Thursday, October 4, 2007

A story from my mom

Get It Down; 31 for 21

My mom said that I have heard this story enough times that I should just write it, so here goes......

On Wednesday, August 30th at around 2pm I called my mom and told her not to panic but that I was in the hospital having contractions, (I was 34 weeks pregnant and the week before had had a "routine" ultrasound and the estimated that the baby was 3lbs,) but not to worry because the OBGYN said "No baby today!" and that they thought I was just dehydrated so they gave me an IV and also that they had checked me and I wasn't dialating.

About an hour later I called her back and said, okay now they are starting some medication to stop the contrations, but still don't worry. Probably about 3 or 4 phone calls and a couple of different medications later, I made my husband call and tell my mom that they were taking me in for a C-section, of course she wanted to talk to me and of course I was sobbing and we were so scared for this tiny premature baby.

Once I was settled in to the recovery room and Chris came back from being in the nursery with Ella I had to call my mom and give her the great news, the baby was 5lbs 10ozs and was only needing the help of an oxygen hood, no tubes!!! She had already changed her ticket so that she would be arriving on Friday morning. (I was planning to have a repeat C-section the 1st week of October and my mom had already bought her ticket so that she could be here to stay with Hunter.) We were all so relieved that Ella was doing so great. Then the attending pediatrician came in. He told us that he was going to test Ella for Trisomy 21, I asked him if that was just because my triple screen had come back at a 1 in 201 and he said he had never seen my records. My heart sank, the OB pitched in with "yeah I saw it too." Um, hello? Saw what?? Anyhow, I of course called my mom sobbing again, told her that they thought my baby had Down syndrome, I'm pretty sure though my memory is slightly foggy but I think she said "NO."

A while later I finally got to go to the nursery to see my baby. I don't know what I expected to see, I had in my mind an image of an adult with Down syndrome. I took one look of my baby, mind you I was laying flat recovering from my C-section and she was still in an oxygen hood so I had a sideways view of the side of her face. I immediatly said "she doesn't have IT." I was so excited, they were wrong!! She was just the tiniest most beautiful baby I had ever seen. My mom always says that she looked exactly like a doll, and she did. Ella did not have the scruntchy features of a newborn, everything was perfectly perportioned down to her little button nose and tiny little pursed lips. As soon as I got back to my room I called mom "she doesn't have it!!!" My mom was so releived, she said if she had it you would know, mom's have instinct.

A couple more hours go by and I went back down to nursery and go to hold her for the first time. Ella yawned and stretched and something in her facial expressions hit me like a ton of bricks, I turned to my husband, "Oh God, she has it." So again I call my mom "she has it," I told her flatly. It was so late at this point and my dear sweet husband was snoring in the recliner next to me, my mom said "I know you are not going to sleep tonight, and I am not going to either. So, call me whenever you want." I know Fairbanks, Alaska is far away, but it has never felt further. I don't know how many times I called my mom that night, a lot, and I think everyother call was "she has it," " no she doesn't have it, she can't" Denial is such a strong emotion. Thursday night was awful for me. My mom was on a plane somewhere and again my sweet husband was snoring. Ella had failed her hearing tests so I spent most of the night ( she was able to spend the night with me in her little basinet) testing her hearing on my own. I would put the speaker box for the TV next to her head and watch for the slightest movement and claim that she could hear, I would clap, whistle anything. Really she didn't respond. Surly if she had Down syndrome I wouldn't be delivered a double whammy and have a deaf child as well. Anyhow, while all this was going on my mom was having an experience of her own......

