Hi Miggy, thank you for having us. My name is Christina Wooley, my husband is Derald and our daughter is Alicen Jane. She is 9 years old now. Alicen was born 4 months early and weighed a whopping 1 pound and 13 ounces when she was born. She stayed in the NICU for 111 days. She has since been diagnosed with Cerebral Palsy, Epilepsy, Plagiocephaly, Bronchial Pulmonary Dysplasia, Chronic Pneumonia, Chronic Bronchitis, Chronic Asthma, Legally blind, tube fed, tests C-Diff Positive, Bowel Resection due to Necrotizing Enterocolitis while in the NICU, Retinopathy of Prematurity, the back third of her brain did not develop, and she is wheel chair dependent, and has several break through seizures during the day.
Miggy: Can you take me back to the day you knew Alicen would have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Christina: I had 2 miscarriages before I had Alicen so I was considered high risk, but other than gestational diabetes there was no indications that I would go into preterm labor or that she would have special needs. I still at that point did not know what was going on, I mean I was only 5 months pregnant, you are not supposed to have your baby 4 months early. Alicen was in the NICU for 111 days. I felt so much guilt; I still do to this day. I can remember apologizing to her while she was in the incubator in the NICU. I still apologize to her. When she was about 2 months old , the doctor in NICU told me she would have CP, he said that she would never be able to pick up a pencil or an M&M off the floor. Although I still have the guilty feelings all I need to do is look into her beautiful blue eyes and somehow forget that guilt because she is so happy. I don’t even remember feeling the “over-whelmed” feeling of her disabilities, it was what it was I guess.
Miggy: I've come to understand that the terms "special needs" encompasses a wide range of ideas--some children have challenges mentally, some physically and still others are medically complex children--it seems that Alicen has challenges in all 3 areas. That is a lot for anyone to handle! Explain how Alicen's needs affect your day-to-day life?
Christina: Alicen has an Air Way clearance vest that she uses three times a day to keep the secretions loose in her lungs so that she can cough it up. This keeps us home a lot. And her feeding pump is hooked up and started at about 5:00 P.M. and runs till about 6 in the morning, this also keeps us home a lot or we have to be home early. My husband and I have no help/respite, so we have not been out on a “date” in probably 5 or 6 years. Please don’t think I am complaining though, because if we go she goes too. It is hard to find time to give her a bath, as soon as she gets home from school, she lays down for a hour or so, then physiotherapy, then feeding. We can take these machines with us but it is a lot of work, what if we forgot the bags for her feeding or the extension she would not be able to eat. My husband can do the chest physiotherapy with his hands, but it is obviously better with the machine.
Miggy: In your introductory email, after a long list of Alicen's diagnosis' you also said, "most importantly, she's perfect." I so get that. Could you explain that seemingly contradictory feeling to my readers?
Christina: Because Alicen is our only child. I had no idea what to expect so the only thing I know is her. By saying she is perfect, I guess I mean that even though she can’t see you she gives you the biggest huge smile when you walk into the room. When she happens to cry, which is not very often, All I have to do is sing Jesus Loves You to her and she immediately stops crying and will smile at you. The Young and the Restless makes her laugh. The Wheel of Fortune makes her laugh, oh and don’t choke around her because she is sure to laugh at you. Her extremely sunny disposition and her ability to laugh at anything is what I think makes her prefect. She is absolutely perfect just the way she is, I would not in a million years change her.
Miggy: What are the biggest worries you face for Alicen?
Christina: I worry so much about her future, who will take care of her if my husband or I can’t for whatever reason. Each and every cough or gurgle, we re wondering if she will end up in the PICU for yet another lengthy hospital stay. Then of course there is the financial side that all parents deal with, but it seems that for disabled kiddos, it is so much more expensive. Alicen needed a new bath tub chair, and it cost us about 500.00 just so we could safely give a bath.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Christina: I am always telling her “for not being able to do much, you sure get yourself in a lot of jams.” A couple of years ago she managed to get herself caught under the sofa. She has managed to pull Christmas presents on top of her and she has got her toe caught in the faucet in the bathtub. Once at Wal-Mart she kicked off one of her shoes, we were running all over the store looking for the missing shoe, finally found it on top of a T.V. display. If she isn’t home to have her chest physiotherapy my husband will thump her manually, I'm sure people wonder what I mean when I ask him if he is going to thump her. Because of her C-Diff her diapers smell terrible if there is a flare up, I am always smelling her, I asked her pediatrician to smell her diaper, and the next time he peaked around the door for fear I would have him smell her diaper again. Not too funny for some people but hilarious to us. For her Ballet recital I put her dress on her backwards but didn’t notice it until after the recital when I saw a ribbon hanging out of her back side, thank goodness for the wheel chair harness that hid that fact.
Miggy: How can people best approach or respond to Alicen? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Christina: Just like every other SNSL mommas, I just wish people would come up to her and talk to her, she can’t talk back but she will sure let you know that she knows you are talking to her. She just loves to be included, loves to be talked to. As for her outward appearance, she looks like an “average” 9 year old little girl, but her fancy wheel chair really sticks out. And people staring, I realize that she is “different than their normal” but she is our normal, if people would take a little time and talk to her it would make a huge difference.
Miggy: What is the biggest lesson you’ve learned since becoming Alicen's mom?
Christina: I can’t really put my finger on just one lesson, there have been so many throughout this wonderful journey. God gave me this sweet child for a reason. I have learned patience. When her seizures (infantile spasms) started she cried absolutely non-stop. Organization, all the paperwork involved is amazing. I think the biggest lesson really, and I am sure every SNSL mother can relate, is the ability to love someone so much that you never even thought it was possible
Thanks so much Christina for sharing your precious Alicen with us today! What a sweetheart! I love so much of what you had to say. I loved hearing about Alicen's radiant personality and how she gets herself in a lot of jams regardless of her limitations! Ha! I'm also glad you've talked about some of the realities, like the financial strains. I know that can be a very difficult reality for many special needs families out there. Thanks again Christina and please give your Alicen squeezes from me.
As always if you or someone you know would like to participate in the special needs spotlight, please email me or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!