Wednesday, June 6, 2012

Not For Nothing

People often like to remind me that pain has a purpose.  That we can't always see it in the present moment, but that one day we will look back and it will make a bit more sense.  I have a hard time jumping completely onto that bandwagon.  I've seen and experienced so much of life, watched people face things they should never have to go through, and held a little boy's hand while in excruciating pain.  No, it doesn't make sense.  And I don't think it should.  At least, not all the time.

But there are moments, albeit brief moments, where we can at times catch a glimpse of purpose in the pain.  I had one of those moments recently.

When I was pregnant with Jackson, we discovered at the 20 week ultrasound that he had a bilateral cleft lip and palate.  As you can imagine, the shock and pain of this discovery was almost more than my heart could take at that time.  But then I kicked into gear, researching and learning and gleaning as much information as I could, to try to be the best, most informed mom I could for this little boy.  My boy just got dealt a hand in life that was completely out of his control.  I researched bottles and what the best ones were for cleft babies.  When he arrived, I had every possible option available.  I researched surgeons and found one of the best in the country.  I researched.  And one of the things I found was something called NAM (nasal alveolar molding).

Even though NAM has been around for years, and the results substantial, it is still considered experimental, experimental meaning "not covered by insurance."  To have Jackson go through NAM was going to be $4000 out of pocket.  But, thanks to family and friends, over $4000 was raised to cover it, and everything over that amount was donated to Operation Smile, one of my favorite organizations.

 "Have a vision that pulls you through the pain of transformation."

NAM was rough, really rough.  We began the process right after Jackson was released from the NICU at 6 weeks old (although given his prematurity, he was considered full-term).  We began taking weekly trips down to CHLA.  While a very difficult time, I have some of the best memories of taking the train down with my mom, my Aunt Mary picking us up and taking us to CHLA, sharing lunch, and getting much needed support.

Our sweet Jackson hated it, as you can probably imagine.  And it was a hard few months while undergoing this procedure.  We watched as other parents gave up on NAM, as it was too difficult to see their child in pain.  But we held on.  Because we knew that the results would be worth it.  Not only would NAM give him a better repair, but it would (hopefully) lessen the number of surgeries he would need in the long run.  So we pushed on.  And week after week, we started to see results. 

The NAM gear came off the day of Jackson's first surgery...  May 1, 2008.  We did it.

Fast forward to Jackson's recent craniofacial team appointment...  Typically at his age, Jackson would undergo a lip and nose revision.  When we saw his craniofacial plastic surgeon, he told us that Jackson is looking great, and at this time, doesn't need this surgery.  He told us that for now, they will focus on dental work, and his next cleft surgery probably won't be until he's 7-9 years old.  Incredible.

So, today I am thankful.  Thankful that "experimental" procedures like NAM are available to kids like Jackson.  Thankful that the pain was not for nothing, one less surgery for him to endure.  And I'm thankful for this moment, the chance to glimpse a bit of purpose.

Surgery Update:
Jackson was going to have to undergo three separate surgeries this summer.  We're now down to two:

June 15th:  Jackson will have a tonsillectomy, in the hopes of curing him of PFAPA.  There is a 60-80% chance of a complete cure.  If it doesn't cure him, at the very least, it is has been shown to reduce the number of fever episodes.

July 26th:  Jackson's dentist is pulling his 4 top front teeth, all of which are so far up into his gum line, they are hard to get to, one having come through his palate.  At the same time, she will do x-rays to see where his permanent teeth are so we have more of an idea of what we will be dealing with in the future.

1 comment:

Stina said...

I foundyouthrough emeryjo's blog a long time ago. I love being able to catch up with how Jackson is doing from time to time. Thank you so much for putting his and your family's store out here. I pray for you all. And, am now thankful right along with you even though I only feel a fraction of what you must feel, that he is facing two surgeries for now instead of three...