Through The Rose Colored Looking Glass



Social media can be such a blessing. A way in which to keep up with people in your life, to find and rebuild relationships with people who use to be, and to connect with people who are walking a similar path in life that you may have never found otherwise.

It can also be a curse. A measuring stick by which you deem whether or not you’re successful, or a good parent, or your life is “on track” in comparison to other people you know.

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Think of a wonderful thought, any happy little thought…

Two months.

 It has been two months since the day that the lives we had known came to an abrupt and shattering stop.

Learning to live and find a new normal without Landon has been the hardest thing we’ve ever done. Knowing that his beautiful smile and infectious laugh are now only a memory leaves an emptiness that there aren’t words for.

The holidays are coming. The first holidays as a family of four instead of a family of five. Christmas shopping for two boys instead of three. Behind everything we do and everything we have to look forward to is the reminder that everything is different now. That no matter what happiness comes, in the back of my mind a voice inside will be whispering, “I wish he was here,” or “He would have loved this.”

And learning to balance the pain of knowing that everything is different and finding happiness in what we still have has been my internal struggle for two months now.

I refuse to give up. I will not let this disease win. It cannot have everything. Sanfilippo stole my son, literally like a thief in the night, and it will strike again. It will take Blake and we, as the people who love him most, are powerless to stop it.
But I do have the power to say it cannot have it all. It will not steal all our happiness. It can never take away the memories, the love, and it will not take away my ability to continuing creating happiness and memories with Blake and Gabriel. Because if we give up and let the grief overshadow everything else, then it was all for naught. If I don’t continue, then Landon’s memory, his legacy, and his spirit do not continue either, and that is not an option.

And so, around the one month mark of losing Landon, I made myself a promise. I promised myself that every single day, I would make a conscious effort to find something that brought me happiness or made me smile, even if the only thing I could find that day was “today I didn’t lie down and give up. Today I got out of bed even though I didn’t want to.”

And today I would like to share the thing that makes me smile. 

They say it takes a village to raise a child. This is especially true in the world of special needs parenting.

And Landon’s village was nothing short of miraculous. He had a large and diverse family that was supportive every step of the way. Through the years of his life, every member has stepped up to be there, and helped us to give Landon a life that only knew tolerance and unconditional love. It was not always easy, but we always made it through together and no matter how dark things got at times, we always found something to smile and laugh about later. 

My parents, who helped us through the hardest of times, who provided our second and sometimes our only home. My sister, who moved into our house and helped me raised the boys when I had nothing and no one, and my brother who patiently let his space be constantly invaded and who had to grow up especially quickly as a result of having to accept difficult realities at a young age, we worked together as a functioning unit to make sure Landon wanted for nothing. I could never thank you enough for always, always being there. And not because you had to be but because you wanted to be. I could not have done any of it without you. 

When Shawn and I first went our separate ways, learning what it meant to co-parent in a way that always put the boys first was difficult. In time, we found a balance and I can honestly say that I am proud of the place we have gotten to in being a team that had the common goal of making sure the boys were happy. To make sure that every decision we made, no matter how big or small, was made with the singular purpose of doing what’s best for them, no matter what that meant for us.

And that’s just the tip of the iceberg. 

When Jordan came into our lives, he brought with him not only his own unconditional love and support, but also his entire family. A family that looked at all our broken pieces and hardships and loved us anyway like we had belonged to them always. It will always amaze me that someone could come from outside and CHOSE to love us, to be part of the journey, and do it with hearts filled with compassion and genuine love and support. I can’t adequately express my deep admiration or love for the miracle that is Jordan. He helped me to become the best version of myself and always pushed me to see good. He kept me strong and kept me sane, and I absolutely couldn’t be what I am today without him. 

The Bergsruds. Landon’s godparents and a set of grandparents that he chose. I know without a doubt that some of Landon’s happiest days were spent with Dale and Marilyn. They were always there, sometimes when I had no one else, and they did it from a place of love. Thank you for loving Landon and giving him so much happiness. You will always be a part of our family. 

Jann Belanus. Without you, God only knows how long it would have taken to get answers. You are our guardian angel, and for all intents and purpose, a second mother to me. Thank you for always being there and reminding me that I could do this. I know there are times that without you, I couldn’t have. Thank you for always seeing the best in Landon, and in me, and reminding me of those things when life seemed too difficult.

And then there’s Landon’s second family. His school family. Letting Landon go away to school at The Anne Carlsen Center was the most heart wrenching decision we ever made. Letting go and letting him live the fullest life he could was agonizing for a long time. There is no doubt in my mind though, that it was also the best decision we ever made for him.

Because of his time at Anne Carlsen and the amazing people there, Landon was able to learn things we never thought possible and have so many experiences that would have never been possible had he not gone.

There are so many people that contributed to his success and happiness at school that I could write an entire novel thanking them, but please know:

I am thankful for each and every one of you. You loved our boy like he was your own. You were personally invested in his success and happiness. You helped us raise that amazing child and you helped us fill his life with everything he could have ever dreamed of. Thank you, for everything. We will NEVER forget you. 

And so, even though today is a sad day, a day marked by 2 months of being without a piece of my heart, I will choose to be happy.

 I will be happy about all the lives Landon touched, and about all the beautiful support I am so fortunate to have. And today, that is enough. 

Down The Rabbit Hole

rabbit hole

It has been quite sometime since I blogged. So much has been packed into the last few months, and I have yet to blog about Landon’s fantastic trip to Disney World, which as I said, was fantastic and memorable in every way. But right now, my mind isn’t in a place to do that entry justice. My mind is in a place that I desperately want out of.

This year has gotten off to a rough start for our MPS community. In the first 19 days, we have lost 2 boys, another is fighting for his life, and a beautiful young lady may have just had her last birthday on Earth, as her body is tired and nearing the end of its fight. As parents of these children, I know that we all take the lose of and struggles of our kids very personally and always wonder when our turn will be. Because it’s inevitable. We all face the same fate and it’s not a matter of “if” but “when.”


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Prince Charming

I finished my series of letters to the boys, and in doing so, I was able to let go some of the hurt. Even though they cannot read them, letting them out was an emotional release that I very much needed. I still felt, though, that there was another a letter that needed writing. This letter will be read and understood, and instead of simply sharing my thoughts with him, I wanted them “out there” for all to see, because I think Jordan deserves all the credit and recognition in the world for the truly amazing and beautiful person he is. Because in truth, I cannot give all the credit to the boys for helping me to be strong.

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Baby Mine Part 3

Writing Landon and Blake’s letter felt so good. Was it emotional? Of course, but to put the words that have floated around in my head all these years into coherent, tangible form has allowed me to feel some relief from the pain of having them gone unsaid. My letter to Gabriel, while not as painful as the first two, is no less emotional to articulate. And so, here I go.

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