Have you ever received terrible news? I don’t mean that your car is going to cost you $500, or that you just found out you didn’t pass a test, kind of bad news. I mean, punch you in the stomach – turned your world upside down – and actually changed you on the inside, from that moment onward, bad news…
I’d like to think of my world – before receiving bad news – as a world full of carefree oblivion. Really, a place we all want to live in, a place free of tragedy with the feeling like all of our dreams are going to come true. The dream job! A happy marriage! Babies! And, of course, living until you are 200 along with all your loved ones! Unfortunately, I’ve discovered, carefree oblivion just isn’t reality for most of us.
I remember the moment this changed, for me, as if it was yesterday. It’s hard to make my mind “go there” because those feelings are still there and the emotion that comes along with that moment can be overwhelming. It was the moment I learned my firstborn, My Beautiful Baby Boy, had cystic fibrosis, a chronic illness that would Never. Go. Away.
I remember standing in my kitchen, hugging my husband. My life had literally stopped. Nothing else was important anymore. NOTHING. It was devastating with a capital D. I remember my body physically getting ill and shaking. I felt out of control. I didn’t know what would happen next. And I felt helpless, so, so helpless.
With normal bad news you can make a plan – a plan of recovery – but this was not the same. There was NOTHING, nothing I could do to take this reality away. Nothing I could do to change the diagnosis. I cried and I cried out to God that night like never before. I asked Him to please make the doctors tell me they were wrong – that it was a huge mistake. I prayed for instantaneous healing, as any mother in my position would. That first sleepless night was one I would like to forget but know I never will.
The days that followed could be summed up as an “overwhelming blur”. After a couple weeks of being completely consumed with the fact that our son had cystic fibrosis and trying to accept it as part of our lives, we also discovered that he had other, unrelated, health issues. For some reason unknown to even the doctors (which is very scary to hear as a parent that the doctor has no idea what is wrong with your child or why), his bowel did not function as it should. So, what followed was almost a year of literally living at the hospital – not knowing if he would ever eat again (beyond being nourished through his veins), and not certain he would even survive.
There were some dark, dark days for me during this time.
If someone had of told me what my husband and I were about to experience, before this year happened, I never would have believed I could have gotten through it. Yet, I survived. There were many tears and much fear along the journey. Yet, I survived.
Many people ask us how we got through this time and to be completely honest, I can’t say it was because I prayed hourly, or read my entire Bible throughout the year. In looking back, I can only say it was because of God that we survived. I can’t help but think of the many people who would write to us and tell us they were praying, even during the times that I felt to hopeless to find the words to pray, myself. It makes me think of the famous poem “Footprints”. It tells of a person who was walking along the beach and talking to God. When they looked back, they saw only one set of footprints in the sand. They asked God where He was during this time. God’s response was that during the hard times He carried them – the reason they survived. I know for a fact that I could not have made it through this year on my own strength. I’m so thankful for the many prayers that were said on my behalf, and am forever thankful for the power of prayer that helped our family during this difficult time.
One lesson I learned through this experience is that I will never add to a card, or whisper into someone’s ear, who is going through a difficult time, that I am “praying for you” – unless I am completely and genuinely going to pray. I know how much I clung to those same words and messages and want God to use me to help others during their time of need, too.
The most incredible part of the year, which quite honestly is a story in itself, was how my husband and I could look back and see reasons why things had happened as they did – to get us to “this” place. We were able to go home, after our eyes had been opened to so much while living in a children’s hospital, with a thankful heart. We were so thankful for our son. Thankful for having a house made up of more than just one room. Thankful for a bathroom that we didn’t have to share among many. Thankful for the ability to appreciate the simple things in life, the things that went so unnoticed before. It also became apparent that some of our previous, biggest worries in life were just not worth getting worked up over.
