Friday, February 26, 2010

Better to know?

This may seem like a very random post for today, but it's something that has been running thru my head for the last few days. When Jake was born and diagnosed with Down Syndrome, EVERYONE asked if we would have rather known early on in the pregnancy, or if we would have rather had the big SURPRISE? I have always had a really hard time answering that question. On 1 hand, there is our situation...had multiple tests done all that came back negative for ANY kind of health issues (no DS, no heart issues, no under developed anything). Like anyone else who knows little about DS, we didn't think twice about it, because we are both in our early 30's and have no family history (that we know) of DS in our families. It just wasn't something that we even considered to be an issue. Then, 12 hours after birth we got the news of our lives, and it was the most difficult news I've ever had to digest. We went those 12 hours believing we had a perfectly typical baby (with webbed fingers) sitting with us. Later in that night he started showing signs that he was having a hard time breathing. He spent a few days in the NICU, and a few more days on Peds being watched...the rest in on Jake's story page! So would I have rather known that Jake had DS during my pregnancy...Yes & No. See, I still can't answer that. I could say YES, because had we known, we could have had more testing done to see that he had a HUGE hole in his heart, that he had some under development issues, and our first experience with our new born son could have been a whole lot different. We could have had the appropriate doctors/nurses in the room, he probably would have been taken to the NICU right away, the list goes on and on. But then the "what if's" kick in. What if we were told he had DS, spent 8 months worried sick to find out he didn't have it? Would I always wonder why his test came back positive? Would I always be looking for things to be wrong with him for answers to why his test came back positive? I could say NO, I would rather not know (which we didn't), and you know how that story plays out. But now I find myself questioning whether or not knowing really makes a difference. Here is why... Jake is by most standards healthy now. After each of his illnesses, we learned a little more about him and learned how to make him healthier. After 15 months of the most traumatic illnesses, 3 surgeries, more doctors visits than I care to think all just stopped. Jake is healthy. That is hard to digest, believe it or not. So a few days ago, Jake woke up in the middle of the night breathing really bad, coughing a nasty barking cough, and just all around miserable. My very 1st though...go pack your bag, were going to Seattle. Does that fear ever go away? After about 3 days, he seems to be over it! And yes, I want to throw a party! Jake kicked his first illness without a Med Star flight, stay at Seattle Children's, Kadlec ER, or even the doctor's office visit. AMAZING! So now I'm stuck thinking would it have been better to know and process all this info during pregnancy, or since I didn't know, will I forever think that every time Jake coughs I need to pack a bag?


Josette said...

Sorry if I made this question stick in your head. Id like to tell you after 7 1/2 years I dont feel like running to Sacred Heart everytime Jaden is sick but most illnesses I do. I think as parents we just naturally worry and when you have a child that has gone through hell we worry even more because we know how quick things can go from bad to worse. It does get a bit less intense and with knowledge I think comes power. After we have been through so many trips to the hospital I think we become more intune with what is going on so we can focus when a illness does occur and we know our kids at their worst sickness so at times we can tell when they are in trouble or just have a cold. Through it all I just learned to trust my instints if I feel something is not right the doctor ARE going to listen to me.

Our life...special with needs! said...

Oh Josette, NO, this has nothing to do with you asking me! This is 100% coming from Jake feeling icky earlier in the week. After his last little stay at Kadlec, I convinced myself that I was over that fear of illness taking my baby back to Seattle. Then when he got sick this week I realized that I am SO not over that feeling. Then it started weighing on my mind that I may not ever loose that feeling!