

We made it through. It’s hard and stressful, but that is really relative. This is typical for our life, so we know how to grind through very difficult situations. We are still primed for a relaxing afternoon. Take a deep breath and move on.

Yes. We made it. 4pm. Game time. Bonus, the 1-year-old is down for a nap. Our 3-year-old is ready for the game. This does feel like a nice break from the day-to-day grind.

We are into the second quarter. The game isn’t going well for our team. I don’t really care. One of the few areas I’ve matured in over the years.

The doorbell rings. Ok no big deal. Probably the neighbor kids. Nope. Child 1 and Child 2 are screaming from the front door, IT’S THE NEIGHBORS. (Our neighbors are a great couple. They are a little older than us, their kids are long out of the house by now.). The screaming at the front door is a little embarrassing, but very much expected at this point.

I get up to answer the door. My wife is getting the 1-year-old up from her nap. Our neighbors are very nice. We aren’t close, but they have seen us outside many times this summer and we have talked on a number of occasions. They know we have a big family, and we have big challenges. They don’t understand the depth of the challenges, but they are aware of the issues. How thoughtful. They stopped by to bring us a Christmas card and homemade cinnamon rolls.

We are chatting in the doorway. It’s a little odd that both Child 1 and Child 2 are standing on our stairs inside the doorway while the adults talk. It’s not really surprising and I’ve learned it’s better to ignore than to say anything. All is going well.

We show our neighbors around the house a little. We have made a number of changes they were curious to see as they know the house well. Within 5 minutes of our neighbors coming in, our 9-year-old makes an appearance. Let’s call him Child 3.

When Child 3 makes an appearance, with company around or not, sirens go off around the house (not literally). We immediately move to DEFCON 3, maybe 4. With company of any kind, family, neighbors, or neighbor kids, we go directly to DEFCON 5. My wife and I seem to have developed hypersensitive sensors in our brains that help us navigate when he is around. The only question we have now is how crazy will this get? There is no hope for a reasonably normal interaction. There is nothing left to do but pray – pray no one gets hurt and we aren’t too embarrassed when all is said and done. It’s kind of like watching a funny (or sad) tv show and we are the stars. Buckle up!

He’s clearly ramped. The standard 0-100 mph is less than a second. My wife and the neighbor lady are in the dining room, while the neighbor guy and myself are in the living room. In just a couple minutes he gets his hands on a spray bottle. He sprays everyone in sight. Luckily, he misses the neighbor lady. I’m still in the living room listening intently while still trying to appear engaged in our conversation. I’m waiting for my wife’s call to intervene. Wait, what is that noise?

Why the hell is someone emptying ice cube trays right now? This was clearly not a visit where a drink needed to be offered to our guest. Immediately my mind runs through the standard scenarios. Who could be doing this at such an inappropriate time and within a couple feet of where my wife and neighbor are standing? Child 3 is not capable of emptying the ice cube trays. It’s only Child 1 that would do something like this. Why would she be doing it now? It’s actually very simple. Anything new is the best thing that’s ever happened to her. She can’t miss a minute. Four adults shooting the shit is amazing.

Child 3 has moved to eating. At his last psych visit, I heard a new term – hunger aggression. Why wouldn’t he have that too. He gets an apple sauce. He’s a gentlemen’s so he offers one to our 1-year- old and one to the neighbor lady as well. She politely declines.

The apple sauce goes down smooth, just like that shot of whiskey I desperately want to dull this pain. I work my way into the dining room area to try to better monitor the situation. I’m just in time to hear him tell our neighbors how he doesn’t sleep at night and sneaks down and steals things. Both comments are accurate, so how can I be mad?

Now he’s found a large red bouncy ball (thanks grandpa for winning that damn thing). He is running around the dining room table like a maniac. The sounds coming out of him are unworldly. The chaos is reaching a tipping point it seems. Luckily Child 3 disappears. Where did he go? I’m not sure, but we are moving in the right direction.

Child 1 is now summoning me from upstairs. She tells me Child 3 is using the spray bottle to spray the walls upstairs. I apologize to the neighbors and excuse myself. I don’t think they understand this apology. This one is meant to be a blank check. I’m sorry for everything that has happened and everything that is about to happen. It’s also a signal for them to leave.

