REDEFINING SPINA BIFIDA ~ LIVING LIFE FULL-BORE

Well, my other loyal subject in the Procrasti Nation has sent me her answers to my nosy questions.  We're closing out the month of October discussing Spina Bifida.  Karen (aka Scasmflop) over at Carson's Corner let me ask her questions about what she went through when she discovered Carson has Spina Bifida (SB) and some advice for those who may find out their child will have a disability. 

See, here's the thing, a disability does NOT mean that child's life is valueless and should be terminated.  Karen was already far enough along in her pregnancy her doctor didn't even bring up abortion as an option to her (it wouldn't have been an "option" anyway, as far as she and her husband are concerned) but others have been told that "the child's quality of life" would be poor or not worth living.  What that really translates to is "your life will be harder and you won't be able to do things others do."  Well, guess what, having a child, with or without a disability, changes your life.  It makes it harder.  It changes what you can and can't do.  You have someone else to think of, now, other than just yourselves.  If your child has a disability, that doesn't make life worse, just tougher.  And, as they say, what doesn't kill you makes you stronger.  Are you willing to let that child be stronger?

Another great resource is Spina Bifida Kids and you can follow links to other blogs and see these a-MAZ-ing kids and their loving parents.  Parents who decided not to take the "easy" road and abort these precious lives.  Parents who decided even a physically disabled child deserves a chance at life and to bring joy into someone else's life.  Here is the mother of one such child, Karen and her adorable son Carson.

M&T:  How far into your pregnancy were you when the doctor informed you there was a problem with Carson?


Karen:  32 weeks

M&T:  Did he actually say there was a problem, or just indicate a need for further testing on your baby and what was your initial reaction to this?

Karen: My Ob detected what he thought to be a cyst on myself- possibly a ovarian or uterine cyst. He said those are fairly routine but I can’t rule out for certain that the cyst is not on the baby so I am going to send you for further testing.

M&T:  What was your immediate reaction to being told Carson has Spina Bifida?

Karen:  shocked, scared, sad, mad, hurt, confused, couldn’t breathe.

M&T:  Do you recall if you noticed, at the time, what your husbands’ reaction was?

Karen:  Pretty much the same as mine.

M&T:  I know you did Internet research into Spina Bifida after learning Carson has it. What was your emotional state as you learned what it was and what it could entail for him?

Karen:  Some info helped me relax while other info scared me for him. It was a Russian roulette game with info.

M&T:  I know you’re both Christians, do you feel your relationship with God was affected by these circumstances that were occurring at the time?

Karen:  I would say that I’ve realized more how much He is in control and not me.

M&T:  What about your marriage relationship, how was it affected at the time?

Karen:  We have a very strong relationship and this really didn’t seem to help/hinder. We just stuck together, leaned on each other, cried together, prayed together, but also laughed together and focused on what really mattered.

M&T:  I know when Carson was born, they insisted on a C-Section birth in order to reduce as much trauma to his little body and spine as possible, were you able to see him immediately after his birth?

Karen:  It was about an hour after his birth before I was able to see him. He went straight to the NICU and I was transported to recovery. I didn’t think I would get to see him till the next day since he was to be transported immediately to Childrens… I had to stay at Hollywood Pres. for 24 hours and recover. However, while I was in the recovery room I overheard the nurses talking. One nurse kept asking about moving me out into my room … she said I was ready and they needed the spot in the recovery for another patient. This other nurse adamantly told her that I was not moving anywhere till I got to see my baby. He was on his way to see me and we were waiting. I quickly called out to her and ask if I had heard her correctly. She said, oh honey yes, you are gonna see your baby. I squealed!!!! Sure enough about 30 minutes later they wheeled him into the room. He was in a transport incubator. I cried with joy. He was so perfect. They let me reach my hand into the hole and touch him. I just stroked his face over and over and prayed for him. They stayed for probably five minutes then he had to transfer. It was amazing!!!!

M&T:  Do you recall your emotional state at that particular time?

Karen:  Overwhelmed…. so many emotions I can’t even explain it. Joy, wonder, anticipation, fear, love, exhaustion.

M&T:  Did you, at any time immediately after his birth, consider all the things you and your new family would be facing in dealing with Carson’s Spina Bifida? Can you tell us some of what was going through your mind at the time?

