It was October and I was 18 weeks pregnant and in for my ultrasound when it was discovered that I was carrying twins. That just might be the greatest shock of my life. I had had several doctor appointments and even one little ultrasound, there had been no other signs that this could be a multiple pregnancy, other than the fact that I was bigger than I thought I should be by that point.
Breaking the news to our friends and families was fun, but very soon the pregnancy became less fun. By Thanksgiving I was not able to chase Aliza around much anymore, and in December I found it nearly impossible to shop for Christmas presents. My stamina for walking around malls was limited. By January all I was doing was working; it took all the energy I could summon to get up, get dressed, go to work, get through the day, and come home. I basically just sat or laid on the couch all the time I was at home. Mark had to do everything around the house. Finally around mid-January, my doctor announced that my blood pressure had risen to such a level that I had better stop working and stay home and rest. It was the best of both worlds, really. She wanted me to rest, but I didn't have to lay down all the time, I could even make quick trips to the grocery store if I needed to. That lasted for two weeks. After that she said I better just lay down all the time. Which sounds like a great idea, but I had a terrible time obeying that order. It was too tempting to get things done around the house without Aliza or Mark there, knowing that after the twins were born, I'd have even less free time for getting housework chores done. I kept thinking, as soon as I get the kitchen cleaned up, I'll lay down. Then I'd lay down and think, well, I might as well put some laundry in, that could be washing while I lay here...
The last week, I didn't get much of anything done because it had become exhausting just to stand upright. I broke out in a sweat and breathed hard, just standing upright for a few minutes. Forget bending over to pick anything up, or climbing stairs. The boys moved almost non-stop. I'd switch what side I was laying on just to try to get them to settle down. I'd get nauseous laying down so much of the time, so I was taking nausea medication almost every night. All my organs felt so crowded together. My lungs were so smashed together, I hadn't been able to take a deep breath in weeks; I'd been basically panting since Christmas. At the end of the day, I couldn't wait to go to bed. The only time I didn't feel completely wrung out was first thing in the morning, so I couldn't wait to get to that point again every night.
Of course, being pregnant with twins had its benefits. It is the only time in my life when I actually needed to eat more than I wanted to. I had gestational diabetes with both pregnancies, but while the first time it meant I couldn't eat as much as I wanted to, or the sweet things I wanted to, with the twin pregnancy, most of the time the gestational diabetes just served to show me that what I'd eaten had kept my blood sugar so low that I needed to eat even more. In the mornings it was so low, I was required to eat something before going to bed at night. It was wonderful for awhile, I just ate almost constantly, all day long.
Zachary Michael and Andrew James were born on Valentine's Day, 2005. They were 5 lbs., 8 oz. and 6 lbs., 15 oz. in weight, and 19 and 20 inches long.
IN THE BEGINNING......
The first few months of the boys' lives were fairly normal, for twins anyway. They fussed and cried and were up most of the night, almost every night, but I figured this was how it was when you had twins, and I also thought, boys are different from girls….. I kept hearing about how boys are tougher when they are babies but easier when they are older, and girls are the opposite - easy babies but tougher as kids! I kept expecting it to get easier though, and kept focusing on a future point where I figured they'd sleep better and their temperaments would improve. Aliza was sleeping through the night by the time she was 2 months old, so I figured since the boys were a month early, I couldn't expect them to even begin to sleep better until they were 3 months of age. 3 months came and went, and they were still up every 2 or 3 hours and not napping well during the day. It seemed like they were constantly overtired and cranky, we just couldn't seem to get caught up. Some parents of multiples had told me that it gets better by 6 months, so that was my next focus point - I lived for August, when they'd be 6 months and would apparently, magically, start to get easier. August was a really hard month, because they didn't get easier - and I was starting to despair. 6 months passed, then 7, 8, and then we were in for our 9 month appointment. Their pediatrician showed some concern that the boys weren't sitting up on their own yet, so she sent us in for some evaluation from therapists and special education teachers through the school district. The boys both tested at several months behind in their development, so we began weekly therapy sessions when they were about 11 months old.
At their 12-month well baby check up they were sitting up well, but not crawling or pulling up at all. Even though by now we were having therapy twice a week, our doctor thought that we should take the boys to be evaluated by a pediatric neurologist. We got in right away (which was amazing, for those of you who know how long you sometimes wait to see a specialist in the Twin Cities), and Dr. J examined the boys, and could not find any physical reasons why they would not be crawling or walking. He did say he noticed they had some sort of facial features similar to kids with some genetic abnormalities, and he looked closely at Mark and Aliza and I, to see if it maybe was just a family facial feature. We thought nothing of this, we thought it was ridiculous actually - they looked like normal boys to us.
