I'm sorry your going through all this without his support. Please allow me to validate that you are doing exactly what any other mother in your situation would do, you are not acting controlling, you have to be proactive when you have children with chronic illness, you are their advocate, you are obligated to consider all the options and make some very important yet very difficult decisions.
He needs a reality check, he needs to be a man and learn how to accept that while life may have changed plans on him a bit and made things more complicated but not impossible and that he is missing something so much better by playing into his fears.
After Andrew was born I went through a horrible depression, crying all the time over the loss of the child that I had wanted so badly, Even when I finally got to bring Andy home I struggled with the fact that he was suppose to be healthy and happy and I literally mourned the loss of my little boy that I had been dreaming of for nine long months. Andy had suffered a brain injury at birth because he went into distress on the day before my scheduled induction, he had a blockage in his bowel caused from his CF that was diagnosed via amnio earlier in pregnancy, and the blockage ruptured and it caused him major stress ultimately leading to profound brain damage otherwise known as cerebral palsy. I felt even worse that I had mourned the loss of that perfect baby several months prior when I found out he had CF, I thought that was the worst thing ever and I had a hard time accepting I had been so arrogant, so then there I was again feeling a selfish fool for believing CF was so horrible and now look at me, what my ungratefulness had brought, the "whoa is me" attitude made me a depressing person to be around, I finally began to see something in Andy that made me realize how lucky I was. that of all the moms to be I was entrusted with taking care of this angel, and that perspective helped me realize he deserved all of my devotion to him because I would have to fight daily with insurance companies referrals, denials, med equipment then came the lawsuits. I found strength in knowing that this little boy is counting on me, I'm his mother and I better get my sh%$ together, stop feeling sorry for me and get on with my life for the sake of my whole family. a friend on a chat forum for moms with children with cerebral palsy sent me this awesome poem titled "Welcome to Holland". I think Andy was about a year old at the time and it really meant a lot to me then and it still does today because it perfectly explains how I felt and in a small way helped me gain a new perspective about my thought that because I didn't have that perfect child all my dreams and future plans were shattered and I came to realize that is absolutely so wrong, Your spouse may still be holding onto the fantasy that everything is just fine and his refusing to support you or discuss this stuff could just be his fear, if he can get beyond that he really can have a happy family. However, if he fails to support you and then the outcome of any future procedure or anything turns out to have not been the best plan of action I would assume that gives him an open door to make everything your fault and that would be horrible. So many men find it so much easier to just be angry when in reality that's not what they feel at all. Hopefully, you two can manage to talk things out at least enough to determine if your going to actually make it down the aisle but I wouldn't do it until I saw some progress, only because if I have learned one thing in my life it's that you do not marry a man under the pretense that he will improve in time, that does not ever, ever, ever, ever happen. The absolute best prediction of future behavior is past behavior and if I were in your shoes I would make sure and have a conversation about everything from soup to hay before you tie that knot.
My husband and I have a chaotic house full of kids, the youngest two are ours together and we each have teenage boys from our previous marriages, we have two kids with CF the youngest, Andy will be five on 8/27 - Cameron 16 my stepson, w/CF - Zak, 17, my first son and also a Carrier of gene -Ally, 8 Carrier of gene, I'm 35 and my husband Jeff, 43.
I initially left the hospital with Andy refusing his Gtube because I was convinced the doctors were wrong (my denial stage) and I was going to take him home and feed him and he would be fine. One nurse quietly came over and told me, "It's not going to be like feeding your other babies" and I soon came to learn exactly what she had meant. Andy was not gaining any weight and it was so stressful on me, after doing my research and talking to doctors I decided it was the only option. It's such a simple procedure and the fact is I've never heard anyone ever regret getting it and if you did it's completely reversible. My son has had his tube since he was six weeks old and now he's almost five, I've never had one problem out of it, not one, it was a life saver and he put on weight perfectly. He uses it exclusively without eating orally at all and I've gotten use to it after all these years and after everything we've had to do surgically, it was the easiest procedure. Easy to reinsert if it comes out, use to be a big worry I had but it's happened a few times and no biggy. You won't regret it.
Here's the poem, I'll post it below incase you haven't read it before.
I tend to be long winded when I do post, which is very rare, I just really felt so bad for your situation, I truly hope everything works out for the best.
Jen
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