The most poignant moment happened around this time. The neighbors were telling us they were headed to their friend’s house after this visit. My wife instinctively turns to me and says, “wouldn’t it be nice if we could have friends?”. I instinctively respond with a yeah, that isn’t going to happen anytime soon. We can see this statement catches the neighbors off guard. My wife immediately begins to explain our situation in a little more detail, so they can better understand why she would say such a thing. We like when people have some understanding of how the disabilities our children face feel like they turn our home into a prison. The locks on every door and most cabinets help to hammer home the point.

We rarely say things like this out loud. It catches us both off guard later in the night. It’s a brutal truth we choose to not speak into the world most of the time. We generally keep those thoughts private. Locked down between her and I. More than anything I think it’s a survival technique that we have mastered.

I head upstairs to deal with Child 3. I’ve learned over the years that trying to take the spray bottle away immediately would be a catastrophic mistake. We distract and pray. Communicating with him sometimes requires a special language and always require insane amounts of patience. I’m lucky tonight. I get the spray bottle away from him after lots of communication about random apps he likes. Most important he is not mad. Everything is ok. I head back down and try to pretend I’m a normal adult.

I find the group in the basement chatting. This seems good. Normal. Just the two little ones and the adults. Totally normal. We are shooting the shit about plowing the driveway. Will I do it myself? Hire someone? Hey who mows your yard? This I what normal adults do right? Just then Child 2 sprints down the stairs to tell me Child 3 is threatening to throw his iPad (most prized possession) and himself over the upstairs railing. It is unclear what order he was planning on. I very quickly apologize again, for everything, and run back upstairs to what feels like my second full-time job.

He quickly informs me he does not want his iPad anymore. I remind him we played this game several days ago. He didn’t want the iPad and within minutes he came out asking for it again. His brain is so messed up, it’s painful to watch. Reason never works, so I am forced to take the iPad with me.

I’m not dumb though and I do not want him back downstairs. I stand outside of his door with the iPad and tell myself to give him five minutes. If he doesn’t come out, I will head back down. In less than two minutes he pops out asking for the iPad. I hand it over and say one more prayer – please don’t come out of your room again. His brain should be studied. Will this nightmare just end?

I head back downstairs and realize the neighbors are gone. Thank God! Emotions now are allowed to be felt. Our heads are spinning. Our two neighbors coming over to say Merry Christmas turn our house into total chaos – immediately! They were here for maybe 15 minutes, but it felt like hours. Each of the adopted kids put their disabilities on full display in a very short amount of time. It is really hard to see and believe. I promise it is much harder to live with each day (for them and us).

My wife and I decompress after the kids are in bed. We deal with the stress and sadness. We are reminded of many things. This is why we rarely leave the house. This is why there is stress around every interaction with people. This is why we have few friends that “know” us and certainly none that come to the house. We are reminded why we have so many rules and so much structure. It’s also a reminder why we fight like hell to keep the peace. It’s also a reminder that every time we let our guard down, we are disappointed.

I feel all kinds of emotions tonight. I feel anger and lots of it. I’m not ashamed of this anger. I feel sadness. Sadness for how limited our lives have become. Sadness that having people over and leaving the house is something I don’t look forward to. Sadness that literally anything outside of our very restricted normal will fuck up the day in a major way.

I’m also sad that these kids struggle in the most normal of situations. It’s hard to see their future and have anything but anxiety and fear. There is not much they won’t struggle with every day for the rest of their lives. This reality always is starring us in the face. We are pretty good at ignoring it most of the time.

I feel stress. I feel exhausted. I’m tired of having to be on all the time. There are no breaks from this kind of parenting.

I’m committed to finding my win though. There are always wins. Today it’s actually easy to find those wins. I spent quality time with my wife and little ones and that is always amazing. I put my 3-year-old to bed tonight, which was such a sweet experience. I will miss them when I get older. I chose to get a little cardio in as well, which is always something good for me mentally.

As I type, my wife is snuggled up to me on the couch sleeping soundly. Days like today take a major toll on us. Sleep helps! We both enjoy the peace of her falling asleep on me on our couch. I know we will be ready to attack another day tomorrow. I also know it won’t be easy. In about ten minutes, we will go to bed, together. We always go to bed together. Our bed is our safe place, our place of peace. Going to bed together every night, together is something we look forward to and will always fight to protect. No matter what bullshit goes down during the day, and there is often a ton of it, we always go to bed together. Together we can get through this and live an amazing life. We know we have each other’s backs. We also know that our love is unmovable. There is no amount of chaos that can close in on us that affect how we feel about one another. We take great comfort in that strength. When we have days like this, I think of “our song”. Jack Johnson’s “I Got You”, and specifically these lines:

This weight’s too much alone
Some days I can’t hold it at all
You take it on for me
When tomorrow’s too much
I’ll carry it all
I Got You
And when tomorrow’s too much
I’ll carry it all
I Got You

We will find a way to win tomorrow too!