So since Dr. J couldn't find any obvious reasons for their delays, he ordered MRIs and genetic testing be done. We took the boys in for MRIs and while they were sedated, the doctors took blood for the genetic testing. We got the results of the MRIs immediately and were relieved to find that they couldn't find anything wrong there, and we didn't worry about the genetic testing very much. We wrote that off, more or less. We figured our families were basically normal, so of course there wasn't anything genetically wrong.
GETTING THE NEWS.....
It turned out Dr. J was very savvy in his evaluation of the boys, because on a Wednesday afternoon he called me at work to give me the results of the genetic testing. I knew they must have found something, or the very highly paid pediatric neurologist wouldn't be calling me himself - we'd either receive a form letter saying the testing results were negative, or one of the nurses would call to tell us.
He told me the boys had something called Fragile X. He said that it was caused by a mutation of the DNA on the X chromosome, a repeating part of the DNA code that hangs from the X, giving it a "fragile" look. It causes the sort of developmental delays the boys were currently displaying, and can cause learning and behavioral problems, OCD, ADHD, and motor skill development problems. He said it's inherited through the mother, and asked if I had any sisters, or if my mother had any sisters. I said no to both, not really grasping why he was asking me about all that.
There were a couple of coworkers at my desk at the time, because we'd been working together on a project, but I'd told them I was expecting a call from the neurologist and that I'd have to take it, if the phone rang. So they were sitting there, talking between themselves. I wrote things down as fast as Dr. J talked. Then while he was telling me we needed to get in to see a genetic counselor to get more information, I did a quick search on Yahoo for "Fragile X". The first thing I saw was the National Fragile X Foundation website, which stated right there on its home page "Fragile X Syndrome is the most common inherited cause of mental retardation." My beautiful babies were going to grow up to be mentally retarded....
I'm sure for self preservation, part of my brain shut down immediately. It's like a wall went up. That was all the information I could take at that moment. More than I could take, actually.
My coworkers had left by now, so while I continued to sort of hear Dr. J talking (but I was no longer really listening to what he was saying), I started to pack up my things and shut down my computer, so that as soon as he let me get off the phone I could leave. I very nearly ran from the building, praying all the while I wouldn't pass anyone in the halls that I knew, because I was starting to hyperventilate with the effort to not scream and burst into tears before I got to the parking lot. I barely made it.
We spent the next few weeks feeling numb and not talking to many people about it. While we slowly processed the news, letting bits of information trickle into our minds, as much as we could emotionally handle at a time, we tried to live our normal lives. It was two months before I could tell my close friends, longer for others.
AFTER THE DIAGNOSIS.....
Since then, I have read and talked to people and gained more knowledge than I ever imagined of genetics and how a person's DNA functions. I have learned that Fragile X is a disease that affects people in a wide variety of ways. In NO way is everyone who is affected by it "mentally retarded". Dr. J did tell me (this part I remember well, because we have hung our hopes on these words) that from what he could see in his evaluation, our boys seem only mildly affected by the condition. Currently they go to special education preschool 5 mornings a week, and have ABA therapy at home in the afternoons. I'm hoping to fit in some outside occupational therapy as well, I'm just not sure where we'd fit it into the schedule.
We have visited a feeding clinic to help them learn to feed themselves and to accept different foods and textures. We saw a sleep clinic doctor to try to get on top of their terrible sleep issues.
They love their therapists, their daycare providers, and all their doctors and caregivers they've met along the way.
Right now it seems like their biggest issues seem to be anxiety and frustration. AJ gets frustrated easily and when he was smaller, he'd lay down on the floor and bang his head. As a young toddler he would bite on his arm so hard he had a constant bruise. Zack is highly anxious, he walks around whining and wringing his hands, like he's got the weight of the world on his shoulders. Zack needs to be carried quite a bit when we're in an unfamiliar place. They are both very clingy when we are out and about. It takes them both quite awhile to adjust to a new environment or new people.
Sleep is of course a huge issue at our house. They were sleeping somewhat well throughout the summer of 2008. For some reason when the weather cooled down, they started getting up more at night again. They take Seroquel and Clonodine, as well as a dosage of Melatonin at night. Every day I try to wear them out so they'll be sacked out for the night! Many days it seems like I'm the only one who gets really worn out!
We have high hopes that they will be able to exist happily in the world as we know it, and basically do what everyone hopes for their child: grow up to be happy, get jobs they like, have good friends, and maybe even have a family one day. But most of all, we just want them to be happy. They certainly seem happy as little boys. They are giggly, joyful little creatures and their laughs are infectious. Everyone who meets them falls in love with them, and their electric little personalities!
