I tried quite a few times yesterday to pick up where I left off in the story of our journey. Nothing seemed right, and I was so frustrated, and then I realized…I can’t continue when I’m feeling so stuck in the grief of the moment. There is too much weighing on my mind NOW to even think about going back and taking on that pain as well.

There is no other way to say what’s been on my mind so often right now: we are losing Landon, and that is becoming so real to me right now. Since diagnosis, we have known that this stage would be coming. I have been watching it happen to other kids in our MPS family, but because Landon and Blake had remained largely unchanged since diagnosis, it didn’t seem as real. It was easier to feel removed from the effects of San Filippo. Over the last year, all that has changed for Landon.

He is different. The boy with the biggest personality and the most infectious smile is fading away, and it is physically painful for me to see it happening. I am paralyzed at times by the feelings that come with seeing my once vibrant and boisterous son with a lost and glazed look in his eyes. The smiles that constantly graced his face, the twinkle in his eyes that made him “my Landon” are so far and few between now. My tornado child, who once couldn’t be stilled for anything, is now moving with an obviously stiff gait. A child who once jumped and ran as often as he walked, is now tripping and stumbling when simply walking. He is losing the ability to take command over his body and I am left to watch, powerless to do anything for him or about it. The boy who spent his days laughing and causing mischief now only seems to laugh while having an “episode” that is either a seizure or a condition that has taken away his ability to regulate his emotions due to progressed brain damage.

In the last month, we have seen the neurologist, had a swallow study, and made the decision to have Landon fitted for his wheelchair. He has been started on seizure medication because of seizures becoming common occurrence over the summer, he had to be switched to nectar thick liquids because he has begun aspirating regular consistencies, and because it is painfully obvious that his mobility is not what it once was and he tires so easily, the wheelchair will soon be a necessity. This summer has been so devastating. I am watching my 8-year-old child wither away, being stolen bit by bit by a faceless and hideous demon of a disease. Knowing this would be coming someday has not made being face to face with it any easier. Landon had always been so strong, so full of life and I really never thought this would begin happening so early.

To see him doing things that he once loved so much, with no expression now is devastating. The little boy I raised is being stolen, piece by piece and what will be left behind will only be the shell of what was once my vibrant tornado of smiles and giggles. And I am frozen in this place of grief. It hurts to look back at what use to be and it’s almost unbearable to look forward at what more will be taken from him. I have spent the last month telling myself that I must keep moving forward, continue with daily life, and be thankful that he is still here and we have so much to be thankful for. But I think before I can really believe that deep down, I need to admit something to myself: I am not okay. I feel broken, and weak, and I do not feel strong right now. I don’t want to be strong. I want to scream and cry about how unfair this disease is. I want my son back. I want my tornado child back;  the boy who tested the limits of my patience and sanity on a daily basis. The boy who drew pictures in permanent marker on our refrigerator, the boy who had the cutest evil laugh, the boy who ate everything, loved everyone, and could do anything.  I am not okay, and I am frozen in this place of non acceptance, anger, and grief.


2 thoughts on “Frozen

  1. Speechless. Cannot even imagine. As a nurse, for a long time…I have watched many people leave this world…and unfortunately I have seen young and old. But, I cannot imagine being in your shoes…or even watching it happen. I think you should scream…cry and everything…you are human…I am practically balling writing this. You do need to be strong for your other boys (hubby too), but knowing that you are sad too will mean more to them…especially those losing a brother. They need to know it is ok…and Ashley…it is ok. God Bless!


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