Karen:  Not really. His birth and seeing him made me just want to see him more, hold him, and take him home. I was worried about him in some ways but also just felt a perfect peace that God was taking care of him.

M&T:  I know that there have been some physical difficulties for Carson, he had a broken leg immediately at birth and it’s broken a couple of times since then. How fragile are his bones at this time? Is he able to bear weight on them, yet?

Karen:  His bones are fragile, how fragile is unknown exactly but we have to be very careful. Weight- bearing actually strengthens the bones so we currently do about 30 mins 3 times a week in a mobile stander. The more the better!!!! This is why we need to get his braces so badly. He needs more standing time, but currently he requires a supine stander in order to do that. We cant afford to purchase one so I have to take him to therapy and do that, and that’s limited for time.

M&T:  How much time do you have to spend on a daily basis to work on Carson’s physical therapy; getting him to get up on his knees, working on his crawling, whatever other exercises the therapists have given you for him. And, how much more difficult is this when you have another son who’s 6 months old and probably beginning to think about mobility, himself?

Karen:  This is hard to answer. Each day is different… Part of that is having a 6 month old, and part of that is just daily schedule. Also some days Carson seems willing to work and other days he just doesn’t. I’ve learned when to push him and when not to push him. Pick my battles- I guess. I’d say on average we spend 1-2 hours a day on physical therapy activities.

M&T:  Give me your best piece of advice for women facing the birth of a “disabled” child and name three web-sites you think would be good places for them to go for support and/or information.

Carson and one of his many "girlfriends"

Karen:  It’s gonna be fine. Your baby is a precious, amazing, and a special gift. There’s nothing that is going to change that. Love is not based upon physical expectation. Do not grieve or fear, just trust in the Lord and His plan. Don’t lose sight of the great blessings you do have. Cherish them, and search for everyday wonders, and miracles.

 As far as websites go it would depend upon your unique situation. There are online support groups for everything now-a-days. I recommend finding friends who understand your situation… it’s been one of my biggest blessings and comforts. Try babycenter.com, facebook, or Parents.com.

BREAST CANCER AWARENESS: BRCA2 & LIFE

I'm sorry this interview has taken so long to publish.  Yes, I know, October - and Breast Cancer Awareness month - are almost over.  I am the Queen of the Procrasti Nation and I seem to have some very loyal subjects! :) 
That said, I have a friend named Angie who agreed to let me ask her some personal questions about some things that have happened recently in her life. Things that would send most of us to a dark, scary place if they happened to us.  Angie's been lucky in that she, herself, has never had cancer although her mother died from breast cancer and her maternal Aunt Julie had it as well, although her aunt did not have the BRCA2 gene.  However, Angie and her sister both have the BRCA2 gene which gives you an 87% chance of having breast cancer as opposed to the 7% chance the rest of us face.  She's gone through the emotions, the ups and downs, the questions and, ultimately, the decision to have her breasts and uterus removed to prevent breast or ovarian cancer from striking her life.  Here is the interview she graciously agreed to:

M&T: What made you decide to get tested for the BRCA2 gene?

Angie: This is a little crazy, but at my last "annual" when my Dr was doing the breast exam, she commented on how dense my breast tissue was which made it SUPER important for me to do the self exam regularly. I asked if that would be a problem if I ever wanted to get implants because the girls where heading south, and she kind of jokingly said that with my family cancer history, I should get tested for the BRCA gene (which stands for BReast CAncer) and if I tested positive I would basically get a boob job on my insurance's dime. When I left the appointment I called my sister and asked if her Dr had ever suggested getting tested. Her Dr hadn't, but she was going the next week for her visit and said said she would ask. Her Dr said she would absolutely recommend getting tested. My sister tested positive which then made it more important for me to get tested and after some prayer, I decided to do it.

M&T: What was your immediate, emotional response when you found you had the gene?

Angie: It was very surreal. I remember thinking prior to the test that it might be awesome to get new, young, breasts. When the test came back positive, the reality of the situation was anything BUT awesome. The gene increases the risk of breast cancer from the 7% chance we all have to an 87% chance. They are basically saying that it's no longer IF you get breast cancer, but WHEN. It also increases the risk of ovarian cancer to 57%. I think I was mostly in shock for the first couple of weeks.