Should We Be Grateful For COVID?

There is no doubt that COVID has wreaked havoc throughout the world. It has killed more than a million people worldwide, disrupted or ended businesses, forced many into unemployment, and stole some of the peace of mind we have worked so hard to build in our day to day lives.

COVID is clearly a human tragedy and I feel for everyone impacted in a material way by the virus. My family has been largely unaffected by COVID and we do not take that fact for granted. Sure we have had to sacrifice like everyone else. We had to give up extended family Thanksgiving and are trying to figure out Christmas. Those seem inconsequential in the grand scheme of things though. I still have my job. We have a warm home and food. I don’t know anyone that has gotten seriously ill or died from the virus. I guess the most significant issue we have faced is having our kids home for school for the majority of the year. That is a major challenge for our kids with special needs, but we are surviving it and again in the grand scheme of things it isn’t that big of a deal.

As I thought about COVID’s impact on me personally, I came to many realizations. The main takeaway was that there were many things that were better as a result of COVID. I thought I would share some of these as we are all bracing for what is to come over the next three to six months.

Kids – With school being virtual most of the year, the kids are around more. This has certainly created challenges in our home, but it has also led to countless interactions that would have not happened otherwise. The random chats in the kitchen or my office during the work/school day would never have happened. I already feel how much I will miss those when things return to “normal”.

Lessons – There have been many opportunities to teach lessons due to COVID. Life is not fair! Life will never be fair! Bad shit happens. You miss out on opportunities. Reality does not always meet expectations. But you know what, life goes on. Own the reality and move forward as best you can. There is no time to worry about the past as it is long gone. There is no time for the what if’s that are so easy to dwell on. Life is too short! There is another hard truth – no one else really cares about what you missed out on. They are dealing with their own shit.

Beyond You – COVID has been a great opportunity to hammer home the importance of thinking beyond yourself. Wear a mask to protect your loved ones, your friends, and those that you may come in contact with first. Protecting yourself is a byproduct of protecting those around you. Helping more around the house and with the normal chores of everyday life. Lessons can be taught about how to be selfless and to put others first.

Parents are Human – COVID has allowed my wife and I to show our children that parents are human too. We face many difficult decisions as adults. Some of these decisions require much discussion and thought and even after all that talking and thinking they are still a challenge. COVID has helped us show our children that parents are people too and not everything comes easy to us. I hope letting them see our decision-making processes and being open about how we arrive at decisions serve them well as they move toward adulthood.

Priorities – Due to the limited availability of external activities and distractions we have been forced to look internal and really figure out what makes us happy (and not). If we really take the time to look hard at our feelings during this pandemic, we may be able to make great progress towards pursuing and doing the things that truly make us happy. More importantly, it may allow you to let go of the gimmicks that really don’t bring any happiness at all.

Home – Our hand was ultimately forced to move to a new home. We didn’t need to, but the size of our family and the constantly growing needs was becoming a challenge for us. We were very fortunate to find a home that is probably as close to perfect for us as we will ever find. We couldn’t be happier to have made this move.

Realization – Life is not hard. I’ve been forced to think about what we are living through now and other significant events in our history. Doing so makes it very easy to realize that what we are going through is minor compared to other events in history (World Wars, Disease, etc.). Our sacrifices are minimal at best compared to those made previously. The majority in this country are blessed with comforts that generations before us could not have fathomed, not to mention those born in other countries. We have built cocoons for ourselves that are very hard to penetrate. We are blessed to expect full cupboards, full gas tanks, and access to the very best care – on demand – all the time. The lives most of us lead in this country are not close to difficult. Any difficulties we may face are almost always self-inflicted.

Politics – COVID has shined a spotlight on politics and how disruptive and degenerative they can be. Politicians are men and women. They are flawed, self-interested, and deserve no more respect or admiration than the stranger you see walking down the street. We would all be very well served to rethink our affiliations and who we attach ourselves to.

Work – COVID forced me into a new role at work. One that was more public, on the front lines so to speak. I ended up being the main participant in nearly 50 webinars, 30 videos, and wrote 50 blog posts in about 6 months. Before COVID I had done 0, 0 and 0, respectively. This significant change was exactly what I needed. Feeling value doing something that takes up so many hours each day is absolutely essential. It’s elusive for many and had been for me for many years. COVID has helped me get in my “right seat”. I am very grateful for that.

