As a mother, I have learned that there is a lot that goes on with raising a child with this disease. I, being a reader and researcher type, looked for any kind of article, self help book, and nutrition books after having Brandon. I was highly frustrated to see that there wasn’t much information on a healthy diet for CF, and nothing that I could find that dealt with any allergies or alternative diets with CF.
Personally, I am a happy person and a fighter, I am the go getter type so it really takes a lot to knock me down. When I am unsure of how I should be feeling, I just try not to feel and hold it in until I can make sense of my feelings. At first, I put my son having CF into that place-- on hold. I just couldn’t put together an emotion for it. As many of you know there is a lot thrown at you and a lot to learn when you first find out. There is also a lot of responsibility, not only am I responsible for my usual wife and mother duties, but I am now a caregiver to my son with a life threatening disease, meaning what I do matters greatly. This is true for sure of non-CF children but not to the same degree. There really is no room for slack, this is a complete lifestyle change in a way that many around you don’t understand. To add to that, you feel like you can’t make connections to feel more normal by befriending other families in the same position because CF’ers are not to be around other CF’ers. It becomes easy to want to lock yourself away from the world. I have chatted with other parents on online support groups all whom have had issues in their own way of coping. I am here to tell you that depression is a big one for many parents, which is ok but should be taken seriously. I was very displeased to hear from some parents that they let the depression take over to the point that they were not doing the treatments that were needed by their children. While I believe that depression and denial are a big reaction that happens to the most of CF parents, it is still your responsibility to care for your child. Pretending that they are fine is not going to make the disease go away, and neglecting the care that is needed may cause unnecessary complications for your child. Seek counseling, or talk to your family practitioner about a way to help you cope and work through this depression. It at no point is recommended or acceptable to self medicate or lash out by neglecting your child’s care. You are allowed to be sad, hurt, cry, be angry, be scared, feel at fault, and grieve the loss of life you thought you were entering. Just do so in a healthy manor.
I was in an odd state of mind and a rather hard state of mind. The best way I could explain it is being in a zombie-like state, no emotion, just going through the motions of what was expected. I felt like when I talked to people I was telling them a story that didn’t feel like was my own. I remember, at the time I had a regular client of mine come in and she asked if I was really this calm about it all, she had been expecting a break down and it never came. I just internalized my stress (which resulted in fibromyalgia). I was on one of my quest to the health food store, Brandon was about 2-3 months old at this point, and I was telling my story with the lady helping me. I started with “my son has Cystic Fibrosis, and I am looking for additional good fat to add to his diet”. She went in to showing me stuff and told me a story of her own, about her granddaughter’s condition and medical battle. In our conversation she asked me if I knew about the owners of the health food store. I told her I knew nothing and have never met them. She told me that the owners have two sons with CF. I felt the lump in my throat and the tears starting to sting my eyes. I did not want to cry, I pleaded with God “not now, please not now”, but it kicked me and hit me hard. She told me that one of the sons was working right now if it would be helpful to talk to him. This 30 year old man was asked to talk to me and I was breaking down trying my best to not look like some crazy woman. I couldn’t seem to control the tears as he told me about his lung transplant. I haven’t even thought that far out. He went on to tell me that he had more lung issues while his brother had more pancreatic issues. I believe he felt uncomfortable with me there blubbering away, he looked at me and said he was going to have his dad come talk to me. I think this helped speaking to a parent other than staring my child’s future in the face. Not that this man was at all a horrible display of the disease, he was actually an inspiring display, but all the same it was hard to swallow. When the father, and owner of the store, came over he told me that ‘care’ (or otherwise being compliant with your medical care) is the most important thing, and should be taken very seriously. He told me the clinic they were going to, which is farther away than ours, was the best in his eyes in what he felt was most important to this fight for his children. When I left the store I cried some more and got it all out for the first time. I got rid of that lost feeling and continued on with strength after that. I would have to say it was like a tiny funeral of what you thought your life was going to be, and then a big celebration of your new forming life in front of you. I have always been a firm believer in God and have had a rather rough life. For many years I feared being a mother, and didn’t want to have kids. I just knew my strength, my ability to love, my giving nature and my need to care for the ones I love; there just was no way I could escape having a special needs child. The only way I knew to escape it was to just not have kids. It made sense until my mid twenties, the clock struck babies and I had the fever. I realized it was time to give up my fear and give in to my faith, either way God knew what I could handle. I married my husband and we got pregnant right away, this was a great blessing to us both because we really wanted to be parents. We had our first child, Elliauna, and we were in love. I wanted another right away so they could be close in age. I remember thinking I wanted a total of five children, but life changed that. The second pregnancy was a lot harsher and I really started to fight with the thought of being pregnant again. I could adopt if I wanted more right? A week after Brandon’s birth we were notified of the possibility of CF and I already knew it, I felt it in my heart since the first moment I looked in his eyes.
