Our old CF Commercial that plays on MCTV. Still working on this years.

Saturday, March 29, 2008

Susanna's Story

I know I said I would wait for M's approval before posting Susanna's story but I know she's busy with Big Chris' family this weekend & I have no doubt she will be happy I didn't wait to post it!

Susanna sent this as a comment to us last night & as soon as I read it I wanted to share it with all of you. I was so blessed by her positive spirit & obvious devotion to her family & I was thrilled when I got to the end & saw she had given me permission to share her story! The Lord's timing is always amazing. If the events of yesterday hadn't occured we might never have connected with Susanna. What some of you won't realize right off the bat is that she & M are the same age. Obviously they have much more in common as well. I hope you will add Susanna's family to your prayer time as I have.

Susanna, congratulations on your new baby boy! I pray that the rest of your pregnancy is enjoyable & uneventful!! Please continue to share your story with us & we will share it on our blog!

Dear Dear M, Hi. I just found your blog tonight and there are so many things that I would like to say to you that I'm afraid I won't remember everything long enough to say it like I want to, but here's my try:-)
First, Lil' Chris is absolutely adorable!!! (I could say that over and over and not feel like I've said it enough:-) To see his smiling face no one would ever pick him out as having a problem.

Second, an introduction. My name is Susanna. I am 27 years old and the proud mom to 4 extremely active, beautiful, high energy (I said active and beautiful didn't I? :0) children, 3 of whom have/had CF. Like with lil' chris, no one would ever have a clue that they have a care in the world. As a brief background,we had no warning about the possibilities of CF in our families. So when our Timothy was born 3 weeks early with a ruptured colon (due to a mucus plug) we had no idea what was going on. Obviously we got the crash course on CF. Our little Timothy survived and thrived and lived an awesome "Normal Life" (I'll come back to that comment later) We dealt with treatments, meds, the colostomy (from the ruptured colon)...we took it all. Oh we had the emotional bottoming out, but (short version) we came to the conclusion that we'd deal with it, do everything the best, and give him the absolute best life possible. And as others have stated on your blog, we are believing and working for a cure, with the advancements made in the last 20 years...by time our children are 20 years old...(but I'm getting ahead of myself)

Third, I have to tell you that when our Timothy was 6 1/2 months old he was doing awesome and it was decided the colostomy could be reversed. We were thrilled. Unfortunately something botched up with the surgery, the stool seeped back into the abdamon, the infection got into the blood....We lost Timothy at 7 months and 2 days old. (It's a longer story and I don't mean for anyone to think I can tell it so bluntly or without feeling because I assure you that is far from the case.) He was our only son, our first born, our life. And he is still missed terribly even though Dec. would have seen his 5th birthday...

Fourth, (I'll go on with my list) We decided to have more children. Here's a couple reasons why. One reason was... When we were in public we would see people that were severly crippled, mentally retarded, or be extremely deformed. I distictly remember looking at my husband and saying, "There are some things a whole lot worse than CF" People with CF can live extrememly productive, full lives. They can go to college, be very intelligent, become the doctors and researchers themselves, even have there own families (the list could go on and on)...they can make an awesome impact on the world! A second reason...Even while Timothy was still with us, we decided that we never wanted to tell Timothy that he "Can't have any brothers or sisters because we don't want to take the chance that we might have another one as "Bad" as him". We never wanted him to feel that 'what he had' was soooooooooo terrible. After losing our precious son we still decided the joy and fullness of his life far outweighs the pain and sadness of losing him. Even at only 7 months old his awesome little smile and friendly ways had touched thousands of people. (Seven hundred friends and family were at the funeral alone.) We feel our baby Timothy lived a very joyful, full life.

Now, Timothy has 3 siblings (and a fourth on the way, though this little guy was a bit of a surprise). Our boy, N__, is not even a carrier! (go figure...from one extreme to another. but we are very thankful to God for that blessing) J__, our "Little Princess", has CF and had a pretty rough first year with failure to thrive and lung issues, but for the last year and a half... only in the hospital once, putting on weight, and a gorgeous bundle of sweet energy!!!! C__ also has CF, but has done great so far. No hospital stays, no lung infections, a typical 9 monther that's starting to take her first steps!! She's a fat "Little Miss" and the first to have her daddy's brown hair and eyes that look like they're going to turn brown(Like his:) (All the others have my blonde hair and blue eyes:-) (But they ALL have had their dad's cowlick right in the front of their hairlines!!! Thanks alot dad!}:0) And back to the 'fat' part, all of us CFers know how we CHEER fat rolls!!And oh, how they LOVE each other! If one stays the night with other family, the other is constantly wondering where __ is and how she/he's doing and can we call and talk to them....they are best playmates.

Now, there's NEW Baby Boy... I realize reading this you may think that I'm not taking the disease serious enough, but please believe me, we do. When I found out I was pregnant this time, I cried, a lot at first. I just wasn't sure I could deal with the possible pain again. I haven't been down the whole CF road yet...I don't know the future for each of the children... but what I do know is that God has given us another special gift, this time a little surprise, and...you guessed it... we are going to help him life to his fullest potential with or without CF.
There's a whole lot more I could say, (and yes I know I've already written a ton...is there some kind of award for the longest comment? :-) Let me just encourage you. (1) Hang in there. Even though I talk of "living life to the fullest" that doesn't mean that you have to take him to the petting zoo at 9 months of age! But it also means that you don't have to only go to Wal-mart at midnight for the rest of his life just to keep him from the crowd. (2) Enjoy being "mom" to an incredible little boy and remember "you are the mom" you can most likely trust your instincts.(3) It's true some people understand better than others, but don't get too discouraged with those that don't understand now, they (especially if we're talking family) will probably come around. (Let's just hope it's before 2048:) (4)You have one incredibly handsome little man in Lil' Chris:-) (I had to say it one more time:)

Our prayers are with you, and our support behind you, Susanna and family

PS You are welcome to do whatever you would like with this 'comment', I know it's long. But if you erase it could you at least refer to it directly in a post so that I at least know that you got it. If you don't mind it being read, I don't mind it being posted. I'm new to the blogging world and don't even have my own blog, but it is very encouraging to find others that are going through some of the same things we are. This might be too much to ask, but if you wanted to copy and paste the comment into one of your actual blogs, I'd really like to know your thoughts, and your many friend's thoughts about what I've shared. Thanks for your time.

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