Being told your child is going to die, well, it makes you think.
After watching Gran Torino (a fabulous movie I highly recommend), I realized that I don't know much about death. Unlike Clint Eastwood's character, Walt, I have never been to war, never killed anyone, never had an immediate family member die, never watched anyone die, etc. My first experience with death that I can remember was when I was around 7 or 8 years old and I went to an open casket funeral for a lady who lived next door to my grandparents. I'm not gonna lie, it freaked me out! My dad and I watched too many scary movies together while I was growing up and I seriously was waiting for her to pop up and grab me, even though she was a super sweet old lady. It makes me laugh thinking about it now, and how different things can influence your thoughts and beliefs... Anyway, not knowing a lot about death isn't a bad thing, but I think it leaves room for a lot of fear. I've had quite a bit of time to think on the subject recently, and since we're going to be faced with it if Skylar isn't healed miraculously by God, I thought I would ramble along some of my thoughts here...
My "postpartum depression" as it's called, was interesting. I had some uncontrollable sobbing, but only because I was thinking about death so much. It's funny what bringing a life into this world will do to you. I don't know if God was preparing me to deal with what lies ahead, but I just remember being extremely challenged with the purpose of life. I knew that one day, I would have to explain to my little girl that I brought her into this world (through birth, not that I created her), she has a purpose, but she will have to die some day too. I had no idea at the time of course that it may be so soon... I was thinking about how I would answer her questions about God, about life, and about death. I had to really examine what I believe and why I believe it because I couldn't just make something up to tell my child, or for that matter, just tell her what sounds "right" according to society. I was being brought back to the fundamentals of Christianity. Looking back on it, I think God was asking me if I truly believed in Him and used that time of questioning to strengthen my faith for the present.
I really struggled with death growing up. I used to cry myself to sleep thinking about losing my dog. It's something I really never understood. I knew that everyone was going to die at some point, but I just assumed it was going to be of old age - nothing horrible would happen to me or my family because I loved them too much, right? Wrong. My aunt passed away when I was in college - she battled cancer for a long time. I saw her faith and how many people she impacted through her life and it blew my mind. I hated that she had to die, but she went out smiling to be with the Lord. I realized then, and am still learning, that as Christians, we shouldn't be afraid of death because we have the promise of eternal life in Christ. I guess my faith was never solid enough to stand on that truth until now. I can honestly say, after everything we've been through, that I am not afraid of death anymore. I am afraid of how I am going to die, how family members and friends will die, because I love them so much and don't want to see anyone suffer or go through horrible pain... but once I am gone, I have faith that there is a heaven and I will be there celebrating life hopefully with everyone that I love. It's frightening to me how fragile we are and I am much more aware of my mortal flesh, but that's no reason to live in fear and not experience life. My dad and I have discussed recently how death makes us sad just because we have so much love for someone and miss the relationship we had with that person. A good friend was just over today for lunch and we talked about the same thing and how we feel a little left behind, or are scared to leave others behind. She mentioned that there's nothing natural about losing a child though and that death is a little harder to deal with. I have to agree.
There is a book called The Mystery of Marriage that is absolutely incredible and has a chapter dedicated to death. I hope you can check out the book sometime because it is everything I have ever thought about death, but put so eloquently and has so many great metaphors I'm not even going to try to summarize. It's a great book about marriage and life as well :)
I learned last week that 80% of marriages that go through the loss of a child end in divorce. I think that stat should be changed to any marriage that deals with a tragedy of some sort because it puts a lot of stress on people as individuals, and in turn, the marriage. I think that going through anything tragic will put incredible strain on a relationship, but Kyle and I are committed to each other and in our faith - we're confident that we can beat the odds, especially with the love and support from friends and family and your continued prayers. We're hoping that Skylar can beat the odds too and look forward to her first birthday.
