Monday, March 05, 2007

Pondering the Future

It's my curse. I am a planner. My brain is always thinking ahead. I constantly ponder the future. I envy people (like my husband) who are able to live so fully in the moment.

You can see, with my planning problem, how having premature children has really turned my world upside down. And having children with disabilities even more so.

Life is just not as predictable as I want it to be. I experience a lot of anxiety about this. I try to plan, and I want to plan, but I am terrified of the future. I worry so much about all of the "what ifs". What if Eden never walks? What if other children tease her? What if she doesn't feel like her life is worth it? What if I get cancer and die? What if John gets in a car accident on the way home from work? It goes on and on.

Before having the girls, I was oblivious to all of the bad things that could happen to me or my family. I was young, and felt invincible. Maybe because nothing really horribly bad had ever happened to me.

Not that having premature twins with disabilities is so horribly bad. I understand it's a matter of perspective. There are certainly many, many people in the world who may see my life as a complete cake walk. It absolutely is, when you look at how life has turned out for many other people. It could be worse.

That's exactly the problem. I know now, more than ever, that it could be worse.

When the girls were first born, I started to do some research about micropreemies and outcomes, but it was much too difficult to face, so I stopped. I decided early on that I would focus on the positive and hope for the best. I shied away from preemie stories where the outcome was less than perfect. Instead I focused on the few stories I could find where extreme preemies were seemingly beating all the odds. Thinking back now, was this the best approach to take? For me, I think it was the only approach to take, although there have been times that I think I should have prepared myself better for the possible far-less-than-perfect outcomes. But how can you? When you are in the trenches, all the negativity out there could bury you.

I find myself at a place now where I am getting back into the research. Why now? Because I am once again looking toward the future and beginning to think about whether or not we will have more children. I know it's still early, because if (big IF) we do decide to try it again, it won't be for a least another year. But this time my preparations for any future pregnancy would be so extremely different than last time. There are big, heavy questions that I am forced to ask myself that were not even within my realm of thinking before.

What if I get pregnant with twins again? What if they are born before 26 weeks? These are overwhelming, inherently hard questions under any circumstances (although most people never think of them), but made even more difficult by our situation. The girls are only 2 1/2. We've got some major life obstacles to overcome already, and have no idea what other hurdles may be ahead of us. The research shows that we still have the increased risk of significant learning disabilities and mental health issues to look forward to once the girls hit school age.

We also have no idea why H and E were born so early, and no idea what the risks are for me to attempt another pregnancy. These are questions I will explore over the next year. I could make a list of pros and cons, and I bet the cons side would be much longer. But, the pros side would be much heavier. Because in my heart of hearts, I long to have another baby.


E said...

Tobie and I had the same concerns about being pregnant again. We'll breathe a collective sigh once we hit 36 weeks. However, our doctors attributed our early delivery last time because of the triplets. Knowing that, it did make things a little easier this time around since we just have a singleton (who is probably bigger than all 3 combined when born).

I'm more like your husband, live in the moment and Tobie is about planning the "what ifs". Maybe it's a woman thing. :)

jenns family said...

Its nice to know im not alone in all the worries. I was a pretty carefree person till my kids were born. Now i worry like you . What if i get cancer? Who will mother my babies? What if they get cancer? would i survive that. I lost my mom and dad to cancer it scared the heck out of me. I worry about kidnappers car accidents bath accidents chokeing.. you name it i worry.. Must be a protective mother thing lol nice to know i dont overreact alone lol. You are doing an amazing job!!

Jennifer said... are not alone.

I have a firend with CP, and eveyone ADORES her. more so then a "normal" person. I say normal in quotes because nobody is normal in this world. LOL!

Nobody is mean to Rebekah (my friend) at all at my school. and it's funny. people with disabilities tend ot be happier the people without by far! it's because they see the world in a totally different way.

You are doing so well Billie, you are an awesome mom to those two kiddos!

Anonymous said...

I ALWAYS worry about the what-ifs. I too am a planner, and I thought my life would go according to plan. I've learned that good and bad, the things that happen to us and for us shape who we will be.

We also want to have another baby. I fear people will think I am trying to replace Logan. I fear that I will resent the next baby b/c he/she isn't Logan, and I fear I'll lose them just as I did Logan. It is so overwhelming, andI don't know if I can handle any of it. But I trust my heart, and I know one day I'll know when the time is right.

I wish I could tell you not to worry about the waht-ifs, but the truth is I am doing the same thing. I've learned from your blog that you obviously have much love to give, so I hope you will fully explore bringing another child into the world- they'll be so lucky to have you. Best wishes.

