Help & Happiness Ahead (& Behind)

On the way home from Tristan's physical therapy today I sobbed.  I've thought, often, with very little progress, about what I would tell myself 26 months ago if I had the opportunity.  It's a therapeutic technique my counselor excels at using, but one I have a very difficult time making work for myself.  I get stuck.  I tend to think that's mostly because I know in most stages of my life, even if I was doing terribly I was doing the best I could manage at the time.  Perspective is valuable in healing but...hell is still hot even when you know you're just walking through.  And when you don't know if you'll ever escape?  It's boiling.

There were so many fears that grew in the beginning.  Before Tristan was born I felt so calm.  I had felt a sense of urgency to prepare my whole pregnancy, and I had followed those promptings.  I wasn't 100% prepared, but I was close.  I was in my third trimester.  Make it that far, you're golden.  But I know the things Jason witnessed those first few hours and whatever he said to his family, he and his sister weren't sure our little boy was going to make it.  Somehow I was protected from that.  There were moments, of course.  But mostly I just did what I needed to do.  I was there beside him all day every day, and I was confident I was doing everything possible to take care of my son.  I was absolutely upheld as much as anyone could hope to be.

I honestly think I was expecting all the neurological results to come back healed, or at least healing.  I knew, I knew my son was surrounded by angels.  How could anything but the best possible outcome occur?  When they didn't....it took me a few hours but I crumbled.  And then I got to shatter my husband, and as I do I pulled it together.  

I've said many times since that week, how grateful I am for Tristan's neurologist.  He broke my heart but threw me a lifeline.  He was clear about the damage, very careful not to give me false hope, but also clear about the ability I had to impact Tristan's future.  He couldn't say how large that impact would be, but he could guarantee that diving into every possible therapy, a minimum of 2-3 intense interventions a week, would give my son the best chance for the future we had always expected he would have.  

Expected, not dreamed.  Naturally you dream about your child's future but the basics like chewing, talking, walking, going to school, you just expect those.  They're what every child should have, regardless of their inevitable unique struggles.  So when the foundation upon which you've built every hope for your future is suddenly quicksand instead of concrete.....there's a constant fear of drowning.

This summer I recognized even with returning to counseling twice a month, I wasn't getting better.  I discussed the possibility of medication with my counselor and she confirmed noticing I seemed even sadder.  The hardest thing for me, and confirmed by my family as we discussed it many times, was recognizing that the grief and fear and exhaustion were all completely normal.  I was trying to adjust to a loss that might never happen. I was trying to get used to a new normal that wouldn't stay long enough for me to settle in.  There was nothing unreasonable or inappropriate about my feelings, but they absolutely were unmanageable.

I met with my psychiatrist, whose help I hadn't required in several years, and expressed my fears for how medication could impact any future pregnancies.  After being the one in a billion, no odds were good enough to assuage me.  In addition to the medication options, he also offered me transcranial magnetic stimulation (TMS).  Since I hadn't been on medication in years, there was no way insurance would cover this procedure.  It would be out of pocket.  My amazing husband got TWO bonuses which promptly went to 50% of my treatment.  Gotta love that man.  And the rest came out of our savings.

I noticed an increase in my anxiety initially, which was unsettling since anxiety is pretty rare and situational for me.  It's difficult to say if that would be the case for someone else because in that same time frame a...contentious variable was introduced into our lives.  I found I was tired a lot but I like naps anyway.  My parents and grandmother pitched in even more than usual entertaining Tristan as I had an appointment every day for at least an hour for 3 weeks.  The intense pace was challenging, especially in addition to all Tristan's appointments, but I found I eventually noticed the sadness, grief, and fear that threatened to swallow me when bad news or painful memories arose became manageable.  Sometimes that's all we can hope to achieve.

I said in the beginning I've pondered often what I needed to know as a brand-new mother confronted with her child's mortality, holding his future in my hands like cornstarch in water.  Tristan is crawling now, or at least has shown he is capable of it when big brothers are around to provide the motivation.  At exactly 26 months he hit the milestone we've cried for and worked towards since his neurologist laid down the gauntlet for us to carry forward.  At 14 months I posted he still didn't have any interest.  A full year later that dream came true.  It would feel so disrespectful, to my grief then, to the grief many parents suffer without ever reaching the eventual relief and hope we are now experiencing, to simply say "it'll all work out".  That isn't what anyone needs.  The questions are torture, constantly stabbing at the heart, and that pain is valid even if the outcomes feared never come to pass.

None of us know what the future holds.  It feels so important, right here, in this in-between place of great hope and great uncertainty, to document my thoughts.  I don't know if my son will ever walk.  I don't know how he will do in school.  I do know he has surpassed every expectation anyone (but me) has ever set for him.  I do know he is nothing less than a million miracles in one big beautiful smile.  I know I have done and will continue to do every single thing humanly possible for him.  I know he is mine for more reasons than I will ever fathom.  I know miracles come, even if they come at a greater cost than I ever imagined.  I know we are never alone.

But here's the crazy thing.  Some part of me knew all that in the beginning.  It's why he was sent to me.  Every fiber of my being knew I had to fight like hell, go to every single appointment recommended or offered, seek out every resource.  In the beginning, that felt impossible.  It wasn't just keeping the appointments, driving all over the valley, begging family members to keep my child from melting down in the backseat so I didn't crumble in the front.  That felt massive.  But pumping.  Feeding.  Mixing HMF and Neosure.  Cutting out dairy.  Giving massages.  Doing stretches.  Giving baths.  I know so much of that is just the normal weight of parenting but it felt so intensely magnified, all the time.  I felt so insufficient, and yet I knew I was doing everything I could.

So.  What I needed to know then, I already knew.  But I know it now more than ever, and the months and years ahead will probably strengthen that knowledge in so many ways I may never recognize.  I will never give up.  I will always move forward.  I am loved, by my family, my friends, my God.  I have this great responsibility not because God is cruel, but because He is so very good.  He knew I could and would do this, and He knew I needed to know it as well.  I wish this lesson were easier.  I wish it didn't come at my child's expense but...I trust Tristan is learning what he needs to know while he also lovingly teaches me.

Sometimes the miracles aren't burning bushes or food multiplying inexplicably or angels coming down.  Sometimes the miracle is that our hearts break, and heal, and break, and heal again.  Sometimes the miracle is the arms that surround us, the knowledge imparted to us to build and rebuild.  Sometimes, maybe even most of the time, the miracle is that we are still here.  We keep putting one foot in front of the other.  And we never, ever give up.