I am not so sure I would have had the same positive outlook, of a having a child with a chronic illness, had I not been thrown into a pit of such despair and having seen so much worse. So, so much worse. Although this particular year was traumatic, it allowed me to grow into the person I could never have become, otherwise. And, it allowed me to gain knowledge about life that others may never have or experience.
For some reason God chose me to live this experience. I have no idea why, but in some ways I feel privileged to have learned the lessons that He taught. Some may never learn them, or take years to learn and fully grasp. Yet, at the same time, I would never wish this year upon my worst enemy, nor ever want to experience it again myself! There is a book that was passed down to me that I read during this time (and even a few times since) called “Second Guessing God” written by Brian Jones. This book really helped me recognize things to be grateful for during hard times.I would definitely recommend it to anyone who has experienced tragedy or a very difficult circumstance in their life. I have also, always, found peace and comfort in music. It amazes me how many times, when I may be having a bad day, I get into my car – turn on a Christian CD and “just the song I need to hear” plays.
At the end of our hospital stay, and upon our return home, we found out that we were expecting another baby. I always wanted to have a big family, but when we discovered we had a child with a genetic illness, there were definitely doubts and panic that filled my husband and I in regards to having more kids. This second pregnancy was different than my first. When you have never experienced a loss of health, or illness yourself, or know of anyone in your close circle of family or friends who has, you tend to live in a world of oblivion. You say phrases like, “I will be happy if this baby is a boy or a girl, as long as they are healthy.” However you don’t really believe deep down in your heart that the child you are carrying isn’t or won’t be healthy. After all, those things happen to “those other people, but not to me/us”. So when you are given a reality check that those things can and do happen to anyone, in fact it has already happened to you, you still say these words, “I will be happy if this baby is a boy or a girl, as long as they are healthy”. However the meaning comes from a much deeper place and had a much deeper meaning.
Since cystic fibrosis is a genetic illness, we knew that there would be a 25 % chance of having another child with the illness and a 75 % chance that our second child would be healthy. We prayed and prayed for a healthy baby. It was very difficult news to endure when we were told that our second boy was also born with cystic fibrosis. Even after having gone through this “discover moment” once before, when you hear that another child has an illness, the time of mourning and sadness is no different, no better. It is news that is hard to accept. And, I must admit that my acceptance of this illness in the life of my boys can still waver, even years later.
A lesson that is difficult to learn, and hard to accept, is that God made our two boys completely and exactly perfect according to how He wanted them to be. He knew what He was doing when He made them, and He knew what He was doing when He gave them Cystic Fibrosis. For some reason He trusted, and chose, my husband and I to be their parents; a job He felt that we would do best, again, for His plans and purpose.
As a parent and a Christian, it can sometimes be very difficult to have faith and trust in God. Some days are much easier than others. I was really struck by Matthew 17:20. It says if we have faith the size of a mustard seed, the smallest of all seeds, then that is enough. There are days that my faith is intense, however, there are many days when I feel very doubtful and alone. It brings me so much hope to know, that even on these days when my faith is smaller than the size of my finger nail; God does not consider me a complete failure.
Our family has since expanded, once again, to include a daughter who does not have Cystic Fibrosis – and – there is a fourth little one on the way! While I know that some would say we are crazy (or think it), I also know and continue to work through the fact that God‘s plan for our life is not relevant to them. It is, however, just perfect for us.
I won’t lie and say that these days of pregnancy aren’t very difficult and that there are many days when I’m just barely clinging to my small mustard seed… I am excited, yet terrified, to see what God has planned for us next. I am sure there are many more lessons to be learned, more tears to be shed and fears to be felt, but I know there will also be joy. I can choose to live every day thinking the worst, and feeling completely sorry for myself. Or I can choose to live each day with gratitude and in awe for all that God has given me and entrusted into my care – which is how I am trying to live my life. I know that God can do anything. Hopefully even help a cure be discovered for our sons!
When I have months full of being caught up in the busyness of what our life includes, it is very reassuring to know that God is never going away.