I personally went on an emotional roller coaster, filled with a lot of pressure to not mess up. I couldn’t handle if something happened to my son because I wasn’t doing what I needed to do. I was prepared for something to happen and I planned to deal with whatever came when it came. Until then I would do all that I could to prevent it. I frequented the doctor often for myself for many reasons, but on one occasion it was fatigue. My family doctor just looked at me and said, “I was wondering how long it was going to take you.” I was thinking what does he mean, but then he continued with the facts, “Look, you have your husband who has disabilities from the Army, you have a little girl almost turning two, and you have a baby with cystic fibrosis. You are taking care of all these people, you are a saint, no wonder you’re tired.” I guess I never looked at it as anything other than what I do. I figured everyone had something, actually I still figure that. I did get on medication for chronic fatigue and anxiety. This helped me push through the first year until I was able to calm down and get a grip on everything. I needed to be put together for everyone, there was no room for me to collapse or break. I never found myself having a great mental issue. I am an optimist so it never hit me that way, as I said before I had a rough life. I am normally not too shocked, and I am generally prepared for things to be outside the norm. I do have a problem of internalizing things, I take on the ‘I can do it all’ attitude. I want to be supermom and superwife. I tend to run myself down or start having panic attacks, or other things manifest as a product of internalizing my stress. After being diagnosed with fibromyalgia I learned to take breaks. Sometimes it’s going to a coffee shop, library, or even a walk.
In the beginning we were attending a larger church which seemed too big when it came to the nursery and the volunteers. They were nervous and refused to administer enzymes. It’s somewhat understandable, but Brandon wanted a bottle right when the pastor started the sermon. I missed a big part of the sermon and it became rather frustrating. My family was in desperate need to have the support of our church family. We found it hard to connect and ran out of energy to seek out others support. I was heartbroken. This is when I met a good friend of mine who was heartbroken to hear of this, so she recommended her church. I knew we needed a church family, but I was afraid. After a few weeks we finally agreed to check it out and we fell in love with this great little family. What we found was a little piece of true fellowship where everyone loves everyone, and it’s a true family. Everyone took on to learning about Brandon’s needs in the nursery and respected things that could affect his health. This is what my husband and I needed, we were broken, down, and very low in sprits towards other Christians. It was then that we were shown the true beauty of Christian love. I know it’s common to turn your back in anger or confusion to God in times like this, but the truth is that this is when you need him most.
