I wanted to share with you something that has been on my heart. As a mom, it is difficult when your child is sick or has a cold. It is unreasonable to expect a mother to look at an x-ray or a test result and realize that there are things in your child that are unusual or like no other child. I admitted last night to a friend that there are times when I think to myself, Thomas is fine. There is nothing wrong with him, I'm not sure what all the fuss is about. She was immediately appalled and thought people had said that to me and I quickly explained that 'no' no one has ever uttered those words to me. I say them silently to myself. It is only when I go through the list of clinical issues that I realize once again that Thomas does have a rare congenital anomalies that are odd and unexplainable. There is no resource for me to run too, there is no local support group, foundation or awareness day. So, here we are, but where are we?
There are many times when I picture myself just letting go. I vision myself holding a full shopping cart in the parking lot and while pushing it to the van, I just let go and let it roll on its own. What a fabulous feeling. We are so busy with our daily lives we don't allow ourselves to feel real emotions. There is no time to grieve those we have lost or things that have been taken away from us. Denial is part of the grieving process and when times are difficult to comprehend it is a natural part of emotions. Here is an exert from the Mayo Clinic that explains denial in a great way: Denial is a coping mechanism that gives you time to adjust to distressing situations The complete article is at the following link: http://www.mayoclinic.com/health/denial/SR00043 I think sometimes the denial keeps me from asking for the help that I really need with the boys and with funds. I haven't been researching and reading like I was a couple of months ago. I don't want to miss life but I don't want to not be moving forward. There are days though where I literally just stop and breathe.
In a very small community of people who share at least one common issue with Thomas, I have met some amazing people who have been in my shoes for many years. She has been through the denial and is past it. I wanted to share with you her words this morning that meant so much to me. This is shared from our MD Junction board with permission from Lisa to print on my blog from her heart:
Rare diseases are a tragedy and a calling for all of us collectively; yet the nature of these conditions breeds a sense of isolation and loneliness, especially when you suffer from constant pain, stress and exhaustion. For this reason and so many more, having a cohesive support group like ours is vital. At the risk of bringing my work home (hard not to because I "live" spinal deformities), I want to just emphasize the contribution that each person with a rare condition, or each person living with someone who has a rare condition, brings to the table. I just want to draw a parallel to Spina Bifida for those of you who are not familiar with that spinal defect.
Spina Bifida has always been seen as a pediatric condition because "everybody" who had it, received intensive, (short sighted) pediatric care-it was the best that was available until several years ago- they all died though before they reached middle adulthood. As a result of that narrow perspective, all medical research and clinical care centered around pediatric patients. We had a limited knowledge base that has persisted until now.
Because of advances in general medical care, people with SB and other degenerative conditions are expected to live into old age now, but sadly they will be living in pain and with numerous chronic diseases -some that are caused by living 40+ years with SB, and some that occur in the general population. The problem is, we didn't plan for them because our focus was on pediatric issues. Now we don't have a working knowledge or best practice guidelines to follow in the care of adults with SB. They are uncharted territory. You could easily switch the letters from SB to KFS because it is the same story. The people who are in their 2nd 3rd and 4th decade of life are trailblazing for those who will one day be in their shoes. They will teach us how care, or lack of understanding over the lifespan, affects health and quality of life. In rare disease management, both the young child, diagnosed before the body has sustained damage ;as well as the person who wasn't diagnosed until much later in life are vital in the search for answers-cause and prevention.
My daughter has had numerous x-rays and CT scans over the past 26 years. Independently, each scan didn't seem like a big deal...afterall, it was only "one" set of x-rays or one CT on each occasion. Overtime (and she is still young), she has absorbed so much radiation in her tiny frail body, and taken so many different meds from so many different helpful doctors, that it will be a miracle if she can ever become pregnant or have a baby..or if she lives to see middle age. Because doctors didn't have the knowledge to employ a long term view of her health and future quality of life when she was young, and we didn't know enough to advocate for her, they thoughtlessly provided care that served the purpose of the moment, but has impacted her adult life in a very negative way. In one hospitalization for "exacerbation of pain and spasms", she had 5 CT's that I wasn't even aware of, and she wasn't coherent enough to understand what they were doing to her. Each CT scan is equivalent to about 70 x-rays. Over the past 2 decades, she has consumed so many prescription medications that I worry she won't have a functioning liver or kidneys to get her through a long life. And it goes without saying that her tolerance to opioids and muscle relaxers is unmatched. She can take a load of drugs and still be wide awake, screaming in pain. This is the wisdom we get only in retrospect. The point is there are to many unknowns. Why don't we know before birth that a child has KFS? Why don't we know how to care for people across the lifespan who live with progressive diseases?
Please don't think I am saying we shouldn't have diagnostic tests or medications. I'm not. they are valuable and are all that we have for now, but we need a holistic approach to our thinking and toward medical care- from day one. So those who are parents of the young and those who have the battle scars from living many years with KFS need to be talking to one another..and more importantly, we all need to be listening, because there is nobody out there who has as much knowledge of how KFS affects a person over a lifetime than this group does-not anywhere in the world. We truly are leading the way and everybody matters in the endeavor.
Love to you all and thank you so much for having such a depth of caring that we can discuss all topics-no matter how difficult among the group. I warned you- random thoughts spurred by an intense month I guess. thanks to all for being part of this amazing group! Lisa
I am a nurse, and the mother of 2 children born with neuro-biological defects that affect them at all levels of their lives. My 24 yr old daughter was born with KFS and my son was born with a female body. Both have suffered from physical pain, loneliness, and are completely dependent on me for their care and emotional support. My goal is to ease their discomfort and help them be healthy, productive adults who can feel proud of their physical appearance and relationships. But that's difficult to do because both KFS and GID are very broad and complex conditions that affect every system in the body. I am looking for mothers and interdisciplinary professionals to help excite others to learn more about and help people who suffer from neuro biological defects and their comorbidities. My heart goes out to all of you who struggle with debilitating conditions, but still smile and continue to go after your dreams!! You are true heroes!
Love you Lisa!! Thank you for being an advocate and sharing your struggles with us as a fellow mom. Thomas will benefit from it!!
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