Friday, July 23, 2010

No more than we can handle

I have heard many times before that God never gives you more than you can handle but I haven’t truly understood it until now.


It’s been half a year. Six months ago today, my son passed away. How crazy is that? I feel like it was yesterday, yet it does feel like so much has happened since then.
 In the past months, I have reflected on just how perfect God’s timing is. He never gives us more than we can handle-although it seems like way too much at the time, trust me!
 I remember the day that Brendan was born. The doctor gave us the news about his heart, how he needed surgery, how it looked like he had cysts on his brain, and the genetic issues they suspected. Jeff and I were crushed. But at the time, we knew that we would get through it. God gave us enough strength to get through that one thing at that moment. He didn’t give us any more bad news for a little while. That gave Jeff and I time to be together as a couple, pray, talk, cry, and time for me to come down from the highest emotional high in my life, to the lowest low in a matter of hours. Pregnancy hormones are a bitch. (sorry, but they are.)



Later that evening, they told us that Brendan would have to be transferred to Los Angeles that night to go to a higher level NICU, and to be nearer to Children’s Hospital LA where they have an amazing pediatric heart surgeon. Jeff and I were, again, shocked, but we knew that it was for the best. After all, who doesn’t want an amazing surgeon for their newborn son? We knew that this meant that we would have to stay up in LA for a week or two, but we were ready for anything at this point. Brendan was transferred that night, and they told me that I could not go with him because I needed to stay overnight just to make sure I was okay. This was another speed bump that broke my heart. Why didn’t they take me, too? My baby needed to be near me! But alas, God calmed my heart and I knew that the best thing for Brendan was to have his mommy strong and well. So I decided to stay overnight.



The next morning they told me that they wanted to keep me for at least 24 hours total- which meant until 2:30 in the afternoon. I politely refused because there were no real reasons for me to stay. I was fine. Brendan needed me to be near him. I needed to be near him. They tried to expedite the discharge and by 10 am, Jeff and I were off.



The next few days were a blur. I feel like we got a grab bag of good news- heart surgery scheduled, and bad news, he wasn’t eating well. But each time a doctor would give us bad news, it was like God knew just the right amount of news we could handle. We took everything one hour at a time. We spent as much time with Brendan as we could.



After the heart surgery, it looked like everything was looking up. The surgery was successful, we got the genetic testing back, and Brendan had no known syndromes. God knew that Jeff and I needed a glimmer of hope. This gave us the strength to fight even harder for our son.



Then we were told that Brendan’s feeding issues were due to pyloric stenosis (where the opening from the stomach to the intestines is closed off, not allowing for much food to be digested). This required surgery. Again, just one little bit of news at a time. You could say that God knew that Jeff and I had pyloric stenosis of the brain- we could only digest bits of bad news at a time. So we dealt with this news as well.


A few days after surgery, Brendan seemed to be doing well. This is a day I will never forget. It was the day after Thanksgiving. The results from Brendan’s MRI were in. Our regular doctor was on vacation, so there was another doctor that we have talked with only a few times. She was calm and quiet. She gave us the news that part of Brendan’s brain was missing. The dark spots that they thought were cysts, were actually spaces of nothing in his tiny little head. This is the news that Jeff and I were not expecting. It looked like his little brain just didn’t develop. The doctor told us that this meant that he wouldn’t be able to coordinate movement: no breastfeeding (although I was pumping and he was exclusively getting my milk through a tube), no feeding himself, no going to the bathroom himself, no playing with friends. This was devastating. We asked what the chances of survival were, and the doctor was not sure, but it didn’t look good. Brendan had had breathing issues since day one and they thought that a combination of his genetic issues and brain issues were to blame. Jeff and I were prepared for some sort of bad news, and we were always prepared for the possibility that he wouldn’t survive, but this was too much.



We asked to have Brendan transferred to a facility closer to home. This was a hospice care facility that would help him with feeding and they would watch his breathing issues. Jeff and I knew that Brendan’s quality of life was not going to be good. It was like he was going to live like a little vegetable. The worst part was that he still couldn’t breathe well. He would need to be repositioned and given oxygen and turned over just to get air on a daily basis. His oxygen levels would drop from 100% to 50% in a matter of seconds and he would turn blue.


Once Brendan was there for a few days, it became very apparent that he wouldn’t survive much longer. He was off the oxygen and he was eating well. But the breathing issues were getting worse. Jeff and I only briefly considered the possibility of bringing Brendan home. But at the time, watching my son die at home was not something I was prepared for.



The more and more that we talked, the more we realized that having Brendan at home was best. He could be near mommy 24/7. He could be in a quiet non- machine beeping environment. It was also best for daddy and me. We wanted a chance to be a family. This was something that I know God had prepared us for. Earlier, it didn’t seem like it would ever work to bring him home. There were too many obstacles to overcome. But one by one, God removed those. God knew that deep down I wanted my son home with me. God prepared my heart for the fact that Brendan would more than likely die at home.



I know looking back that God had given us little miracles along the way to give us hope. We needed to hear each bit of bad information when we heard it. It allowed Jeff and me to make the best decisions for Brendan’s care. We took things one day at a time. Had we known everything from day one, I don’t think that we would have bonded as much with Brendan. I don’t think that we would have been able to make the decisions that we did about his care. We may have rushed into things. I may have let the depression take over everything. But instead, I was given a little at a time. Each bit was given at the right time, and it allowed us to take care of ourselves as well. God knew that Jeff and I were no good to Brendan if we were depressed (truly depressed, not just sad), overwhelmed, and defeated.



We felt these things, don’t get me wrong. There were times that I would cry and cry and cry. I didn’t wear mascara for the first 4 weeks. I remember the day that I decided to wear mascara; it was the day after Thanksgiving. Yeah, bad idea.



God is in control. It scares the crap out of me to give up the wheel and let him drive, but ultimately, it means that I am a passenger in a car with an experienced driver, instead of being the blind, inexperienced, overwhelmed and lost driver.



God will take you on the side streets sometimes. He even takes you on the back roads of the really bad part of town. But he will never drive you into the river without first giving you a lifejacket, showing you how to use it, helping you put it on, and then letting you hold onto his back while you both swim to safety.



I have heard many times before that God never gives you more than you can handle but I haven’t truly understood it until now.

Tuesday, July 13, 2010

Lots of change

Hey Brendan! I haven't posted anything in a while. Mommy has been busy! We are moving to TN in 3 weeks, we went house shopping (and I think that we found one), and mommy and daddy are finishing up work at Fullerton. We love you and we think about you often. Your little brother is getting bigger and he kicks mommy all the time!


I think about you all the time. I still get sad, but don't worry, mommy knows that you are in heaven and that you are happy. It is difficult to think about the fact that we will be leaving the place that you were born, and the place that we brought you home to. But you are always in my heart, and if I have to live in a 2 bedroom, 900 sq ft, 3rd floor apartment forever, I am going to go crazy. 


Daddy and I decided that your "B", the letter that we made for you to put in your nursery, will hang on the wall in your brother's room next to his letter. We will tell him all about you. We will make sure that he knows that he has a big brother who will always look out for him.


Well, Tennessee was beautiful. Mommy and daddy are so excited to get a house out there. We have a few in mind, and have an offer out on one. Hopefully we will know more this week. We will have a huge backyard for your brother to play in, and enough bedrooms for a big family! There will be a big kitchen, where we will eat together as a family- always with a place set for you. 


Well Brendan, mommy needs to go fix dinner for daddy. He worked really hard today and didn't eat a big lunch. When daddy is hungry, he gets cranky, so I'd better hurry. :)


Never forget that we love you.


Love,
Mommy and Daddy