From the moment I called my mom and told her that they thought Ella had DS she became "almost manic," as she puts it. She began calling everyone she knows. She was frantic and 3900 miles away. She did not sleep or eat. She got on the plane in Fairbanks, Alaska at around 3pm on Thursday. She had a couple of hours layover in Seattle. She said that during this time she was angry with her brother Ken, (My uncle Kenny died in 1992 of AIDS, he and I were very close and my mom has always thought of him watching out for me,) and was thinking "how could you let this happen to her?" She decided that she needed to go get something to eat, I believe she got some soup and found a table to sit at. She sat down and noticed a little girl with blonde pigtails. She sat there staring at her and began crying. She noticed the little girls parents looking at her and knew she had to talk to them. Their little girl, Claudia, has Down syndrome. My mom told them about my sitituation and that the doctors think that Ella has Down syndrome. That couple was so wonderful to my mother. Claudia's mom told my mom that she cried for 90 days straight when she found out her baby had Down syndrome, that she was devistated. But, she gave my mom hope. She told her all about state early childhood intervention programs, and all the therapies. She told her that Claudia had a PDA in her heart (which Ella ended up having) but that it was just something they were watching. Claudia wasn't walking yet, she was 2 years old. Mom said she was just the cutest thing. She had blonde pigtails and was sitting there eating french fries and drinking chocolate milk. They had to run to catch their plane, but Claudia's mom, Karen, gave my mom a hug, gave her their phone number and email addresses, and then Claudia waved goodbye and blew my mom a kiss. My mom said that in that moment she knew that Ella had Down syndrome and that even more importantly she knew it was going to be okay, she was at peace. It was as if because of her anger at my uncle he showed her to Claudia, and showed her it would be okay. It was certainly no coincedence.

Of course it didn't stop days of crying, hysterically at times, from the both of us. My mom told me that she wasn't just worried about Ella she was really worried about me. My mom stayed with me for 7 weeks. If not for her I don't know how we would have made it. Chris was supposed to be deploying that week that Ella was born (though because of all the surprises, he did not end up having to go, but he did have to go back to work.) Hunter was a mess, he was very angry at me for abandoning him and I'm sure that me being a wreck wasn't helping him, he was yelling at me hitting and kicking it was awful. I was so afraid he would never be the same, I know I just kept saying "I want my old life back." and I did so badly. Finally after being home for a few days and getting the official diagnosis, I ended up going in and getting some pretty heavy medication for depression and also sleep medication, I had not slept in 5 days. So, my mom would sit up with Ella from midnight till 6am, put her down and then I would usually get up with her at around 9am. I'm not really sure what would have happened if I had not been able to sleep, and I don't really want to think about it. My mom says that while her and Ella were up partying as we liked to call it she would have Ella on her chest and sing to her and Ella would look up at her and hum. She says that looking up at her like that reminded her so much of me as a baby, even looked like me. My mom is such an important part of Ella's life and we have added up all of the time that she has spent here and us up there and she has actually spent almost 5 months with her, which is pretty incredible.

My wish is that we could meet people facing the news of Down syndrome and be like that family was to my mom. Comforting. When Ella was first diagnosed I could never imagine her doing "normal" baby stuff. I think just being able to see an actual child with DS and seeing how truly remarkable they are would lift people out of the fog they seem to be in. We are so thankful for Karen and her kindness and the information she gave my mom!!!


RK said...

How cool a story! Seems like no coincidence to me that she ran into Claudia's family...God can encourage us in the neatest ways!

I had a couple weeks of inability to cope also, and if I can save anyone even a bit of that, I'd be so happy. I have had a couple of people who have passed on Braska's blog to those who are either dealing with a prenatal diagnosis or have just delivered and received the diagnosis. It's so exciting to hear from them, even though we don't know them personally, and hear how just seeing pictures and reading about "normal" daily life can be. I wish I had been able to get as far as looking online when I was so out of it... I think it would have made a big difference.

I'm sure Ella will be an inspiration to many, and your story will be as well.

mamajuliana said...

I remember the 'fog' days! We knew no one with a child with DS so my hubby and I read everything we could get our hands on! We literally emptied the local library of every book on DS!

That was almost 17 years ago! Sure some days were more normal than others, but it all has been a wonderful adventure! Thank you for letting us read your story!


Michelle said...

What a beautiful story!

And you have a beautiful family :)