Health – During this time, my belief that health is our most important asset has only grown. Being healthy in all ways, mentally, emotionally, and physically could not be more important. A healthy person can get through anything. Health, like anything else of value, must be worked on everyday. That work is not easy and it shouldn’t be. The value and improvements you make through that hard work are also not always easy to see or measure. The cost of poor health is very easy to see though. The price you pay only gets more costly as you grow older.

My focus or mantra these days is “find your win”. You don’t need to win the whole day. You need to find your win each day. It’s always there. Some days it will be obvious. Some days are a mindfuck (especially if you live in this house – see my older posts) and you have to search harder. Find it. Focus on it. Build off of it. Little wins build momentum. Positive momentum leads to easier wins tomorrow.

As I close this blog post, I head off to exercise. I will face something difficult and challenging – on purpose. At the end of the next 60 minutes or so, I will have won the hour. No matter what happens the rest of the day I have a win that cannot be taken away from me. Of equal importance is the fact that this win will help me win the next hour and the hour after that.

Go find your win!

Parenting in a FAS World

Featured

It’s been a long time since I posted about our life parenting two kids with FAS and one with severe trauma. Honestly, I was simply wore out. I didn’t have the energy to write about it or even think too much about it. The day to day grind of it all was more than enough. Certainly, COVID didn’t help. It was absolutely exhausting.

It’s exhausting in so many ways, often times in ways that can be very hard to put words to. Some of the exhaustion is how few people can actually relate to what it is like to try to navigate parenting in this extreme environment. I don’t blame them, it’s very difficult to understand or relate if you haven’t experienced the things someone else has experienced. I don’t know anyone that has a child that is a flight risk at all times (many times for reasons that aren’t obvious), or a child that has made numerous death threats to other family members (how do you process that?), or a child that may simply prefer not to be part of this family.

The other challenging part we face is it isn’t easy to receive help. That may not make sense to most people that read this. We can’t simply get a babysitter for an hour or two. Often, we can’t even have family help us unless the situation is just right. We are so appreciative of all the help we do get, but the amount of effort that goes into planning and communicating is overwhelming. Not to mention watching and waiting for the text message or phone call to come that asks us to get home because something is up. I totally get why it is hard to understand why the stars must be aligned for things to go well. I know it’s also hard to understand why the kids don’t always enjoy normal kid activities and many times if things aren’t perfect or something changes unexpectedly things get off the rails immediately. I feel bad about this for those that help us. It probably doesn’t feel good and I’m sure is confusing.

I’m not a musical person, but I love music. That’s not totally accurate, I love lyrics. I’m sure I’m not alone in loving lyrics I can relate to. Lyrics that help to make sense of life and help you hold on to some hope that you are not alone in whatever you are feeling. I heard a song the other day that I’ve listened to hundreds of times before. But on this day, it spoke to me in a different way. I felt as if it was speaking about all the things my wife and I feel raising our three adopted, brain damaged, and traumatized kids.

I’ve loved the Counting Crows for what must be 25 years now. I love the lyrics that make up their songs. The song that spoke to me the other day is called “Mrs. Potter’s Lullaby”. The song is like one big metaphor for the life we as parents live with these challenging kids. I bet it will ring true for those in a similar situation and hopefully will help shed light on what it is like to raise challenging kids for everyone else.

“Well, I am an idiot walking a tightrope of fortune and fame. I am an acrobat swinging trapezes through circles of flame”.

This parenting life is a tightrope. One that I have not walked in any other part of my life. You end up humbled most days by just how little you know. How important the brain is and how so much of who we are develops before we can even talk. Sadly, there is no fortune and fame to be found in this life. All there are is small wins that most wouldn’t recognize as wins at all. These tiny wins are so hard to hold onto. Many days feel like we are doing something extremely dangerous, we are holding on for dear life, and there is no safety net. You can’t train for this experience.

“If you’ve never stared off in the distance, then your life is a shame
And though I’ll never forget your face,
sometimes I can’t remember my name”.

Personally, I have to be very careful not to stare off I to the distance. I can’t give too much thought to the reality of the situation, the near future, the long-term future, what could have been or what should have been. Those are dangerous thoughts. Sometimes when tough days stack up on one another it is hard to remember what normal is. Sometimes it can be hard to remember who I am without the stress in my life. The effort never stops.

“And there is always one last light to turn out and one last bell to ring; And the last one out of the circus has to lock up everything; Or the elephants will get out and forget to remember what you said“.

