Mothers of children with terminal or life-shortening diagnoses, please, speak to me.
My daughter has a cough and I am grieving. This is wrong, this is unreal, this is not what nature intended. Many, many, too many, of the children at her preschool have a cough right now. Her cough is their cough. Their parents are not grieving.
My daughter has cystic fibrosis. Any respiratory infection she gets could, in fact, reduce her lifespan. Make her die younger. Make her die sooner. Steal her days. CF is a game of avoiding lung damage as long as you can, to forestall the day when you are told that the next step is a double lung transplant or coming to an acceptance of your imminent mortality. CF is an incurable, terminal, genetic disease that children and adults die from. CF is what they said when they called me when she was 5 weeks old. I am trapped in that moment, in that phone call, still bleeding, still there.
She's three now, and she has a cough, and it's night time, and in the dark, I am grieving.
This isn't right. This isn't reasonable. This isn't realistic. This is, however, my life right now.
Tell me how you breathe in the dark when you know your child will die. I know, oh, now I am blighted to know, that all our children will die. Would that I were a better, more coherent Catholic, that I could blunt that awareness. We're supposed to die first, as grandmothers, and not know, never confront, never feel it, never face it.
My daughter has a cough. A stupid cough. A trivial cough. And I am grieving.
Someone save us. Please.
My DD doesn't have CF but we are sort of in the same situation. Because of her CP she has severe respiratory issues and any one of them could take her away from us in a matter of minutes. So far she's done well...lots of hospital stays, breathing support, etc, but we just never know when THE one will be. Her pulm doc says it's almost always a respiratory illness that takes these kids. And her life expectancy is not long. She's already outlived over 75% of her peers. We're looking at early adolescence at best. It sucks. I don't know what else to say. I grieve every day, to some extent, though I try not to dwell on it.
Sending you and your daughter prayers of healing and peace.
I couldn't read this and not post. You write so eloquently about such a difficult subject matter. I pray there will be a good treatment for CF very soon.
So scary, so hard.
My best friend's sister in law had CF. She lived into her forties, despite her parents being told she would die in her teens, or childhood, or soon.... grieve the diagnosis, but your little girl is still here, and she could be here a good long time.
Michelle was a vibrant, alive person who brought joy into the world and led a full life for more than 40 years. It wasn't always easy. There were lung transplants. And it still wasn't enough, but it was far, far more than she'd ever been led to believe she might have.
I've held my daughter through god knows how many bouts of croup...her genetic condition means narrow passages, and the least inflammation shut them down when she was tiny. We were told when she was very young that 70% of kids with her condition died before age 2, usually of respiratory issues. Now, six years later, the number they tell parents is 20% will die by age 5. The medical landscape is changing so, so quickly.
But it was the first years that were the most terrifying. Getting to age two. Then to age five. Then older than the last little girl who'd died of her condition. Now, she gets sick... and I don't panic. But my teenager, watching her sister this morning, just came up and told me that she had to fish a corn chip off her sister's trachea because she'd almost choked. Again. We haven't had to do that in years. I'm not sure the worry will ever go away, and one of these days, she will die, and it will probably be far younger than one ever would expect one's child to die. The oldest person we know with her exact deletion is in her 20's. The oldest child to die of her condition was 16. (We only know of about 10 kids in the world with her exact condition. 3 of them are now dead.)
Jenrose, Mama to DD1, born 1993, DD2, born 2005, and DS1, Jan. 2012. Babywearing, cosleeping, homebirthing mom with fibromyalgia and hashimotos. DD2 has a rare chromosome disorder.
It has been a few weeks since this thread was started. I hope your daughter is feeling better. I'm not the parents of a child with CF, but I wanted to respond. My husband has CF. I'm not on MDC as often as I have been in the past (and I very rarely post), but, feel free to PM me. CF has a very strong online community. I would recommend http://cysticlife.org/. It is an inclusive community of CFers, family, friends, etc. It also has excellent resources. All the best to you and your family.
I realize this thread is quite old now. However, you asked a question and no one was able to answer you. I don't have a perfect answer, but I do have an answer.
For years, I did not deny the finality and terminality of this disease. I have known, and I have known that with his liver disease, my son will die sooner rather than later. However, you cannot sleep at night if all you can think about is the final chapter.
You cannot know when the final chapter will be for any CFer. You just cannot. Some live long, lives. DH's best friend lived until she was 43. Some die far too soon. You cannot know what the outcome for your child will be as you walk this journey.
What you do know is that you have many chapters of living to fill in first.
For years, when the overwhelming pain of the final chapter has washed over me, I have told myself one thing. It is not my time yet. Today is not my day to grieve, and so I will not grieve too soon. I set aside the pain and the fear and the unknown future and I lived life every day to the best of my ability to live without an elephant in the room. Otherwise, I would have buried him while he was still alive.
I cannot tell you how to walk when it finally IS your time to grieve. I have only learned in the last week that today IS now my time to grieve. My son's time is nearly over. We are waiting a hospice referral, since we will not seek new organs for him. It is much harder when I cannot tell myself it is not time for me yet. It worked for years. However, when the approach of the medical team changed, it has become much harder. I'm actually usually not that immobilized unless I am thinking about it....or interacting with his medical team now. His liver clinic nurse was bawling yesterday and I have yet to get my feet back underneath me since then.
Until it is your time, you have to find a way to move forward. It's not easy, but the grief will immobilize you long before it is necessary. You have to find a truce and peace with this monster so that you can be busy living with your baby. That is what she needs from you. Many adult CFers decribe not knowing how to live as an adult because their childhood was focused on waiting for their death. Right now, half of US CFers live past 18. In Canada and Europe. that number is significantly higher. Your child has as much chance of living until adulthood as she doesn't. I truly believe after researching how Canada and Europe have the signficant majority of their CFers living into their 30s that the key is nutritional status. You ARE strong enough to hold this grieve for you and for her. That is what you must do as a mother. You didn't ask for it, but you must. So, you find and tap into what gives you strength and you focus on living with her until you absolutely cannot focus on that anymore.
This was so eloquently written that it tore my heart out. I have NO idea how you feel - I cannot comprehend. I want to give you a hug, and any emotional support that I can possibly offer.
Certified Crazy™ Wife to my Spiderman husband (Aug '01)
Super proud Momma to DD (Jan'00), DD (Apr '02) and DS (Jun '04)
Always loving and missing our Baby James born sleeping at 19 weeks (July '03).
Cornelia- I cannot imagine your pain and greif...I am so sorry.
Siobhan- I do not know your pain either, and I'm sorry that you are going through it. I can offer some small glimmer of hope....one of my colleagues lives with CF. He is almost 40 and has two beautiful children of his own. By all accounts, he is doing well. I know that this doesn't take away your grief and fear, but I hope that it mollifies it somewhat. I hope that your daughter is doing better.
Mama to F (3/09) and S (3/11); and never forgetting my babe gone too soon (4/10).
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