Before my little Monkey, I don't believe that I was aware of this condition. Shame on me.
Without the threat of being considered certifiably insane, I knew that there was something - "not right". I felt it in every part of me. Julien knew it too. He constantly asked me throughout my pregnancy, "Mom, what if something is wrong with the baby?". Not only was Julien afraid of something happening to me (because at the age of eight he knew that women could die during childbirth), but he was worried sick about his little hatchling.
If we knew, then why couldn't anyone acknowledge it?
I don't know if it was because I was eight years older or if it was the emotional strain, but this C-Section was much more difficult to recover from. After a C-Section, you have to remain in bed for a full twelve hours (for those of you who don't know that). It is twelve hours of misery. I was so swollen and puffy and in so much more pain than with Julien. When my twelve hours were up - 6:00 p.m., I was buzzing the nurse, asking her to come and take all the mess out of me and help me up. She did, God love her. She sure did, without an ounce of sweetness. I got up and immediately wanted to go for a walk. Chris and I got Addie and went for a walk around the hallway passing room after room decorated with big pink or blue ribbons. It felt good to be out of Room 321 and to do something somewhat normal.
That night, Chris had the pleasure of "sleeping" on a pullout couch that really was more accommodating to someone under five feet tall. The couch was positioned just in a way so that we were looking at one another. Throughout the whole night, it was the same thing over and over. I would close my eyes to rest and Chris would drift off to sleep for a minute. I would open my eyes because I couldn't rest and he would wake. He would ask me in the same quiet voice, "Are you okay?" "Do you need something?" and then we would just lay there looking at each other, not knowing what to say. We knew we would be fine and we knew Addie was a gift, but we were still searching for the missing pieces.
As a second time Mom, I knew that I would send Addie to the nursery later on in the night so that I could try to rest for a few minutes in between being poked and prodded. I don't think I ever slept though. After all, it was New Years Eve and we were downtown. Apparently, noise ordinances are not enforced on New Years Eve, because fireworks continued on into the early hours of New Years Day.
Addie wasn't in the nursery long before I heard the sound of the nurse touching the door handle to open the door, so I sat up in bed. Before the nurse even had Addie through the door, I asked if she was okay. She gave me a quiet reply of, "yes" and I took Addie from her. If felt so good to hold Addie close to me and to kiss every part of her little face. How could this precious gift be the cause of so much confusion?
What was so impossible for us to understand is how everyone could just go about their business like nothing was "wrong".
When I first saw my OB after the surgery, she came in and stood up against the wall far away from me. The least she could have done was sit on my bed, take my hand, give me a hug, something...anything. She asked what I knew and told me that she had heard of the condition, but thought it might be something that could be corrected with surgery. She also told me that as soon as she left the O.R., she went straight up to her office and pulled my chart. She wanted to see if there was anything that she had missed. I didn't talk to her about Addie again until my post natal check-up.
Indeed, there was something that was missed. Between the ultrasound tech, the radiologist (if there even was one) and my OB, nobody bothered to READ the differential on the ultrasound. It was clearly there. I know this because after Addie's birth, a family favor was called in for a radiologist to review my ultrasound and confirmed what I already knew. Someone should have caught the differential and didn't.
God has HIS plan and HIS plan was for me not to know in advance. I get that and I accept it. I don't accept an OB/GYN's office being so busy that they don't give you five minutes for an OB exam, much less read the ultrasound that they ordered. That was one of three reasons why I now have a new doctor at a different hospital.
There was not a single nurse during my hospital stay that ever acknowledged that I was holding a beautiful, God sent, special needs baby in my arms. Not one. No one asked me if I needed anything, no one offered to help me gather information and no one said the words - special needs.
I never understood.
The lactation consultant was a pesky little thing. Addie did a phenomenal job of catching on to the whole, "I know how to eat thing" (she's my daughter, what can I say?). She nursed like a champ. The lactation consultant came by the first time and asked if I had questions, problems with latching on, etc. I assured her that I didn't have any problems and really wanted her to scat. She did, but was adamant about checking back with me, giving me her number just in case I did have problems and even called to make sure. For all things good in this world! Just say it, say that you are concerned because I have a special needs baby. Somebody, please acknowledge it!
The day that we were to leave, my aunt called and told me to request a neuro consult for Addie before we left. I called the nurse and asked her to contact the neurologist on call. She wanted to know...why? Are you kidding me...? I had to call the nurse several times that day and eventually just called the neurologist office myself until I finally talked to the receptionist. Why was it so difficult for someone to help me?
While waiting on the neurologist, the nurse came in to go over our discharge information. Part of her duties was to talk about basic care-giving, even to second time parents. By this time, I was getting really irritated. Are you seriously going to make me sit while you go over a manual regarding proper diapering, feeding and bathing and yet not bother to acknowledge that I am holding a special needs baby? I finally just told her to give me the paper to sign and be done with it.