For the fathers involved it’s going to be very different, and you will need to be sensitive to their feeling as well, this is no time to pick a fight. Men tend to shut down and become quite, sometimes it may even seem like they don’t care, but they do. I am not saying let them disappear and leave you to do it all, but a lot of men were never really made to cope in an outward emotional way. The best thing you can do is feed them the knowledge you gain. Let them know how you feel, but don’t point and poke at them to open to you. They will when they are ready. I found out at a certain point that it was hard for my husband to talk about this to me because he knows how much it hurts me. Yes it hurts him too, but he feels like he is the man and he has to keep it together to be that strength. After times of slowly talking about this together, he realized more where I was coming from and it got easier to talk to me. I remember we were watching a TV show that brought CF up very briefly, it was like one of those sneak attacks, we both choked up and I started to cry. My husband took me in his arms and had the first impulse to comfort me and make me feel better. He dropped his own feelings to make sure mine were taken care of. I then understood that he is the ‘Man’, the Alpha male, he leads and protects his pack at all cost. He is driven by this and then it made even more sense, what happens when you feel like you can’t protect your pack? What happens when one of your pack members has a life threatening disease that you can’t control? I assume that you then feel out of control. You feel inadequate and you feel at fault. This is a lot to soak in and deal with, he had to give up that control that he thought he had. He had to be at the mercy of the disease. He had to find out a new way to lead the pack and re route. It’s confusing to know where to re-route when everything is so finicky. It gets frustrating and scary. As women we are programmed to be care givers and we have a completely different road to the same outcome. I believe once both of you get to the end of the emotional road you meet and kind of hash out the new way of things, and then life moves on. You just have to find yourselves here in this new spot.
I kind of think finding out your child has CF is like this: your husband went to the store to get ice cream. You were pumped up for ice cream, you had all your thoughts and excitement dancing in your head and wondered what kind he will show up with. He walks in the door and he has a box of brownie mix in his hands. You were expecting ice cream and were not prepared to read the directions and get out all the things needed for theses brownies. You talk yourself off your favorite comfy chair and you get out your mixing bowl and get to work. You put the time into it although you find yourself feeling let down. On top of it your husband just stands there watching you. He is unsure really how to make brownies, so he is observing for the purpose of learning. You put the brownies in the oven and you wait the time it takes and you pull them out. The aroma hits your nose and you start to perk up. Next thing you know you and your husband are digging into the brownies and they were great, perfect, just what you needed. There is nothing wrong with brownies they just weren’t what you were expecting. But it turned out to be exactly what you wanted. I admit you never expect to have a child with any sort of special needs you get pregnant and plan for that ice cream. When you have brownies instead they end up being better than ice cream. They teach you, and you love them, they are perfect. I would never ever trade my son, he may have cystic fibrosis, but it’s not what has him. He is a normal amazing little guy who makes me laugh and has a smile that lights up the room. He is my son and that is what matters to me.
There are a lot of things going on as a mother or father of a CF child, and it is your job to head up your team to fight. If there are siblings involved you also need to maintain the relationship and support your non CF child/children. I believe this has been the hardest area for me. Elliauna is 20 months older than her brother, and she grew jealous no matter how hard we tried to make her feel special too. Once her communication was a little better, she often expressed that she was sick and needed to go to the doctor. She couldn’t understand that Brandon was sick with a disease, she didn’t know what the word disease was, nor did we feel like it could be fully explained. I tried to let her become a part of Brandon’s treatment, but then she too wanted to have a treatment, and trying to pretend a treatment was not going to fly with her. I tried giving a nebulizer cup for her own, I let her try on the vest when Brandon got his vest. Nothing seemed to change the fact that she wanted to be sick too. She wanted to be special in the same way as her brother, and as much as I tried to explain to her that Brandon was sick, she still didn’t understand. I started having just Elliauna and mommy, or Elliauna and daddy days which were mildly helpful, but only seemed to help in the moment. When Brandon grew out of baby food and started to have texture issues and wouldn’t eat much, she too chose not to eat. If Brandon didn’t have to eat, neither did she. (She of course ate, just not at our wish or when we sat down to dinner). I grew very frustrated, now I was fighting with two kids to eat. This is when it hit me, she was in the stage of wanting to be a “big kid”. She was in the whole potty training stage where this “big kid” theory is in the potty videos and books. I sat down close to Elliauna and told her that Brandon needs to learn how to eat because he is still young, he needs his big sister to teach him how. She took it and ran with it, she liked to be the “big kid” who teaches her brother how to do things. She will now come and try to hold his hand or cuddle with us during treatment time to be there for him. I also asked her to take a big breath, and I demonstrated what a big breath was. She took her big breath feeling accomplished and then I told her, “Bubba can’t take a breath like that, he has to take these medicines to be able to breathe”. We still go over it often, but she gets it now, ‘her Bubba can’t breathe like her and he has to take medicine to eat and do treatments’. She sees how Brandon has to sit there through the treatment and he doesn’t seem to be having fun, this isn’t what she wants now. Now from time to time she claims she is sick or needs medicine or wants to see a doctor, but it’s more of a common communication she hears a lot. Everyone in our house takes medicine and or vitamins and she sees that, so she takes vitamins and she is satisfied. She also gets lip gloss or Chap Stick for her lips, these things make her feel like she has something special that she needs.
