Confessions

I'm behind on blogging and hope to catch you all up soon. But I've been up all night trying to put my heartache and thoughts into words. This is what I came up with. Fifteen honest confessions.

 1.  My heart hurts lately.  A lot.  It hurts when my baby is in pain.  It hurts when I'm scared.  It hurts when people say ignorant things.  Heartache sometimes wakes me up in the middle of the night, like tonight.

2.  I'm exhausted mentally, physically and emotionally.  A lot of times I feel like I'm running on pure adrenaline.

3.  I honestly and truly think my baby is beautiful.  And the next few people who attempt to tell me otherwise might get hit in the face.  No joke.  I'm at a breaking point, and I'm tired of hearing things like, "Oh, what's wrong with him?"  "What disability does he have?"  "Is he down syndrome?" and the one I simply can't hear anymore, "I knew there was something wrong with him from the day he was born."  I know he looks different, and he is honestly the most beautiful thing I've ever seen.

4.  Sometimes I wake up in the middle of the night just to let out a few tears when no one is looking.  It's hard being strong all of the time.

5.  I am a doctor.  Really.  Tristin West M.D.  I make medical observations all day, document them, perform research, work on physical therapy, give medicines, and in many situations doctors now ask me how to do their jobs.

6.  Nothing in the world is worse than watching your child have a seizure or stop breathing.  Nothing.

7.  I have lost me.  I don't know who Tristin is anymore.  I no longer have hobbies or interests.  I rarely laugh or joke.  I don't play or go places I used to.  I have a hard time talking with others about anything that isn't medically related.  I am aware that all I know how to talk about anymore is my son.  I know it's annoying.  But it's the way it is and I can't fix it right now.  110% of me right now is going to keeping my son alive and happy.  There's no time or energy left for me.  And I'm okay with it...for now.

8.  I have healthy baby envy.  If you find me staring at a cute, healthy baby in an intense way, it's because I am entranced.  Healthy babies fascinate me.  The do normal baby things.  They have baby rolls and make baby noises.  They sit up, hold their heads up, and reach for things.  The can put all sorts of strange things in their mouths without their moms freaking out about germs.  They don't have things in their noses or taped to their faces.  I enjoy watching their every move, for a minute. And after the fascination wears off, my heart burns.  Not a gas-inflicted heart burn.  An envious heart burn.  It's as if reality burns itself right into my heart.  That's what my baby SHOULD be doing.  That's what he SHOULD look like.  I don't ever desire to change things, because I love my boy, who he is, and everything that comes with him.  But sometimes, okay all the time, it hurts watching a normal child be normal.

9.  I am in survival mode, every day of my life.  I think everyone has had few moments in time where life was so crazy or difficult that it was enough simply to survive.  Those moments are typically brief and commonly have a light at the end of the tunnel that help get you through.  Every day is a battle, and every day I'm simply surviving.  I've tried innumerable times to get on top of things.  I've tried to get a routine down.  I have a calendar.  I try to plan.  But without fail, every day of my life, it all fails.  I literally am just keeping my head above water every day of my life.  And for a planner and a perfectionist, that is very difficult.  I can't plan and I can't perfect.  I simply survive.  And right now, I don't see any light at the end of the tunnel.  I try to just keep on keepin on.

10.  For the first time in my life, I'm learning to say, "I can't."  For anyone who knows me well, that will come as a shock.  I would have to say that one of my mantras in life has been, "I can do anything."  Where there's a will there's a way.  I have always been able to do anything that I set my heart out to do.  I have accomplished things that at times seemed impossible, but I will work myself into the ground to make it happen.  And in a way, I am still living that mantra, but there's a caveat.  Choices I make now affect my son, his life and his well being.  Because of that, I'm having to say, "I can't" a lot.  I can't work full time right now.  I can't make long-term or short-term commitments.  I can't help others much right now.  I can't do more than I am doing right now.  I can't.

11.  I don't care.  There's a lot of drama I don't care about right now.  I don't care that people are upset at me.  I do not choose to keep my son from family and friends we love.  I do not choose to keep him in a bubble.  His life depends on my ability to keep him well and safe.  If you don't like it, tough.  Every choice I make to take him places is carefully considered.  We consider the amount of people, the risk of germ exposure, and if the people he may be exposed to are vaccinated.  If going to a particular place or being around particular people is a risk to my son, we are not going to do it.  Other people don't have to stay up all night watching their child breathe when he's sick.  They don't have to suction him out every couple of hours so he does not suffocate on his own mucous.  They don't have to feel the guilt of putting his life at risk simply by exposing him to every day germs.  So when people question what I do and the decisions I make, it becomes obvious they are not supportive of my son's life and my family.  For those who simply don't understand, let's talk about it.  For others who are choosing to be upset/offended and just want to cause drama, guess what?  I'm doing what's best for my son and I really don't care.

12.  I believe I am entering a state of mourning.  I am mourning the child we didn't have.  I've been told that's okay.  Honestly, my heart is full of gratitude.  No, it's exploding with gratitude.  My son is alive and he's making amazing progress.  That is what matters most, and most days most of the time, that's enough to make me incredibly happy.  However, every parent has those moments when they day dream about things they will do one day with their children.  I have those moments too, and then they're followed by an awakening of the realization that some of those things can't and won't happen.  Our son is likely to have long-term disabilities.  We're not certain what they are right now, but life won't be what we planned it to be.  It is still wonderful.  It is still amazing, and we love our life with our son.  But, we are having to let go of some expectations and dreams.  And with that comes a mourning period.  I won't dwell on it, I promise.  But sometimes I just need to cry.

13.  I'm pretty sure I have PTSD.  Either on the way to the hospital or while at the hospital, I consistently have anxiety attacks and nausea.  There have been few trips to the hospital in which I have not spent some time laying on the hospital's bathroom floor, near the toilet.

14.  I need help.  That's hard for me to say.  I don't know many people who like to ask for help, but it is not fun.  But I'm getting more comfortable with it.  There are many things that I have to do which are impossible or nearly impossible to do on my own.  I have a lot of good friends and family members who are willing to help.  Please note, however, that it does not feel good to be referred to as somebody's "service project".  If it is going to put you out to help, then please don't.  I have plenty of friends and family who are willing to help simply because they love me, Mike and Jayson.  They don't do it to say they are doing service.

15.  I am fine.  Really.  When you ask how I am doing and I answer fine, I mean it.  Despite the previous confessions of heartache, trial and pain, I am fine.  I don't enjoy living in and out of hospitals.  I don't enjoy the worry I experience every moment of my life.  But honestly, I am incredibly happy.  Becoming a mother has been the most rewarding experience of my life.  I have loved every moment, even the bad moments. Because even then, I was Jayson's mom.  Nothing ever has brought me more joy.