Just recently, Kyle asked me why I tend to avoid the subject of death (as far as watching movies, reading books, etc.). Kyle is very pensive and enjoys thinking about a lot of different subjects and then discussing them... Not that I am not a thoughtful person, but I tend to be an extreme romanticist, while he's more of a realist. I don't mind a serious movie or book every now and then (I just finished Gilead, which was a great book!) but I like to be entertained to give my mind a break since I think about serious things quite often - I just don't talk about it much because it makes me sad. With movies, and really life too, I love the happy ending, the warm fuzzy feeling you get when things go "the way they should" or when people get what they deserve, or better. I loved the thought that we are going through this season of lent with a heavy burden and lots of suffering, the way lent is supposed to be, and that God would heal Skylar on Easter or during the Easter season because it's a time of celebration and would be incredible symbolism of Christ's resurrection. I then quickly realized that my plan isn't always the best plan, even though it sounds good to me, lol. God may have other plans, as much as I would love to see my little girl grow up. I know that God allows things to happen for a reason and has perfect timing and perfect planning. Don't get me wrong, I will be asking for a miracle until she takes her last breath, and then I'll still hope that there's a chance. Already, I have been so blessed by Skylar and how she's allowed me to grow as a person. To see how her life has already impacted others has been incredible and would not have been the case if she were a "normal" baby. Kyle and I have been able to meet some awesome people and continue to be surprised by the crazy connections and fun stories we're able to take part in because of this - not to mention the love we've felt from others.
Last week on monday, we had a meeting with the neurologist, who is kind of like an angel of death. What I mean is that he knows what is to come for SMA babies (he had a family member go through it) so he is doing his best to look out for us and prepare us for the road ahead the best he possibly can. He is a super nice guy, compassionate, and wants to make sure that Kyle and I are taking care of ourselves, and our marriage, in addition to Skylar. He asked me about any decisions we've made for Skylar and her medical care, support groups, etc. He said I looked tired (which was an understatement at the time) and wanted to make sure we got Skylar on a more manageable feeding schedule as soon as possible. He was encouraging - it was a good meeting and I let him know that we were preparing for the surgery and hopefully it would be sooner than later. That's typically the motto with SMA - the sooner the better...
A couple days later, we had a few more appointments with the pediatrician and the GI doctor. The first two weeks she was feeding through her ng tube, she didn't gain hardly any weight... we had her 4 month check up Friday morning and then a GI check up that afternoon. Both agreed that we needed to change something to help her gain weight. Her head circumference and length are both on track, but her weight isn't even close to the curve. At 4 months, she weighed only 9 lbs., but since the other measurements were on track, the pediatrician knew it was just a matter of calories to increase her weight. The GI doctor decided to bump her up from 20 cal to 24 cal and that made all the difference. She has gained 8 ounces in the past week and got the green light for surgery. We had her pre-op appointment this past Friday and were told that the surgeon is going on spring break April 2 so her surgery may be before then, but if not, it would be at least two more weeks.
We got a phone call today that her surgery is scheduled for tomorrow morning. Short notice, I know! It's a two hour surgery and will more than likely be a 4-5 day recovery. As soon as I finish posting this, I will be packing a bag, getting Skylar her last bit of food for a long time, and hopefully getting some rest. I am praying obviously for a great surgery and easy/quick recovery, but it would mean so much to me to be able to go to the Easter service at our church. I don't know that Easter has ever meant more to me than it does now. I truly am looking forward to the celebration, knowing the sacrifice that God had to make watching His only Son suffer and die on the cross, and knowing that we have hope and life to the fullest. I feel like we've been able to get a little bit more insight into the character of God through our experience and am thankful for that. I'll try to update the blog this week to keep you informed of Skylar's progress and recovery. Skylar's a little fighter and I have no doubt that her determined little spirit will help her get back to her smiley self after a not so fun surgery. Thanks for reading - my next one will probably be a short update... hopefully a lighter note - no heavy thoughts :) Have a great week!!!