Jumping Off Point

Jumping Off Point

Yesterday, we had a big time doctor’s appointment for Stevie at Boone Fetter Clinic.  A few of you already know that this was long awaited — not only for the last several years of talking about it, but once we finally made the decision to go forward, we had to book 6 months out.

Popular place.

They offered to make a referral for us, but I knew there was a long wait for a reason.  These are great doctors / developmental pediatricians, and I’m really hopeful that they can point us in the right direction. Felt worth the wait.

So with this looming for so long, I was ready to get it over with.

Or at least I thought I was!!  The morning of the appointment, we were up early.  I had my usual coffee and went for a second cup, when I realized I probably shouldn’t.  My stomach started to hurt and I started feeling the nerves kick in.  Trying to portray calm, while my insides were anxiety-ridden.  As I put on my face, I envisioned the feelings that inevitably wash over me every single time we are at Children’s Hospital.  The memories, good and bad.  It’s a strange feeling to return there.  I knew what was coming, but not really.

The direction we are going now is all new territory for us.  Not heart related, not eye related, but not-really-sure-what related.

You see, Stevie’s brain and the way it works and the way he processes things has always been a total mystery to us.  We’ve never been able to reach a diagnosis, even though he’s been assessed a few times.  They simply call it global delays or an intellectual disability, but I think it far outweighs either of those.  So while we’re not sure why he is the way he is (we have our hunches), we are ready to try and find out.  But mental health issues and learning disabilities are tough to nail down.  Is it brain damage, ADHD, learning disorder, multiple issues?  Can it be treated with medication?  Do we want to treat with medication?  Will he need more therapy?  Has what we’ve done so far helped him or hurt him?

And the first thing I realized during the appointment was that this was going to be the start of another long journey.  Or like a new branch of our already long journey.  A little fork in the road type thing, where we are choosing to go left and seeing where it will take us.

His lack of diagnosis is one of the reasons it’s been so hard for him and me to relate to other kids and parents.  Obviously there are no two families on identical paths, but there are usually similarities.  And we’ve had a hard time finding people to share this with.  Which means there’s no one to turn to for guidance or advice.  It’s definitely tricky to use our method — the “try everything and hope something helps” method.  I’d love to hear something slightly more definitive, and maybe find some other people who can connect with us.

So we arrived bright and early for our appointment.  I sat and gave them a long medical history (don’t they have charts for that??) and shared our concerns, while Stevie patiently waited, driving Hot Wheels on the couch.  It may have been the most well-behaved I’ve ever seen him, go figure.  The doctors were thorough and kind and didn’t rush me.  They told me I was doing a great job with him (which is always nice to hear).  They mentioned that this was definitely something they couldn’t give me any answers to right away, but we would start working toward that.

So they made a referral for me to do the following:

  • More therapy in all areas (Occupational, Physical, and Speech)
  • See a Neurologist for an MRI or some kind of brain scan
  • Cognitive testing with the Child Psychologist
  • Get his hearing tested again

Immediately, I felt… calm and overwhelmed at the same time.  Like I know this will be the right step, but also OMG WHY DOES IT HAVE TO BE SO MUCH WORK.  We already have such a busy schedule and it’s been off of our radar to visit specialists on the regular, other than his cardiologist and ophthalmologist.  This child is going to continue keeping me busy for quite some time.  But I know I can do it.  And Stevie can do it.  We’ve been drowning in appointments before, so it’s just breaking those busy days down into increments.  And if it means getting some answers and doing what is right for him, we’ll do it.

stevie fan club, parenthood, special needs parenting And I do hope with all my heart it’s right for him, as I’ve hoped with everything else we’ve tried.  This kid does not lead an unhappy life, by any means.  But his struggles are very real.  So if we can help take some of the weight off him, so he feels successful and confident, we just have to.  We want to do all we can to set him up for a happy life.

So here’s to the jumping off point on our little left turn at the fork in the road.

loves,
jaana

8 Comments
  1. Thank you for sharing this beautiful post and inviting us to share in your journey.

  2. My little guy is about to be 5 and we have been down a similar path. Just remember that a label doesn’t make a true difference ( well maybe with insurance) and there are varying degrees even within labels.
    Right now we have decreased sensory (vestibular and proprioceptive) and increased sensory (audition and tactile) as well as emerging anxiety disorder (gee wonder why ☺️) and speech delays. What a fun diagnosis soup. Some days he’s like any normal nuero boy and others well, oh boy.
    You are a wonderful parent for doing all you can and the patience- 😲. Just space out your appointments, take care of yourself, remember having you relaxed and available is so important.
    I’ll be rooting for Stevie and company.

  3. You two are absolute ROCK STARS! Stevie couldn’t have been born to better parents. You’re such a great example to me. And example of fighting for my children!
    Fight On! Fight Hard! He will get the best because that’s what you are.
    Love you my dear friend!!!

  4. Feeling with you and reflecting on how wonderfully complex God has created Stevie. He chose the perfect parents for Him and He is with you all on this fork in the road. ❤️

  5. One of the hardest things for me in life is uncertainty. It’s been the hardest thing in motherhood too, because you don’t know what’s coming next. I can’t imagine having this extra layer of uncertainty added to all of that. I think you are doing an amazing job and that Stevie has an amazing mother and advocate in you. Don’t forget to take care of yourself through this process of appointments too!

  6. Thank you for sharing! Your openness, vulnerability and strength are so inspiring. I def know how lonely the path.can be when there is a lot of confusion about behavioral stuff. With me it’s my husband and I have a feeling I know what it is but going through the challenges and not having many people to relate to can be very challenging. If you ever want to come to play and have dinner would love to help make your life easier. Stay strong. Xxx

  7. Remember…all flowers bloom at different times….your love and dedication is his nurishment. Continued blessings. Hugs!

  8. Love you so much and I am so encouraged by your strength. We are on the same waiting list for evaluations… I put off the paperwork forever because I knew it would be hard.

    Sending you love and strength

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