Where will we be a year from now?



It has now been a round 3 weeks since Bridget’s gtube placement. All in all, I feel like we are adjusting well. There was a minor issue in surgery which lead us to staying in the hospital for longer than we had anticipated. I honestly thought that it would be more challenging to adjust to “tube life”, but truly Michael and I have grasped the concepts quickly, and Bridget tolerates her feedings so well. It’s more time and dedication, more planning and organizing, but we’re already so used to that with our lifestyle.


I will say, however, that Luke and Greta are very curious about Bridget’s tummy button. Greta likes to watch when I change her little tubie pads (I didn’t know there were so many little accessories). Luke is always very curious about how exactly the formula gets into Bridget’s belly. He often likes to be in charge of watching the bag until it is just about empty. So they are really taking things in stride too, often making sure that she has a chewy to play with while she does a feed or water bag.


But in true Sanfilippo form, a surgery couldn’t be enough. Bridget hasn’t walked unassisted since her surgery. We knew that her feet, legs, and core were growing weaker, but this surgery literally has wiped away her ability to walk solely on her own. I would say that is the thing Luke has been most observant of. Today when I was bringing the kids down to the basement, it really hit me. Luke can run down the stairs, Greta makes her way easily down the stairs at 18 months, and now here is my 9 1/2 year old that I have to physically carry down (and back up) our stairs. I know I always say this, but I never envisioned Bridget’s life…or ours…like this.


Even the simplest of tasks are now a completely new ball game. I have really taken pride in how well we have transitioned with Bridget through her ever-regressing state of skills. However, realizing now that I am physically unable to allow my daughter to sit or stand SAFELY is incomprehensible. I should be able to provide the most basic needs for Bridget…and I’m worrying that we’re getting to a point that I won’t be able to.


Bath time with the g-tube and lack of stability is now a major issue and we are working with Bridget’s amazing case manager to figure out a safer bathing option. Bridget used to assist me in the bath by lifting her legs up when I would prepare to put her into the tub, but she can no longer do that. It feels as though whenever we jump over a hurdle….another steeper hurdle is on the horizon.


All in all, I feel like I’m watching my baby’s life slowly slip away. Every day there seems to be a new challenge to overcome. Internally I know I’m striving to give my all and learn as quickly as I can, but sometimes I worry that this journey has changed me more than I even have time to comprehend. I fear that others see me as weak or broken. Maybe they only see my as the woman whose child is dying. Sanfilippo completely shatters every aspect of a family’s life. 


I hope to someday see the strength in myself, that others have mentioned that they see. I hope to find courage even though I feel like I’m often isolated in a world far away from others. I hope for more smiles from Bridget, as we try to manage her calorie intake, safety, and pain. I hope for happiness for my husband and other two sweet children, who deserve joy in their everyday lives. 


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