Ehlers-Danlos Syndrome and motherhood

I have a condition called Ehlers Danlos syndrome type III ( or EDS III) and am a mother to two little girls. I am extremely hypermobile and dislocate my joints on a frequent basis. There are many many symptoms and complications that this condition can cause, but in general I get on well unless ill with a virus or if my body is overtaxed in some other way.
Dealing with one's own physical issues is one thing, but having to see your child go through it is a totally different animal.  The statement below is of a mother and friend whose thoughts and feelings reflect what i know so many of us feel, not only observing her children suffering, but feeling inadequate as a parent because of her own physical barriers.
The helplessness a mother feels when their child has a congenital condition, regardless of what it is, is similar, I imagine. Thank you Laura for being willing to share your inner most feelings of this subject.

"My poor wee bendy boy. 3 years old and it's so obvious. Last night he bumped heads with our 2 year old friend, they both cried, she looks fine, he has a cracker of a purple bruise with little red spots around it.
Never mind all the translucent skin and the stretchy skin, or the fact that when you hold his hand you can literally feel his hand pull away from his wrist. It's the same with his feet and hips. Pop crack pull, ever since he was tiny.
My 7 year old daughter most likely has it but it's not as severe.
Do any of you feel sick to your stomach that you gave this to your children? I console myself with the fact that given the facts, I would choose to live with EDS than never have been born but I hate that I have caused them what could be a lot of suffering.
I myself am in a wheelchair and a lot of pain, I have Dysautonomia and the chronic fatigue hugely affects my life. I can't even be a proper mum because of it. Then I have Crohn's too, so they have a super high chance of that as well.
At the time I was told by a moron doctor that there was a million to one chance I'd pass it onto my children. Also it would cause no issues with pregnancy.
I blindly went ahead and had two children. Then I started getting worse myself (because pregnancy messed me up so much), so I did some research. I had been told that this was a fun and simple condition with no bad effects.
LOL! or *sigh* (it depends on the day). Now I have two babies who will likely suffer because of what I gave them.
I wouldn't give them back for all the world and I don't regret the pregnancies which crippled me but I do wonder if I would have had children had I known what I was facing and that they could face it too.
I just feel guilty. They're happy, they will have a safer less damaging life because of my research but I still feel really guilty. Do you?"

"A Nursing Story" : distal and proximal esophageal atresia

"In 1990, as an essentially single 21 yr old and 3000 miles away from my family, I gave birth to my beautiful daughter, Nirvana. She was 5 and a half pounds and had distal and proximal esophageal atresia. because there was so little esophagus, she had to wait until she was 20 pounds or 1 yr old to be reconstructed. In the interim she was to be fed via g-tube and the doc brought the tiny upper portion out the side of her neck for secretion control and mock feedings. 

For that year i nursed her on demand with milk squirting out of her neck, and pumped and g-tube fed her every three hours. I diapered both ends, had tons of laundry, my bed was ruined and my entire life consisted of taking care of my babe. At one year old, she weighed a teeny 12 pounds and the surgeon opted to reconstruct. He took part of her stomach and made an esophagus. I am convinced that the healing properties of my milk healed her surgery sites quickly and her g-tube was removed within 6 weeks. She was so accustomed to nursing for comfort that she quickly transitioned to nursing for nutrition. Many, many years later I found that so many of these babes that have this type of surgery take years to get rid of the g-tube feedings, some never. And in fact they rarely do this type of surgery and instead chose to put the esophagus in traction and stretch it in order to get the oral feedings established more quickly. The choices I made were purely from the heart with very little guidance, I feel so blessed that this path unfolded before me....." ~ Leigh 

(  Leigh says that the above picture is"... one on line that is an excellent representation....the only thing that isn't clear is how super red and meaty the esophagostomy looked....i even had a wic person seriously offend me by saying, "my, that's a deep gash" i was so pissed and maybe still am.... read my file, dumbass....")

       So many of us see a different side of nursing than that which is advertised in the media. The songs about nursing our babes, and books we read depict minor problems which are easily overcome... this has not been my reality. Nursing ( for this blogger and the woman whose story is above) is a long hard won journey, where often the reward is not the warm and fuzzy glow of motherhood, but the knowledge that despite everything you did it.. your child is stronger and healthier because of the sacrifice. So I will post these stories of triumph over the seemingly impossible, so that others might know that even in special circumstances.. it can be done. With respect to those who choose another path (perhaps for some at least) knowing that someone else was able to persevere, might help them do so as well.


AOB