Friday, July 10, 2009


Sarah has this book where she records her friends' best and worst "girlfriend moments". Yesterday it was Jacob's turn to be recorded in the special book, and his 3 best moments that morning were:
1. Playing peek-a-boo with daddy and Sarah.
2. Watching Barney on TV.
3. Sitting on the swing with mommy and Sarah singing songs.
This is what Sarah and I truthfully came up with, and that we both could see that he completely enjoyed with his laughs, smiles, and babbles.
The whole trache discussion with Jacob's neurologist has made me think a lot about Jacob's life and happiness. The way a trache is discussed in the doctor's office is balancing quantity and quality of life, since a trache clearly can extend a life if you have problems breathing and swallowing. At the same time, a trache comes with many downfalls, e.g. infections, 24/7 care, loosing the ability to make sounds, hard to get out of the house due to equipment, long surgery and recovery etc. I don't think Joakim or I are any closer in making that decision until we also can talk to his regular doctor end of next week - and even then I'm not sure what the outcome will be. The biggest factor will be how Jacob's recovery from his pneumonia and sepsis continue to go.
What bothered me is that it's very easy to say to someone that you need to balance quantity and quality of life. The problem that I have is that how can you talk about quantity when a child is 3 years old. Even if I convert his years into seconds, it's not a long life. I strongly believe Jacob has quality in his life - not the moments when he is hurting of course - but if you can smile when you recognize your parents and sister in the ICU - there is definitely a strong connection to life and willingness to live. Jacob doesn't care or know about material things, money, holidays, birthdays, concept of time, and many other things we typically value in life, but I'm not sure that defines quality.
Quality for Jacob is to be with his family, playing with his sister, being in school and playing with his friends, watching Elmo and Barney, being in the pool, horse-back riding - and the list goes on and on. I'm very sure that Jacob has quality in his life most days. In fact, he if anyone knows how to enjoy life more than many people I have met.
I am also not sure Joakim and I have the right to decide when it's time to stop intervention for Jacob. I understand that it's our decision by law, but how will we know we're truly making the right decision for him? I guess that's the $100 Million question. I was also told yesterday during my first epilepsy meeting at Children's that Jacob's clinic all thought he would never make it. They see it as a miracle that he survived. For me, I see a fighter and a boy who is not yet ready to throw in the towel in any shape or form.
I did read the book My sister's keeper by Jodi Picoult, and I know the mother in the book is not always put in the best light, but I completely understand her. You will do whatever it takes to save your child. Luckily, we don't need to put Sarah to the test for that, but I do understand the mother. I don't even think it was out of selfishness to loose her child that she pushed for all the different treatments, simply the love for her daughter. The book also shows how much a whole family is impacted by a sick child. I am very much looking forward to also watch the movie.
I guess this entry didn't take me any closer to the decisions we have ahead of us regarding Jacob. I know I love him, and it sometimes seems so unfair that that in itself is not enough. The good news is that Jacob started turning a corner yesterday. He started babbling much more again, and today I have suctioned him less than any day in the last month. We're still taking it slow, keeping Jacob at home. He has now one walk in his stroller under his belt without any drama!
We're hoping for an uneventful weekend!
Love, Maria.
P.S. I will upload pictures of Jacob later today/tonight, so you can see how he is doing!

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