M&T: Whom did you instinctively turn to in those first hours, days, weeks as you dealt with this new knowledge and why?

Angie: The people closest to me were such an amazing source of comfort and strength. My husband was absolutely my rock. My sister, who had already tested positive, and could uniquely understand exactly what I was going through. My family and closest friends. I knew that this was not something anyone should go through alone. I needed prayer. I needed wise counsel. The direction that the medical community was HIGHLY suggesting was extreme to say the least. I needed to know that even though I had to walk this path, whatever decision I made, I did not have to do it alone.

M&T: Why did you decide to have the hysterectomy and double mastectomy?

Angie: The first two months I had extensive testing. MRI and ultrasound of the breasts, internal ultrasound of the ovaries, extensive blood work looking for anything out of the ordinary...NOT FUN. I felt a little humiliated by the whole thing and this was the testing they would want to do every 6 months so that anything abnormal could be detected early. It wasn't just that. The more I researched, the more I prayed, the more I got counsel from those I trust (who were also getting counsel from friends and family in the medical field), the more I knew that I wanted to take the potential for breast and ovarian cancer out of my life's future.

M&T: Did you come to this decision on your own or did you talk to your family?

Angie: LOTS of conversations with family and friends!

M&T: How supportive were they?

Angie: Everyone was beyond supportive. Those who initially were not so sure I should take such a drastic step, all came back to me and said they thought I should go this route.

M&T: Your doctor?

Angie: To my doctor(s) there really was no other option. My sister experienced the same thing and she has difference insurance. I was truly blessed with the surgeons I was referred to, which was so helpful as I moved forward with my decision.

M&T: What information did he/she give and how helpful was it?

Angie: I was actually sent to a genetic counselor for the testing. She explained everything in great detail prior to my being tested, down to how the mutation of the gene happens. She also explained all that might be in my future if I decided to get tested and the test was positive. The information I got from her was extremely helpful. I understood what was going on in my body, what the options were for me and why.

M&T: Did you do an Internet search on the information your doctor gave you?

Angie: I did! I would say for the most part it was helpful. I liked finding other people who had experienced the same thing. There is a lot of information out there! Probably the first time I got really scared was when my sister's doctor had given her a website that had pictures of reconstructed breasts. The site was password protected specifically for women who would be having mastectomy and reconstruction. Those poor women! Some of them did not have great results and it was often because they had cancer - the chemo, the radiation, the damage to the tissue caused issues with the reconstruction. I just kept thinking, I'm going into this with healthy tissue, I have a great surgeon, I'll be fine.

M&T: Did that help or make things worse for you?

Angie: I think it helped ~ it just felt good to feel a little proactive since I felt a little like I was on a runaway train. Gathering information was at times overwhelming, and I knew that I had to be careful because not all of the info on the Internet is accurate.

M&T: Is there a site or sites you would recommend to others?

Angie: The most helpful site wasn't for the breast cancer issue, it was for the hysterectomy. The site is hystersisters.com and I was on there many times a day after my hysterectomy. It is a great resource. There really wasn't any one great site I found for the brca2. I did go on youtube and searched for tram flap reconstruction - oh my goodness! Glad I did that after my surgery. I was so sore and also couldn't get my brain around how it was actually done (even though my Dr had explained it)...not something to watch if you have a weak stomach!!!

M&T: What was your first post-surgery reaction?

Angie: I have a little trouble with nausea post-surgery. They tell you to let your anesthesiologist know if you have any issues and they give you something for it. Never really helped me! Such a bummer to toss your cookies when your abdomen has been cut open and abdominal muscles moved! In general, post-surgery is just hard. Your body has been traumatized. I found that my support system post-surgery was invaluable. You have to let people help you. Also, super important to take your pain medicine. I thought the medicine was the cause of the nausea and so I tried to take as little as possible. Come to find out, the pain was causing the nausea. The doctor told Pep to set timers to insure I took the meds at the proper time. Once we did that, the nausea ceased. I think I wanted to be so strong, and I didn't want to be dependent on pain meds. Only made that mistake once ~ unfortunately that "once" was for about a week!

M&T: How did your first post-op visit go?

Angie: Post-op was important for me. There are so many questions that I didn't know to ask before surgery - all of the is "this" normal, the way something feels or looks. I was so weak. There was really no grid for what to expect, so seeing the doctor and being assured that "all is well" was very needed.

