Everyone has a story, here is some of ours

I turned 36 last week.

If you were to ask me 5 years ago where I thought I’d be in life right now, well, let’s just say, I’d probably say the exact opposite of where my life is now. Isn’t that the case in so many of our lives though? We have plans or ideas of what life will look like, but we never really expect those life changing events, the trauma, or even the great things that can change our lives drastically.

When I was 31 years old, me and my husband, Ben, had 2 very sweet and easy little boys, we owned our home and had 1.5 acres with 360 degree mountain views in Montana. I was a teacher and Ben was a highway patrolman (aka state trooper). We had humble, yet good jobs that we both loved. We traveled a few times a year with our boys and went on fun adventures often. Looking back, life was easy. It definitely didn’t always feel easy at the time. That’s the thing about life, it can seem to look better and easier in hindsight. We struggled financially a few times back when I was a stay at home Mom and Ben was the only one making the money. Most of our arguments were about money, but we always ended up being ok and figuring it all out.

Life was not hard. I repeat, life was not hard.

Although, I’m sure that I did, in fact, complain that “life was so hard!” sometimes.

*Montana is truly so beautiful.. and oh ya, we had a dog too*

If you asked me then what I thought life would look like in 5 years, I would’ve told you that maybe, just maybe, we’d have a third child. That I would figure out how to still teach part time, and then pick it up again full time when our third child was preschool age. I would’ve told you that there is a slight chance we would be living in Massachusetts, because for the longest time I wanted a chance to live closer to my side of the family. I would’ve told you that, you know, I’m not really sure actually, but Ben would still be a police officer and we would maybe be a family of 5, MAX.

Well here we are 5 years later, and life sure looks a lot different than it did. Ben’s career was taken from him after almost 10 years of outstanding service. Wow, never saw that one coming! To say there was so much pain and confusion would be an understatement.

You know what else we didn’t see coming? My pregnancy with TWINS!

It was at this point that we knew it might be time to finally make the move to Massachusetts. To see what was out there… have some helping hands and supporters to help me with the kiddos, aka my Mom.

Fast forward, we are now living in one of the most expensive states known to man, we have 4 boys now, and we are living life as special needs parents. Yup, the up-side of living near Boston is that it is home to the best Children’s hospital in the nation. Those smarties up there gave us some answers that we didn’t necessarily want to hear. Our oldest, Liam (10 yrs old), and one of our twins, Oliver (2 yrs), have a rare degenerative neurological disease called MPS III, or Sanfilippo Syndrome. It’s terminal, not like at the airport, as in.. it always causes death. No cure or treatment either.. awesome.

After going through all the stages of grief and mourning basically, we are now at a point where we have accepted this new life and want to live it the best we can. I no longer teach because I cannot have a full time job. Liam (and of course my other children) is my full time job now. Once an easy and very sweet boy, Liam now needs 24/7 hands-on supervision, and will throw a ceramic vase at your head or give you some nice scratch marks on occasion. This disease is brutal, it is very similar to dementia… only worse. He is still sweet though, still very sweet.

So we have adjusted everything in our lives to accommodate for this. It will get worse, so we try to take nothing for granted, and appreciate every good moment right now in this present time.

Oliver is still young and not quite affected by this disease too much yet. (I try to not let my mind go to what his future will probably look like) Having 2 year old twins is the cutest and the craziest. We love them so dearly and are so grateful they joined us.

My stress level is significantly higher, but they are more than totally worth it!

It’s funny how it worked out relationally in our family. Liam and Oliver, the Sanfilippo warriors of the family, have such a special bond. They comfort each other when they are upset, and they love to just sit together while watching their favorite preschool TV shows. They are very similar as well; when Liam was Oliver’s age his chill, easy-going personality was quite the same.

Then Tobey, Oliver’s twin, has quite the special bond with our second oldest, Tucker. They like all the same things and Tobey is constantly trying to act Tucker’s age (8) and do all the things that Tucker does. All of this is very sweet to watch.

I am also grateful that Tucker still has a playmate. Liam and Tucker were always the best of friends, and did everything together. Until Tucker surpassed his older brother, Liam, cognitively by leaps and bounds. Liam has also somewhat lost his imagination, so he doesn’t know how to play with action figures or play pretend. So play in general is hard for him. Sanfilippo took away Tucker’s playmate. But Tobey loves to play with Tucker and vice versa (even with the age gap) and I know that in itself is a special gift from God.

God. He is very much a part of our story. It could be easy to blame God for all of this. But I know God, I know that He loves me, loves us, more than we can even fathom or understand. Yes, He is letting us walk through rough waters, but He hasn’t left our side. I could never do this life without Him. I think I really see that now, more so than I ever have. Life throws some punches to the gut for everyone. God lets us walk through the crap, but always has our back and is walking through it with us; He will never let us down. He is the go-to, the place where we can draw our strength when we desperately need it.

I can see all God’s little blessings every where I turn in my life. I could give so many examples, including the people God put in our lives to the little and big gifts He’s given us so many times. It’s as if He is saying I know the big stuff in life is hard right now, but I care more than you know, and I’m going to make it a little easier by sending you little blessings every day…. but you have to look for them. That’s the key, look for the blessings. It can be super easy to focus on the big bad stuff in life; it can haunt us, make us depressed, anxious, you name it. But when I focus on the positives, it gives me peace and helps me remember I’m not alone. God cares. He died to show us that.

I live one day at a time now, moment by moment even. Some of those days are an absolute trainwreck. Some of those days go well, and some moments are pure treasures. If you asked me today what my life will look like in 5 years from now, I’d tell you I don’t even know what tomorrow holds nevermind the future, but…. wait for it….. I know WHO holds the future.

For more info on Sanfilippo Syndrome, please visit here: https://curesanfilippofoundation.org/what-is-sanfilippo/

and here: https://curesanfilippofoundation.org/meet-the-families/oliver-liam/

Dangerous Thinking