Early this morning, Joe and I had to take Gracie to Children’s Hospital for Aspergers testing. As usual, we were running late, too late to even wait in the long car line that wrapped around Starbucks. On our second attempt to get the much needed coffee, at one of those mom&pop coffee stands, we were told “cash only”. We had no cash on us. So off we went on the half hour journey to Tacoma. A journey we were all too familiar with just short of six years ago.March 8,2005 Our oldest daughter,Gracie, was born with gastroschisis. In lamens terms, her intestines were outside of her body. I had found out at 20 weeks that our daughter had this condition. The next few months were spent making preparation after preparation for her birth. I would have to deliver at Tacoma General, a hospital better equipped for such births. We would not be able to hold her, she had to be taken to the NICU as soon as possible. Joe would able to go with her while I stayed behind for the time being. We knew she would not look like “normal” babies, we knew her intestines (gut) would be outside of her body, and thanks to the endless ultrasounds, we knew there was a lot of “gut”. Yet, we were not quite prepared.
(Gracie, hours after birth. Her intestine is in the plastic bag hanging above her body)
Gracie had other plans. She decided she wanted to make her appearance around the 36 week mark, impatient little devil. She also decided she was going to do everything she could to make it known that this birth was going to be done her way, and no one else’s. One night in March, about one month out from her due date, Gracie decided to stop moving. Yeah, she was that stubborn. Joe and I rushed to the hospital fearing the worst. Thankfully, there was still a heartbeat.She had to come out via c-section and she had to come out now. There was not enough time to get us to Tacoma General, I had to deliver her at my local hospital, immediately after delivery she was to be transported to the NICU at Mary Bridge Children’s Hospital. I had told Joe when she leaves, he better leave with her. I did not want her to be without one of us.Joe followed the ambulance to Mary Bridge, while I stayed behind. I was exhausted, I was sad, I was scared and felt hopeless.When Joe came back to me hours later he had the above picture with him. I looked at it, not even sure what direction the picture was suppose to be. Once he told me she was okay, I asked him “what the hell is that?” pointing to her intestines. “That’s her gut” an exhausted Joe explained to me. It seems that with all the preparation I had done, I somehow forgot to think that maybe I should look up to see what a gastro baby looks like at birth. I had no idea. Thankfully, it looked worse than it was. It seems that all that really needs to happen with gastro babies, is gravity. The intestines are hung over the baby and each day the intestines somehow move themselves back in where they belong. Crazy. Once the “gut” is back in, surgery is then performed to close the hole.
(About 17 days after birth, the gut is safley inside her body)
Gracie was in the NICU for a little over a month. That had to be the hardest month of our life. Joe and I never went a day without visiting her, and on some days we would go twice a day. I would sit at home, counting down the hours and minutes till he got off work so we could go see her. The car ride up there was quiet. Never much talking, just wondering how much longer till we were able to bring her home? For one month straight we at dinner at that hospital, taking turns bringing our two older boys with us, shedding lots of tears when we had to leave our baby behind, it was hard, very very hard.
Today, all those memories came back as we once again made that drive. No talking in the car, no talking in the waiting room, but this time we had Gracie with us. A trip that was all too familiar for Joe and I was all so new to Gracie. She took it all in, the Tacoma water front, the broken up roads that they still have not yet fixed, the parking garage that scared her, the elevator up to the second floor, she took it all in, while Joe and I were transported back to a time where we could not see a future, and yet here we are, in the future that we were unable to see.
It looks like this was the last time we will have to make this trip. Gracie does not have Aspergers.
(Gracie waiting for the Doctor)
She will not have to have a cat scan, she will not need anymore blood work, she will need no more testing.
(Ready to leave already)
Instead, what Gracie needs is time. Time to settle in to her own, time to learn things on her own timetable, time to figure out who she wants to be friends with and who she does not.She has a very hard start in life, now we just need to sit back and let her do her thing, her way.
(Joe reading to Gracie in the Dr’s office)
She just needs time. And…we need to be patient with her. She passed all the test, she laughed at the Dr’s jokes (while Joe and I were having a hard enough time understanding her thick Russian accent). She was very sociable, something that Aspergers kids are not.
Gracie has OCD, which is not really a surprise if you know anything at all about me. She likes things done her way, and that’s okay.
She “may” have to be re-evaluated at 7, but for now, she is a happy, smart little girl who has OCD tendencies,
and for Joe and I, we are very thankful.