These lines sum of nicely how dialed in you have to be as a parent to these kids – at all times! If you let your guard down all hell is bound to break loose. Plan for the worst and pray for something better than that. Yes, you pray for it, you don’t expect something better because you will be let down. It takes a long time to break a parent of that hope. The hope that your child will make a better choice next time or the time after that. Those are hard realizations that I think most parents don’t have to experience. You can read about some of those experiences in my past posts (I’ll link them below). I could write several more blog posts about crazy things that have happened just since we moved into a new house several months ago. We’ve made a million mistakes and try our best to learn from them all.

Our new house has more space. We were in desperate need of more space. We needed bedrooms and we needed bathrooms. We needed more space! We were very fortunate to find a house and location that fits us very well. Nothing is perfect though and we found we still didn’t get it totally right. We ended up changing around bedrooms once already to keep the peace. Every time we think we have something figured out we are brought back to reality very quickly. I think sometimes we think age (11, almost 11 and 9) will make things easier. It doesn’t. And unfortunately, I think it will continue to make it harder.

Speaking of locking the doors, we lock everything. We have locked all kinds of things. Doors, cabinets, our freezer and on and on. We lock up cabinets that we keep food in. We lock up access to certain bedrooms, my office and the basement. The basement is an important one because if we don’t thing go missing really fast and you are bound to find a kid down there watching TV all night. There isn’t much in our house that doesn’t require a password. Sometimes it can feel like a prison, but it keeps things under control and is an easy trade off considering what the alternative looks like.

All the razor perceptions that cut just a little too deep
Hey I can bleed as well as anyone, but I need someone to help me sleep.

I’m all over the place on the lines above. Those razor perceptions or judgements that go along with raising any kids, but especially challenging kids is an interesting space to live in. My personality generally lends itself to not caring about anyone’s opinions. Sometimes though it gets to me and I want to sit people down and explain everything we live with. Give me several hours to bend your ear before suggesting things seem to be getting better or we should try this or that. I understand that comments and suggestions are well intended, but they miss the mark every single time.

“So I throw my hand into the air and it swims in the beams; It’s just a brief interruption of the swirling dust sparkle jet stream; Well, I know I don’t know you and you’re probably not what you seem”.

We carry sadness of realizing we will never really know who our kids were supposed to be. They were taken from us before they were born, never to return. We will do everything we can to help them live their best lives, but these lives aren’t what they should have been. They shouldn’t be this hard. They deserved better.

“When the last king of Hollywood shatters his glass on the floor; And orders another. well, I wonder what he did that for“.

I think my wife and I feel these lines most often. The “is this real” moment. These lines represent the uncertainty we live with every day. The 0-100 escalations in a blink of an eye. The unusual and unpredictable behavior. The stories we could tell. The sadness we’ve felt. It can be a lot.

That’s when I know that I have to get out cause; I have been there before”.

These two lines are exactly who my wife and I are not. We won’t get out, we don’t want to get out, but we most certainly have been here many times before and will be here many times again. We will continue to show up. We will continue to mess this up. We will pick ourselves up. There is no other way. We will be better than yesterday!

You can see a million miles tonight
But you can’t get very far

These two lines are really sad. I think parents with challenging kids face these thoughts. Knowing the whole world is out there to explore, but you can’t leave the house (sometimes even for simple things). Knowing what they will never be able to do or experience. Knowing you will never have that full relationship with them. It’s especially hard when you have neurotypical kids and you see all the promise, the complete lack of any limitations on them.

You can never escape, you can only move south down the coast

I went through the song as it was written, except for the line above. This line is near the beginning, but I want to use it to close. It explains very well what really good parents of these challenging kids do. Good parents are those that try, those that do not give up even with the odds are against you. They are the ones that realize that they have to move with their kids. They realize they need to meet them where they are today and that tomorrow they probably aren’t in that same place. It’s not easy, sometimes they are hard to find. Sometimes they don’t want to be found. There are many potholes, traffic jams and accidents along the way, but you keep moving. You have to find what works and more importantly in this world find what doesn’t. You have to accommodate as best you can, but more than anything you have to keep moving. Isn’t that what life is all about anyway?

https://yougotnocontrol.com/2020/01/26/this-is-fas-part-ii/

https://yougotnocontrol.com/2020/02/02/this-is-fas/

https://yougotnocontrol.com/2020/02/11/fas-the-chase/

Getting Started – My Life, the Short Version

I have been curious about blogging for some time now. Getting things that bounce around my head all day on “paper” seems beneficial – even if it’s just for my sanity.

