Since it is CHD Awareness week, I thought I would write a little bit about some of my more difficult experiences as a heart mom and some things I would do differently if given the opportunity.

I know, they say hindsight is 20/20. And I did the best I could at the time. I try to remember that. My therapist says I need to stop “shoulding” all over myself. (I love when she says that.)

So why even write about things I would’ve done differently? Am I just dwelling on the past? Living in regret? Being hard on myself?  No. I honestly just want to help others. Because if I can support people going through a tough time like this and help even one person feel less alone, then I will be happy.  It gives me purpose.

So if I knew then what I know now, these are some things I would have done differently when Stevie was a baby, surprisingly diagnosed with a congenital heart defect.

1. A Fetal Echo.  Dang, I should have done that while I was pregnant.  I was so sick of tests and ultrasounds at that point in my pregnancy that frankly, I just didn’t want to.  And they kept telling us the heart was strong and beating well.  So I passed on this test.  Now I know it might have told us what we needed to know.  It might not have.  But it doesn’t hurt to have it done.
2. I didn’t even know what a pulse ox was at the time.  But now I’d request one of those for Stevie before even leaving the hospital.
3. After Stevie’s heart surgery, I would have tried to hold him more.  I. Was.  Terrified.  All those tubes and wires and worrying that he was in pain.  I held his hand a lot in the hospital, but I didn’t hold his tiny body as much as I wanted.
4. I would have applied for Medi-Cal sooner.  Like as soon as we found out about his diagnosis.  It wasn’t until he was 3.5 years old that I even knew it was an option.  So we are just now going through the Medi-Cal process.
5. We should have started therapy right away.  I knew he needed it when he was around 8 months old, but if I had known that most heart babies need some type of therapy to make up for the time they spent in the hospital, I would have started much sooner.
6. Support group. Support team. Support, support, support. People who don’t care if you vent constantly. People who get it.  Whether they are friends, family, an organization, or group. You need to find a place to fit in. I’m still working on this one.
7. I needed to ask for more help.  This is a tough one for me.  Because it still effects me and still haunts me in a way, but as a first time mom, I felt like I was just handling things as they came. And I thought it seemed so hard solely because I was a new mom.  I didn’t take into consideration the post-traumatic stress and the crazy-ass hormones running through my body on top of the lack of sleep and the guilt and the worry and all the things!  Even if I had hired someone to help us through the nights or give me a breather during the day, it would have made a huge difference.  I was so delirious at some points, that I honestly look back and don’t think I should have been alone with Stevie.  And that scares me to this day.
8. Regional Center services were not easy to get.  I was frustrated with them and sort of gave up after contacting them initially.  I should have kept fighting though.  I should have been more persistent.  If I had known what a huge part Regional Center would play in Stevie’s life, now I would do everything in my power to make it happen as early in his life as possible.  And if I wasn’t getting the RC Services I wanted, I would do something as simple as look for infant physical therapy videos on YouTube and work with Stevie myself at home.
9. I hated this advice when people would give it, but I really should have slept more.  Plain and simple. Let the laundry go.  Let the house go.  I ended up letting them go anyway as Stevie got older.  But when he was a baby, I really should have taken every opportunity to sleep.  And I should have let him sleep wherever and however he wanted.  We “sleep trained” for THREE YEARS.  And I now see what a huge waste of time it was.  If he wanted to sleep in our bed, well.  I should have just done that.  It would have saved everyone a lot of grief.
10. And that sleep thing goes along really well with the biggest thing I would do differently now:  I WOULD LET GO OF MY EXPECTATIONS FOR MYSELF AND FOR STEVIE.  I was really hard on us.  I was sad that things weren’t going the way they were “supposed” to.  I still get sad thinking about it.  I put a lot of pressure on myself to do things the right way.  And I put a lot of pressure on Stevie to be a typical baby. And he just wasn’t.  And I would get so frustrated with him.  I should have done what worked for us and not what the books say to do.  Or what people told me to do.  I really wanted to do it right dammit.  But there was no way.  There is no right way to be a parent of a special needs child.  He should have been treated differently because he was different.  And I didn’t give him that leniency, or give ourselves a break.

Now I turn to you, my fellow heart moms and parents of special needs children – if you knew then what you know now – what would you have done differently, if anything?