This blog post might be the most vulnerable one yet. I recently read a book by Brene' Brown on VULNERABILITY so let's see if I learned anything. :) It is my hope that you might understand this issue better or perhaps if you are challenged with the same issue or if your are a cyster (girl with cystic fibrosis), you might find just a little hope.
So whether it was because we were at the traditional child-rearing age, or just a question commonly asked, or the fact that I have the, oh so common, CF Pop Belly... if we've been asked once, we've been asked a thousand times. AND.... that is okay. Maybe you'll learn something new or get some pointers on things to say or not say around a couple that might be facing similar challenges. In fact, it's something you should know now more than ever with 5 million people in the US or 1 in every 10 couples facing it. It's a word that few people utter... it carries such baggage and feelings of shame - who knows why.
Your Party of 2 might be a result of INFERTILITY (that ugly word) or it's maybe choice. Ours is kinda both...
When D and I were dating and planning our future, we had always planned for it to be a Party of 2. We had accepted it and knew what was projected in the cards for us. If you would have read anything in the 80's and 90's about Pregnancy and Cf, you would have read a grave story. So we married knowing that was our reality. Then, a few years into wedded bliss during a CF Clinic visit (See this Blog post to learn what this is), my CF Doctor asked us the craziest question that brought tears, "Have you two thought about when and if you'd like to start a family?" Literally I was shocked. And I think D was too. We looked at each other dumbfounded and felt like an unexpected door had been opened for us. After some testing, I was cleared for takeoff. My doctor felt my body was strong enough for child bearing, but her major concern was child-rearing. It's the care after birth that would take lots of energy and attention away from my required CF maintenance. For example, have you ever seen a mom who... appropriately so... barely has time to do her own hair, makeup, shower, and dress and just seems exhausted from lack of sleep? Well, add in 2+ hours of daily respiratory treatments, adequate rest when we cough for hours a night, frequent hospitalizations, a puny immune system, an overworked body from just trying to breathe, not even counting the stress from insurance, medical billing, pharmaceutical companies. Her concern was validated and after much discussion and a Post-Birth Action Plan, we decided to give it a go.
For the first year, we didn't tell a soul. We were so excited and we weren't sure how everyone would take it because most had the knowledge of CF and Pregnancy being a big NO-NO. We knew that taking up to a year was normal for many couples, but by the end of year two, we decided some test would be a good idea. It was during that time that we learned that CF (as it commonly does) had affected my fallopian tubes. Of course the fertility specialist had lots of options but none we felt comfortable with. We decided to continue on without assistance since a pregnancy with multiples was too risky for me. Year three brought on an even greater emotional roller coaster. My schedule and my emotions were tied to my desire to grow our family. We were so glad that we weren't sharing with many that we were 'trying' because if they had asked me about it, I would have been crushed. However, that didn't stop random people from asking if we wanted children or if I was expecting (ARGGG - dang CF Pop belly). On top of that, we would see parents with multiple children, women pregnant for the 4th-5th-6th time, kids with parents that were true crappers, and the sight of a newborn baby sent the greatest pang in the pit of our stomach. It was during year 3 and 4 that I truly experienced so much spiritual growth. I learned more about God's sovereignty and that every gift is from above. I began to understand that I was not entitled to a baby just because I was a woman with the parts and my doctor said it was okay. In year 4, we also began to experience more frequently a very frightening challenge associated with CF - hemoptysis, also known as lung bleeds. It happens as blood vessels in the lungs weaken and burst, leading to the oh-so-famous dying scene of every movie - a person spitting up blood. To say this FREAKS ME OUT is an understatement. During that year, we allowed God to work through us and remind us that our story can be complete with just the two of us. We were still 'trying' in that 5th year, but after an an extra scary episode of hemoptysis that resulted in an emergency room visit along with an embolization to try to stop the bleeding, we knew we were about to be in the decision making business. Increased blood flow from pregnancy meant that child-bearing would now be a risky endeavor. And while the scene from Steel Magnolias where Julia Roberts famously says, "I would rather have 30 minutes of "wonderful" than a lifetime of nothing special" is a tear jerker, it's really just dramatic tv when you're faced with the real circumstances. As much as we wanted a baby, we knew that our life together was already special. And purposely making a decision that could leave D to raise our child alone, was NOT what we dreamed about. Right? Now let me be totally clear, there are some, not many, CF'ers who have carried and delivered and are successfully raising a family. They inspire the heck out of us all.
It was on Easter Sunday five years ago that we laid it at the cross. My prayer was for God to take away the desire if it wasn't His plan. Within weeks, we began our journey to feeling whole again. We actually felt JOY when we saw people posting their pregnancy announcements and seeing newborn babies being held by their precious moms. We were at peace in our hearts. And while holidays or the sight of my husband playing with a child seem to bring on wishful feelings, we rest assured knowing that God chose and chooses to bless our lives in other ways.
One day, I do believe, it will be different for all with CF; but for now, this is one extra blessing not for us. While I know there are quite a few special moments in this life we will miss by not having children, it causes us to find immense gratitude and appreciation for the other blessings that have been nudged our way.
So if you find yourself wanting to broach the topic about family or children with a couple, just know it might be a sensitive one. There are so many other topics to talk about that prove to be less heartbreaking like politics, religion, etc. Teehee. No, but really. :) Blessings come in may forms and may you allow your challenges to strengthen your faith and your marriage. A special Thank you to all the 'seasoned' couples in our lives that show us that being childless doesn't mean unfinished and show us how to live a fulfilling life together.
xoxo, Randi