Rebecca said...

I am new to your blog. I share a lot of your same fears. We have a 3 1/2 yr old with Rett Syndrome, which is a genetic mutation. We are talking about having another one next year, but are fearful of the possibility of having another girl with Rett Syndrome.

I wanted to share with you about a friend of mine who's daughter has CP. She does not have the hearing issues that your little Eden has, but seems very similar otherwise. She has been walking with a walker idependently since she was 6 yrs old! (she is now 13) She slowly started talking at age 3, and now speaks a mile a minute and is very social!

Your little girls are definetly in my thoughts.

Anonymous said...

I love ya Billie.

Anonymous said...

Whatever decision you and John reach will be the right one. You never know where life will take you, and can only follow your heart. I think in the end if you do that life may not turn out how you planned it, but you won't have any regrets. Luv Ya Liz

Maggie (Sarah's mom) said...


I can definitely relate to the need to plan. That's how I am. I spend way too much time worrying about the what ifs. I think I psycho analyze everything to death.

My advice to you if you think you might want another is to have a TTC visit with your OB and maybe even get a 2nd opinion from another practice. When I got a 2nd opinion, the other OB seriously believes I had an incompetent cervix which caused me to drop and my water to break (I never had a contraction, nor did the monitor pick them up). My OB doesn't share the same opinion (she thinks it was an isolated pPROM incident). Needless to say, I've changed GYNs to one who seems to want to look at every angle.

Good luck!

Kim said...

I say go for it! Your kids are so awesome more would just be better!!! BTW better you than me:)

Anonymous said...

I'm sure this time around you would be monitored much more closely - hopefully that would give you some peace of mind. Just think what great big sisters H & E would make.
As for all the worrying - I think all good moms are like that.
Good Luck,
Kelly in Canada

Stacy said...

Billie -

I always wonder about the "what ifs" - the long term survival rate of a kid with a transplant is 75%. I wonder how Morgan will cope if something would happen to Tanner, how we would cope, would it be easier if there were another sibling...the list is long. We kept saying if we could have ONE, FULL TERM, HEALTHY child - then yes. But, my doctor has told me I would have a strong chance of a second set of twins and they don't know why I went into labor early, either. So, I would be considered high risk and probably on bed rest for at least a good share of my pregnancy.

For that & financial reasons, we recently decided not to have another child. It's sad - and we're slowly coming to grips with our decision. But, secretly, inside, I still wish we could do just one more.

Good luck on your path - I know you'll make the right choice for your family.

Kendra Lynn said...

I totally relate to the anxiety.
I worry far more than I should.
Its hard to stop worrying.
I pray that you and John make the right decision about whether or not to have another baby, and I pray that God will continue to touch your precious girls.
I love ya.


Shannon said...

Billie, you are definitely not alone with the way that you think. I just did a post last night about people who think that having a special needs child is punishment!

Anyhow, I think way too far ahead as well. I think about school, how will his gj tube work, how will people treat him, will he be lonely, will he have friends, will he be happy or depressed...on and on.

Their life is what we make it for them. I have met so many "special" kids who don't even know they are disabled.

You are doing a wonderful job and your girls are beautiful.

The having another baby thing is always stressful. I want another one as well but the same thing goes...what if I have another preemie? But you know something, although they say that we are at higher risk for having another preemie, it doesn't mean that we will. Most go on to have a normal term pregnancy...

Good luck!

Lisa Leonard said...

yea, i can totally relate to you. i found your blog somehow. we've got a son with a disability and another son who is "typical" in his own way. life is so painful and scary, but even more beautiful! thanks for your honesty. its seriously refreshing! if you have time my blog is

Anonymous said...

I think the "what ifs" is a plague we just can't cure. I'll be 58 and I still do the what ifs. But I don't think that's a bad thing. It just helps us be more prepared for whatever. God bless you. Connie W.

Anonymous said...

Hi- When you wrote about reading research, I'm pretty sure you were referring to HH (I'm not going to spell it on purpose). The mental health studies are not reliable- there are flaws up the ying yang over study criteria, and she only posts what suits her agenda. LDs, yes. Not MH. No real proof yet (and keep in mind that the prems with long-term issues are consistenly evaluated, unlike the typical depressed teen under the radar, etc.). -E

Anonymous said...