Yes, this is going to be trying for a parent of a CF child no matter your condition, everyone will experience it a little different, but all in all it will be a completely different road than first expected. I hope and pray you don’t give up until you find what works for your family and your CF child/children, it is worth every second of it. Find your stress reliever and take time to do it. Although I mentioned previously about some of my favorite places to go and get away to, I also have found for me a good book helps me because I don’t have to go anywhere to read. Find a fun book, not always educational self help books. You are going to go through a lot and it will continue through the rest of your life, so get used to it. You will be living with this as a part of your family forever, so set the tone now and make the rules and life changes. For example, my husband and I loved to have bon fires, it was what we did every week most months of the year as a social thing. We put our daughter to bed and let our friends lay their kids down, or the older kids could stay up and enjoy as well. It was a way we could all get together without needing baby sitters. This had to end, it is unacceptable for Brandon’s health. I know it sounds extreme, but it wasn’t practical when he was an infant and he woke up. It would possibly work for a year or maybe two, of putting him to bed before the fire started, but then it would become unfair to him because he wouldn’t be able to come out and enjoy as he got older. We quit going anywhere with unavoidable smokers- period. Anything that could be harmful to Brandon’s disease we took out of our life. We are lucky now that things are becoming non-smoking in public facilities in most states. The best way to support your child is to change your life too. Now that’s not to say if you have a sitter for your kids that you can’t go somewhere that may be smoky, but shower and change before picking them up or leave them over night. You need to be responsible first, we ended up losing most of our smoker friends over this, but my son is more important. Our true friends that really cared either ended up quitting or would respect the smoking rules of being around our family. Many people didn’t take us serious in the beginning, but no one wants to hurt your child. So with that understanding be firm, but also educate those especially in your family. I am appointed to care for my children and my family. I am not in charge of anyone else or the choices they make. We do miss out on a lot of things that we would like to be a part of, but you can’t expect everyone to completely change how they live, you can only expect them to respect your rules and boundaries.
I will end this chapter with some things that other people said to me that seemed to make me feel better at times. There was a complete stranger who was a mother of a girl with CF, she reached out to me and I asked her a few questions. As we were about to hang up she said, “Just remember this isn’t a death sentence”. I sat there for a minute to soak that in and by golly she was right, not a death sentence at all. You can either fight or wait to die, and these days that may be a very long time. I am a fighter and plan on raising my children to be fighters. The second greatest thing that warmed my heart was from my grandmother, she told me that God chose me to take care of a special child, which in turn makes me rather special too. I guess this is very true, I felt it in my heart way before it ever happened. God made me and prepared me for this. It’s not a burden (which some may view it as), but an honor that God trusts me enough to have a child like mine. God equips us fully for what we have happen in our lives. We all have a purpose and it makes no sense while we are here, but it’s very important. We can spend our lives worrying about all the things we can’t change, or we can chose to enjoy the time we have.