U Are Not Alone

It’s been a rough couple of months for this one. Dis-located shoulder, strep throat, hospitalization for possible shunt mal-function…. it comes in waves for her, for us. I don’t talk about it a whole lot because I have realized it’s a lot for others to handle or I don’t want to be a burden, or I just don’t feel like it. But sometimes, actually all the time, I’m learning it is better to be honest and vulnerable even if it is hard for others to handle, or uncomfortable for me so here it goes because many of you are asking….

When we r in the hospital we hear the terms “medically fragile kids”, “chronically ill kids”.  I do not like these terms. Though they may be the reality its a term that people want to use to define her. There is no lying or hiding that the past couple months have been hard, and dark for her and for me. Always hoping it will be different the next time. She does not want to be pitied… or for people to worry. She longs to be a “normal “ 17 year old with 17 year old worries and for the most part she is. As our kids get older it doesn’t get easier. Period. Whether they r healthy or “medically fragile” we worry, we hope, we dream. It’s true it does look a little different for our family. We truly do not live in fear of the next hospitalization. I believe that would rob us of the daily joy and adventure we feel and have as a family. We live and carry on each day like there isn’t a chronic illness. And sometimes we go a couple years with the bliss of nothing. Maybe that’s naive… maybe that’s why we r taken by surprise and pissed off each time it happens again. We sit for endless hours in the ER,she undergoes countless pokes because her veins have so much scar tissue they can’t find one and more tests than anyone should have to …ever, and she’s been doing this since she was 5 months old. And still… it does not define her. I’m am not gonna lie, at present we r weary, she is weary. It is lonely… no one understands, and once again the tension sets in, that u don’t want anyone to understand. She feels it, I feel it. Each new time the anger, the grief, the sadness and the helplessness rises closer to the surface. It comes quicker, the anger the hot tears.Her mind and spirit r so fierce but her body is broken. For now…. it is broken and failing her.

Not to mention the toll it takes on the other 4 members of our sweet family. People think when we leave the hospital it is this beautiful, grand reunion when we get home. But the reality is that while we have been gone the others have had to carry on, worry, answer questions they don’t have answers  to and a tired and cranky mom is what they get walking thru the door.

Journey is currently working on a documentary based on the role HOPE has in the healing of people who have faced tremendous adversity. Something she is obviously familiar with. Yesterday I saw it put into action as my girl sat hopeless, drained and in pain waiting for answers. Her best friend walked thru the door with Kombucha, yummy sandwiches, lavender lotion and fresh new cozy pants and jumped into bed with her. The laughter, and smiles and connection boosted our spirits for the next 5 hours. Then another friend showed up played music, drew on the walls and ate popsicles with her. I am sooooo thankful for her friends. It takes courage to show up. I get it… hospitals are not for everyone (nor should they be) they r dark and often scarey but I can not say it enough…if u can bring yourself to do it, show up. Even if it’s uncomfortable. Don’t let fear stop you. Because the light, the laughter, the sanity u will bring is one of the greatest gifts to the people stuck behind these sanitary walls.

Guys, we all have our shit, boy do we ever. We all have things that r hard, dark and situations that feel hopeless. We often don’t like to talk about them tho because it feels weak or it feels too vulnerable or there is fear of being judged. I don’t share this stuff for you to pity us/me. I share it to say u r not alone. In that dark, fearful, place. U r not alone. Share your shit. Talk about it with someone. And share it all.  The celebrations, the good, the bad, the messy…. all of it because as I’m learning (and I learn on a regular basis) It’s ok to be angry, it’s ok to be sad and it’s also ok to hope. And once again remember that this too will pass. That hope is scarey but essential and that when I don’t have it odds are, there are people out there that will have it for me/us. Thank u to my people and my girls people for showing up. U will never know the beautiful, impact u have had.


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