I also think blogging, and social media generally, could be a nice add-on from a parenting perspective. Don’t misunderstand me, I think parenting should be face to face 99.9% of the time. But I think we should consider the impact that social media and technology has on all of us, especially our kids. It seems foolish not to take advantage of another way of potentially reaching our kids and young adults. Maybe there is an impact, maybe there isn’t – I don’t think it hurts to get in front of our children any way possible.

Ok – let’s begin with some context.

The serenity prayer hangs on the wall of my office. It hung in my wife’s grandmother’s home for many , many years. I think my wife knew the words in that frame would come to define how we live our lives and that I had to embrace them to find real happiness.

Living those words each day is my goal. More often than not I fail. I hate that I simply can’t flip a switch and live them each day, I am proud that regardless of what went on yesterday, I get up and try again. Let me give a little context about why those framed words resonate so much with me and our family.

My wife and I have seven (YES 7!) kids. Nothing about how we got here is normal. We didn’t set out to have a big family. We have a big family because we chose each other and never looked back. Let’s do the math on this:

I have two kids from a previous marriage. They are in high school and middle school. They are exceptional people. When I thought about being a parent I never dreamed it could be this good. I’m consistently proud of who they are as people. They are kind and amazing with our younger kids. Watching those relationships develop has been really rewarding. They make me think I’m not screwing it all up – and some days I need that feeling.

My wife adopted three kids while she was single (after we married I adopted them as well). They are all very close in age. Two are in elementary school. The other unfortunately can’t attend school at this time (we’ve tried many options at this point with no success). Two of the three are biological siblings and have Fetal Alcohol Syndrome (FAS). Most people I know don’t know what FAS is (I certainly didn’t), so talking about it with others can be difficult. I find myself hesitating to answer questions about them because I feel like I need to give enough context to help it make sense for people. It’s been a major struggle for me. I’ll get into the reality of FAS in other posts because I do think those dealing with it or similar disabilities need as many people as possible to relate to. Raising kids with FAS is easily the hardest thing I’ve ever had to do. The non-biological sibling doesn’t present with FAS signs, but based on the environment she came from, it isn’t out of the question. She has significant emotional trauma and attachment related issues. Honestly, with where we are today, it is hard to believe I’m typing this, but navigating how to raise her may be harder than the two with FAS.

I find myself feeling overwhelming sadness for them at times. I think it happens more now as they age and fall further and further behind peers. I think it’s also because lots of the emotional trauma they’ve experienced in the past is being processed by me with a slightly more mature mind.

They have a ton of issues and likely won’t lead anywhere near a “normal” life. My anger at that reality likely won’t ever end. They will live these lives simply because their biological parents made horrific decisions. These kids had no control, no choice in the matter. I see now after a lot of thought that their biological parents didn’t have a chance either – its a never ending cycle of bad decisions that have ramifications that last generations. I have very strong opinions on what can be done to solve some of these problems, but I’ll save that for another post.

All that said, they all have unique personalities, things they enjoy and things they can’t really tolerate. More than anything, they have a ton of good in them. It’s not always obvious and sometimes you really have to look hard, but it’s there.

Finally, my wife and I have two little girls. The older of the two is absolutely amazing. She is a fun, independent ball of energy. A day doesn’t go by when she doesn’t amaze me with the words she uses or what she is able to do on her own. Our littlest is just a baby and going through the phase where there are smiles and more awareness of her world – we can’t wait to see her personality develop.

That’s my immediate family. It’s fun. It’s almost always crazy. It really, really hard at times. I’m not sure it could be more complex – blended, adoption, biological, and disability – that’s a lot. And I guess something that never really comes up, but throw race in there too.

I think my wife and I are pretty damn good at it though. It’s not easy navigating all of it. The wide age gap in kids, the needs (including significant special needs), logistics, and just all the stuff that comes with a large family.

My wife and I define success based on the love in our home and the safety that each of our (7!) kids feels every day. I think we are succeeding. Regardless, I know we show up every day and try – that is really what life is about – you have to put in the effort.

We are showing them every day, through all the ups and downs what a family really is. I’m grateful to be able to witness all the wins and all the losses each day and know we are growing together.

Oh yeah, I also am an executive at a venture-backed start-up with headquarters in another state (which means I have to travel from time to time). More on that part of life later.

#accountability #ivegot2more #endure #grind #7kids #fetalalcoholsyndrome #blendedfamily #noexcuses