A Mother Shares How She Stays Strong for her Child with Cystic Fibrosis
Photos: Make-A-Wish
Any parent of a child with cystic fibrosis knows how difficult it can be to stay strong. Seeing a child suffer from a disease that is simply just unfair would be challenging for any parent.
Kat is the mother of a girl with cystic fibrosis. She shares how she stays strong to be the rock and support for her child.
Who is Kat?
Kat is the founder of the Blooming Rose Foundation. She started the organization when her daughter Maylie was diagnosed with cystic fibrosis 6 years ago. The organization is designed to help empower the parents of kids recently diagnosed with CF. She is also a communication consultant for pharmaceutical companies as they develop tools that educate and empower the CF community.
Kat shares her story
Kat understands how you feel. As a parent herself, she knows firsthand the overwhelming emotions and swirling thoughts that can overcome you during challenging times. Kat has had her fair share of tears and emotional pain as she watches her daughter, Maylie, struggle with the challenges of living with cystic fibrosis.
Sometimes, it feels like there is no end to the suffering. When you feel like you've hit rock bottom, suddenly there's more room to go. Finding the inner strength and spirit can be almost impossible when faced with these tough times. Resilience is almost ironic because, in reality, it seems impossible when someone you love so much has to go through such unjust suffering. You do everything in your power to love and protect your child - and despite everything you do - you fail.
Kat feels like a healthcare provider rather than a mother sometimes
With a cupboard that is filled with nebulizers, medications, syringes, and blood glucose monitors - sometimes Kat feels more like medical care staff than a mother to Maylie. It's easy to feel angry and even scared, having to live as a healthcare provider - a position you never anticipated - for your child. When things go wrong, you can't help but wonder what you did wrong, or what you could have done better. Even if it's not your fault, it's hard to put yourself as the person to blame.
It's hard not to feel self-pity
Then there comes the self-pity. You never did anything to ask for this - neither did your child. But sometimes you are made painfully aware of your situation and you can feel the tears and anxiety rising from deep within, hidden away most days by the facade of strength that you shield yourself with to be positive for your kid.
When Kat takes a step back from her shield of strength, she feels the real slap in the face of how unfair the situation really is for Maylie. She's so young and has done nothing to deserve the life she was ill-fated with. From having cystic fibrosis to developing complications like asthma, peripheral neuropathy, and diabetes, it's enough to make any loving parent break down.
Maylie is able to stay positive despite the difficult life she has lived
When feeling down, Kat always remembers that her daughter is the strongest person that she knows. During times she feels particularly angry at the world, she remembers seeing Maylie sitting there and singing along to her music. It's almost as though she is oblivious to the fate that had befallen her. Kat is reminded that her feelings of hopelessness are a poor image of what she wants to have for her daughter. For Maylie, Kat puts on a disguise that is of strength and resilience. It always feels like a phony act, but she does it for her little girl.
Maylie has already had her life shortened by having cystic fibrosis. On top of that, she was recently diagnosed with more complications that would mean an even shorter life expectancy. Kat can't help but obsessively worry about these complications, and she sits often feeling helpless about this situation. Her mind begins to sink further and further into helplessness, and she gets lost in the memories of her beloved daughter being diagnosed with cystic fibrosis for the first time. What terrible, life-changing news that was.
Kat tells Maylie every day about the light in her life
Then, Kat realizes what a hypocrite she is. Why? Because every day she is constantly reminding Maylie about the opportunities for her to see light within the darkness. When Kat falls into her moments of despair, she betrays everything she has ever taught to her daughter. She reminds herself that despite the ill-fated disease afflicting her young daughter's life, they have countless blessings to account for. Some of these have even come about because of her disease.
Nothing good comes from a negative perspective
Strength and persistence are what Kat has built upon to make life better for her daughter. Kat is a fighter, and she recognizes herself again when she pulls herself out of that emotional rut and finds the inspiration to be strong again. You can't control what happens in life, but you can choose the way in which you traverse the challenges that life throws at you. Though it's only human to break down from these tough times every so often, nothing good comes out of self-pity and losing hope.
Sadness will never change reality
Kat has learned the most important lesson that keeps her moving forward. Sadness will never change her diagnosis. Reality is cruel, but life is filled with unexpected blessings where you think least to look. Sadness will actually only burden Maylie more, and will steal all the moments in-between that could have been enjoyed together.
If you're a parent of a child who lives with CF, know that you are not alone when you feel hopeless about the situation. Many parents out there are also going through the exact same thing, and you can reach out to others within the community for help. Check out the Blooming Rose Foundation to see what resources are out there if you're particularly finding life difficult to bear. You'd be surprised at the support you may find that you never knew existed. Nobody needs to endure this alone!
References
http://www.bloomingrosefoundation.org/