I don't want to recap the visit with the neurologist. He was a man that lacked any type of compassion and had I not been full of surging hormones that made me want to cry, I would have told him how horrible he was. What kind of physician are you if you don't have compassion? I never understood it and I still don't. My only guess, he shut down his emotions years earlier to protect himself. When that happens to a physician, they need to spend their time lecturing or in a lab, because patient "care" should be no longer.
The last nurse that we saw was a bit older. She had older children of her own and actually talked to us a little. While the nurse and Chris gathered our things to leave, I excused myself to the restroom and had my very first breakdown. I cried harder than I ever had before...quietly, because I didn't want them to know. It hurt my incision, my heart and the very depths of my soul.
When I came out of the restroom, I asked the nurse to give Addie a small bottle just to make sure that she wasn't hungry since my milk supply wasn't in yet. The nurse responded by telling me that she would be happy to. That I wouldn't believe the number of mothers who allow their infants to go hungry while waiting on their milk to come in. I told her that I didn't want my baby to be uncomfortable, I wanted her to be okay. It was those words that made me excuse myself again. This time when I came out of the restroom, I couldn't stop the tears. They just kept silently falling down my face. I sat down in the wheelchair and took Addie so the nurse could take us to the front of the hospital for Chris to pick us up. Chris was a few feet ahead of us and as we got to the front door, the nurse told me that although she shouldn't, she was going to take me to our car. Chris put Addie inside, I got in and then they finished loading up the car. The nurse leaned in and gave me a hug and wished me the best and then she was gone. She never said anything about my baby. She never acknowledged that I was sitting next to my special needs baby.
I still couldn't stop the tears as we started home. Our homecoming for our beautiful baby girl. I called my mom to tell her that we were on the way. I said something to my mother that I wish I could take back because I didn't understand what I was saying at the time. When my mother asked what the doctor had said, the only thing I could tell her was, "she's not okay and never will be" and my mother responded by saying, "I know baby". I asked her to talk to Julien for me before we got home, but she didn't know what to say.
Can you imagine that conversation?
When we got home, Julien was on cloud nine. The first thing he wanted to do was to show me Addie's door to her bedroom. He had made her a little homemade sign to welcome her home. That was all my baby got for her homecoming. In a way, I feel we let her down. How could I not have done more to let her know how happy we were to be bringing her home?
That first night at home, we were a little lost. It didn't take much talking to decide that we would all sleep in the living room together. Chris and Julien camped on the floor. Addie started off in her playpen and I was miserably reclined on the couch. That night was hard. None of us slept. Julien kept wanting to make sure that we were okay. We were, because we really would be.
The sun continued to rise and the next morning:
Julien was still out for Christmas break. We were running late to our 8:15 appointment at Greenvale and I was a mess. I had just sent the email to my friend at work. The email to pass along to let everyone know. We, at first, decided we wouldn't talk to anyone right away. I knew the sooner we asked for prayers, the sooner the healing could begin. On the way to drop Julien off at daycare, I was still trying to tidy myself and put my earrings on. My wedding rings still didn't fit (and neither did my shoes), I was still swollen like a whale.
Right as we were approaching the daycare, a song came on the radio. It was "Addie's Song". The song that was on the DVD that was played at my baby shower. It was "My Wish". How appropriate. I went from trying to put that earring on, to crying and managed to drop my earring down between the seats. We never found my silver hoop earring and I can no longer listen to that song. It is just too difficult.
We sold the car that we had when we brought Addie home from the hospital. The day we signed the papers, Chris and I both searched for that earring. It didn't matter because I had long since replaced them, but we just wanted to see if we could find them. We don't know why. We also sold the house that we were living in when Addie came home, for her homecoming.
Those are memories that are better left to fade.
So, there we were arriving at Greenvale the morning after we were released from the hospital. I was so swollen, wearing my maternity jeans and sweater that had seen better days. I didn't have on my wedding rings, no earrings and my makeup had washed away with my tears. I can't imagine how I looked.
That was the morning that those words were said to us. The morning that someone acknowledged that in my arms was a special needs baby. All along, I didn't realize those words were coming because I still didn't have a clear understanding of Addie's diagnosis. When those words came out of Dr. Dudgeon's mouth, I think the Earth stood still...for just a moment.
So, there it all began. We were given a very poor prognosis for Addie. Me, being the incredibly stubborn person that I am, refused to accept that. I wasn't in denial, I just refused to accept a prognosis out of some textbook.
I have a special needs baby.
I can say those words without any grief and amazingly enough, the Earth continues to turn just ever so perfectly.
April 3, 2009