A glimpse into the heart of a special needs momma during a storm

This blog is my catharsis. I write to get all these thoughts and feelings out of my heart and into words. I share because maybe it will help someone. Or will give someone a glimpse into someone else's sometimes complex and difficult journey and they won't feel alone. And if no one reads it? No worries. Because it is for me and hopefully by the end of writing a new post, I'm feeling more at peace.

Needless to say, my thoughts and feelings have been all over the place over the last few weeks. At times, I feel like we're living in a blur. At other times, the days drag on while we wait for answers, a plan. I'm a planner. I don't do well with surprises and unexpected bumps in the road, so this has all been a little overwhelming. I'm also usually a calm and happy person who tries to always love life, so overwhelming does not fit me well. I'm feeling a little out of sorts, to say the least.

Moms are made to worry about our babies. We try not to let it consume us. But when we're thrown into a storm, there is no avoiding the thunder and lightning. Things weigh heavy on our hearts and our shoulders. We've all been here at one time or another. We learn to dance in the rain. We cannot control the waves, but we learn to surf.

And surfing is exactly what is happening inside my heart right now. A glimpse into the heart of a momma whose child is facing some major health issues. A glimpse into the heart of a momma during a storm...

<3 The support that has been given to us, shown to us, blows me away. From texts to cards to personal messages to flowers to food to treats to gifts...every single gesture and word means more than you can know. I don't ask for anything but prayers and good thoughts. But I've also learned that every little thing helps and I won't turn any gesture away. Life is too much at times not to accept help when it is being offered. So I accept, and I pay forward.

<3 Silence is golden. There are no right words but any words help. I'm not one that believes that everything happens for a reason. Or that if He brings you to it, He will bring you through it. But those words are better than none, if that's what someone truly feels. This doesn't mean I'm looking for comments on every status I post, because I'm not! Just know that if you don't know what to say, simple words go a long way. And this doesn't just apply to us -- this is sound advice for any special needs parent.

<3 The MRI scares me. I should rephrase that the brain MRI scares me. It was added to the spine because of Kennedy's recent headaches. Could they be from the spinal curve and/or lack of oxygen? Yes. But scoliosis can cause issues with the brain. We also know Kennedy has larger than usual pockets of fluid in her brain and it has always been a wing and a prayer that this hasn't caused any issues. And who knows what else could show up in the MRI. I want it over with and the results back. Not knowing is beyond stressful.

<3 We've been here before. But then, her rib cage was still stretchable and we saved her organs for six years. We're beyond that now. There is no good way to fix it this time. They will straighten her spine which will hopefully relieve some pressure on her lungs and heart.

<3 But she will always have the diagnosis of restrictive lung disease. This can mean different things throughout her life. It could mean she will never scuba again. It could mean that a bipap, oxygen cannula, portable vent, or even a trach/vent are in her future. Or it could mean that she just struggles with breathing when active. What it definitely means that every cold, sinus infection, flu, and pneumonia become dangerous to her. For those with restrictive lung disease, these are the things that are life-threatening.

<3 I've been posting a lot -- this has all been moving fast. And they have not been positive posts which actually bothers me, because I try so hard to be a positive person and promote positivity. I'm a silver lining kind of gal. But right now, it is difficult. I'm not looking for likes or comments. I'm just trying to keep people updated and to cope in my own way. When we faced this before - 3 surgeries, one month in the hospital, 9 days on life support, watching her die and be brought back to life, watching her go through drug withdrawal, having to eat and talk and walk again - there was no such thing as social media in my life. It was hard to keep those who loved Kennedy updated, and hard to find the support that we all need when going through such a storm.

<3 I worry about Kennedy. She is pissed. She is scared. She is upset. And she feels crappy. But yet she gathers her strength and gets through all of these stupid tests and appointments as best as she can. I hate that her life sucks so much at times. But as my cousin (by marriage) reminded me today, her life is so good at times too and those are the memories that we have to focus on through all of this, and focus on the good things to come. We had one of the best summers ever (especially Kennedy) and for that I am thankful. And we hope that she can return to "normal" life before next summer. I hope her soul is only bruised during all of this, and not broken. Thirteen is a rough age for a normal girl. let alone one who has to walk this path.

<3 Surgeries suck. This one will especially suck. It scares me that she might stay intubated in PICU for a couple of days. Intubation is always difficult. Extubation is always difficult (especially if not immediate after surgery). Surgeries on lung patients are dangerous, especially when her lung and heart will physically be shifted during surgery. Spinal surgeries can mean a lot of blood loss. And moving the spine is scary, even with nerve mapping in place. I know that it is a surgery that happens every day. And I wish that made me feel better. But I have that child that never quite follows the rules.

<3 I worry about Katie. I'm thankful she is the older sister for my own selfish reasons. I'm thankful that this journey has helped shape who she is and who she is becoming. I'm thankful she is there for her sister. But I know waiting for word from all of these tests and appointments is stressing her out. I know the uncertainty of her sister's future is upsetting her. And I know leaving when Kennedy is still in the hospital post-surgery is going to be hard for her.

<3 I worry about Chelsea. My one prayer has been that she remains stable till after we get through all of this. I don't think any of us could handle having to say goodbye in the midst of this. So far, she's staying pretty stable. But she doesn't do well if her people aren't here and a week in the hospital may be enough to send her over the edge. Kennedy is her baby and she tends to worry about her, even with her dementia.

<3 I feel bad for my friends. I know it isn't easy being my friend at times. It can probably be exhausting in times like this. I don't fall apart often but when I do, they are always there to pick me up and put me back together.

<3 I also have the irrational fears that serve no purpose except to drive me insane. What happens if surgery paralyzes her? What if she doesn't make it? What if I die in a car wreck tomorrow and she has to face all of this without me? And the list goes on. And you can tell me that these are ridiculous as many times as you want...you know they just come with the territory.

<3 No child of any age should be facing their 20th surgery. That's it. No. Child. Ever.

(forgive typos -- the problem is I can spell, I just can't type. and i was too tired to reread through it)