M&T: How is your health today? Are you as active as before the surgery?

Angie: It has been a year and ten months since my 1st surgery. Recovery was a long process. Whenever I was in pain or discouraged by my progress Pep would say "Next year at this time this will all be behind us." That helped at the time. It took longer than I wanted, so I just had to be patient. I am in great health today. I started working out again this past March and it made all the difference in the world. I could barely do anything when I started. EVERYTHING was hard, even walking to the car. The thing is that the real progress was made when I started exercising. Important to note that I had some complications and I waited to exercise (work out with weights, etc., prior to that all I did was walk) until the doctor gave me the green light.

M&T: Really nosy question for who are couples facing this decision; did this bring you and your husband closer or did it strain things for any length of time?

Angie: I think the answer is both. It was a hard season. Pep did everything. I lived in the recliner. There was no physical intimacy for quite a while. At the same time, Pep did everything, I needed him in a way I never had before, and he rose to the challenge, emotional intimacy on a whole new level.

M&T: Any lingering problems from the surgery?

Angie: I have a "bulge" in the lower abdomen. It is uncomfortable, with a pain on the right side. They think a nerve may have been damaged and there is nothing really that can be done for it. It is also much improved since I started exercising. There was a time that I couldn't stand for any length of time because of it, but now it is rare that I have to get off my feet because of it. The skin on my breasts and most of my abdomen is still completely numb. They say the nerve endings may find their way back or they may not so this may be it. I have also had problems with pain during intimacy since the hysterectomy. We are still trying to figure that one out!

M&T: Would you do it all again, given what you know now?

Angie: There are times when I think what I did was crazy. "What was I thinking" kind of thing. This is usually when I'm frustrated by the "lingering problems." When it all comes down to it though, I know I made the right choice, so yes, I would do it all again

M&T: Give us your three best pieces of advice for others who may be facing this decision.

Angie: ~Don't be afraid to ask questions, lots and lots of questions. I wish I had asked more questions!
~You really do have time. I think I felt a pressure to make the decision right away. I probably would wait a little longer if I had it to do again. Let them monitor me a little longer, although, in the end I would have made the same decision.
~Listen to You. What do you think? This is something that you have to do, no one can do it for you. When it gets down to it, it is your body. Listen to the still small voice inside, and trust that it is the Holy Spirit guiding and directing you.

OCTOBER ~ HEALTH AWARENESS MONTH

You know, our health is nothing to mess around with.  I know, some of us are disgustingly healthy, over-all; and, I know, some of us are crazy hypochondriacs (or afraid of becoming one!) but we need to educate ourselves about things that can seriously affect our lives.  As in, end our lives or, if you're lucky, just change them in a drastic way.  To find out which month of the year focuses on which health issue, you can visit the PCI Health Training Center's Health Awareness Monthly Calendar for more information.  They'll also give you links to each site that can educate you about the specific issue that may have touched your life.

I have two issues that have, in a very small way, touched my life so October is the month for me.  The two issues celebrated in October (yes, "celebrated," you'll understand why as I go on) are for Spina Bifida Awareness and Breast Cancer Awareness.  Neither one have affected me, personally, but I'm friends with those it has.  One has the BRCA gene (which guarantees an 87% chance of having breast cancer and over a 30% chance of having ovarian cancer) and the other friend has a child born with Spina Bifida. 

I'm going to ask interview-style questions of each lady and post them here this month so you'll get at least two more posts before the month is out.  The first one will be for Breast Cancer Awareness.  This can affect both men and women (yes, men, you can get breast cancer, too. Be vigilant!) but my focus in the interview is (obviously) going to be more toward the feminine POV.  There are things you can do and places you can go to get information on either of these life-changing issues and I'll try to have links to them.  One place you can go to support research for breast cancer is Harry & David, a site that specializes in pears. Yes, pears! They have special ones for the month of October to benefit breast cancer research, chocolate dipped pears that have been dipped in two blends of chocolate, one of them pink. (droooool!)  If you know someone you'd like to show support for, this is a good way.  They're a little pricey, but, remember, 20% of the proceeds from these particular pears go to breast cancer research.

Not a bad way to be extravagant OR show your support!

(stay tuned!)