I have been following your story for a while now and can tell that you are a wonderful mother! Your daughters are adorable-I love Eden's smile :)
I wish you luck in ttc and hope you decide to have another baby. From what I've learned your next pg has a great chance of going to full term. Hopefully carring 2 babies was just too much and the next time you will be blessed w/1 baby.
Keep a positive outlook. Your daughters are loved. We all have our "problems" in life and have to work through them. Beings the girls have CP others will be more sensitive.

Anonymous said...

Hi Billie,
I recently stumbled across your blog. Your girls are very cute!
As I read your disability logistics post I started to think about wheelchair accesibility. I brought it up in conversation with a friend of mine. She went to the University of Illinois and had many friends who were in wheelchairs. She told me that they all had great experiences there and that it is the most wheelchair accessible campus in the US(not sure if thats true but sounds good). Anyways it made me think that as a society we are making strides at becoming more wheelchair accessible. Hopefully it will continue to improve.

23wktwinsmommy said...

Wow you sound like you're in my head. Even though Serena and Edwin are newborns, I've thought about the very same question. Like you, my twins were spontaneous and there is no explanation for their very early birth. I can't believe at 24 I am contemplating all of this, but it's a reality now. What needs will Serena and Edwin have? Will it be unfair to have another baby, taking time, money, and resources from S and E? And what if we had another micropreemie, how could we face months of NIC/u ups and downs with the twins at home? It's hard yo be strong when I think of these things. I just wanted you to know I know where you are coming from.

23wktwinsmommy said...

Wow you sound like you're in my head. Even though Serena and Edwin are newborns, I've thought about the very same question. Like you, my twins were spontaneous and there is no explanation for their very early birth. I can't believe at 24 I am contemplating all of this, but it's a reality now. What needs will Serena and Edwin have? Will it be unfair to have another baby, taking time, money, and resources from S and E? And what if we had another micropreemie, how could we face months of NIC/u ups and downs with the twins at home? It's hard yo be strong when I think of these things. I just wanted you to know I know where you are coming from.

Anonymous said...

I normally don't post to blogs, but had to today. I too had preemie twins, though through miracles of modern science I was able to hold off PTL with 5 weeks of a mag sulfate drip even after rupturing twin A. This meant the difference between 24 week preemies and 29 for me.

I too only read positive stories and have now become one, with almost 5 year old perfect nt twins. But still, my next pregnancy was filled with worry, excessively so.

My singleton was induced at over 40 weeks...had to be evicted, the little stinker. He too is fine, nt.

But you know what--I can't say I enjoyed one second of my pregnancy with him. What happened with my twins was entirely out of my control yet I chose to let it be the black cloud of worry that hung over my pregnancy with him.

Should I be fortunate enough to have another, I plan to try and enjoy every minute. Its the only bit of control I have in that situation.

Anonymous said...

I am also contemplating another child. I want one more than anything and I was already told I would automatically be put on bed rest beginning with the 20th week and I will stay there, hopefully, until the 36th week, since we don't really know why I had my son at 25 weeks. I would love to know how to deal with all of the what ifs and all of the fears with having already had a preemie. Keep us posted if you find any good resources.

Amy said...

I really identify with this. Though B&B SEEM to be fine so far, they are only 21months old. Brayden is slower at everything than Baylee and there isn't a day that goes by that I don't worry there's a cognitive delay that won't show up until later. I would love to have another one, but my husband says he doesn't know if he has it in him to worry throughout another pregnancy. I get that. I'm not sure I could enjoy it, either. Good luck with making a decision you're at peace with.

Kendra's mom said...

My daughter had special needs and passed away at 11 months. We have thought long and hard about having another and have basically decided against it. Due in part to my age (soon to be 39) and also not knowing if the next child would also have a syndrome. There would also be a large age gap between my son of 8 and a new baby. We will just give my son as much in life as we possibly can. Others in my special needs group have also gone through the same dilemma. One lady had a perfectly normal child after her first one had Mitochodrial Disorder and her pregnancy was very tough, mainly psychologically. She now does not regret it for 1 minute. Another lady is now pregnant and plans to terminate if this child has the same syndrome as the first. It is a very difficult decision and unfortunately only you and your husband can make it. Good luck!

On another topic, you asked about wheelchairs recently. A few of the children in our group have had wheelchairs from under a year old. The wheelchairs are made by a lady in South Africa but I am sure there must be similar chairs over there too. Go to to have a look at them. The chairs provide all the support the children need and can also be dismantled to use as car seats.

Anonymous said...

Ok, I am about to comment on a comment...pretty sad, huh? Well, I really like what this person said. here it is...

Should I be fortunate enough to have another, I plan to try and enjoy every minute. Its the only bit of control I have in that situation.

That's cool. O am going to remember that.