May 4, 2014
So maybe "Abnormal" isn't the right word, though sometimes it sure feels that way. From the outside Annabel looks fairly typical, and on the rare occasion some are even surprised when they find out she has Down syndrome. Sometimes it's more apparent - such as when she's sleepy or smiles really big and crinkles up her eyes, or when her tongue is sticking out. But sometimes it's less obvious. Her glasses are almost always cause for attention everywhere we go. The feeding tube is another. People often do not understand why Annabel needs a feeding tube, and if you are one of those individuals please allow me to enlighten you.
Annabel was born with a duodenal atresia (you can Google this condition for more information), had surgery at 3 days old and was therefore not able to "eat" (nurse or drink from a bottle) for the first two weeks of her life. Two weeks. TWO WEEKS. She did not do well with bottle feeding after that (forget nursing, it just wasn't going to happen) because of this. The first two weeks are formative with learning to feed. We struggled with bottle feeding around the clock in the NICU until suddenly, after a swallow study, the realized she was aspirating. Bottle feeding was abruptly stopped and all of her nutrition was pumped through her NG (nasogastric) tube. She was NG fed for the first 6 months of her life, until after her heart surgery.
After another swallow study it was determined that she was only experiencing minor aspirations and we were allowed to give her small amounts of baby food and formula. She did really well for about two weeks, and then the novelty of food and formula began to wear off. At the urging of one of her doctors we removed the NG tube and attempted to give her all of her nutrition orally. Six months of age is generally a pivotal point in a baby's development, and they decide they are in charge of whether or not they want or don't want something. So, if we were going to wean her from the NG tube quickly, it was a "now or never" scenario. To say getting food into her was difficult would be a VAST understatement. She would vomit more than a couple of ounces, so we were feeding her approximately 8 meals a day, which is pretty much around the clock. I spent about 12 hours a day trying to get nutrition into her. We tried every bottle and nipple out there, using every technique I could Google. Nothing worked. I spent all day every day in tears, the frustration and guilt mounting. I felt like a failure. What kind of mother cannot feed her child? It's a simple process. Why can't my child do it? Its there some tiny piece of the puzzle I am overlooking? What if I hold the bottle just so? We modified nipples, we angled them in every way possible, put Annabel in every position possible. I rejoiced when I could get 2 ounces into her. At that point she was consuming about 16 ounces at most a day, and would often throw up a bit of that, so she was actually getting less. We would put the NG tube back in on the days when things were really bad, and it was always an enormously stressful event with Annabel screaming and both Rusty and me feeling like we had failed our daughter. I would often always end up in tears. It was very difficult to see my baby girl so unhappy. She would become withdrawn and depressed with the NG tube in place. For the most part, gone were the smiles and contentment. She had tasted freedom without that damn tube, and life with it was uncomfortable and painful. Not only did she have a small garden hose down her tiny nose and throat causing irritation, but it caused respiratory issues and had trouble breathing.
After two months of feeding struggles and weight loss (we were shocked to discover she had actually lost weight despite our best efforts) we were forced to face the reality that something would have to change. She was not going to figure out this eating thing in a timely manner and could not continue on with the NG tube. The breathing issue was the biggie, but the tape was also breaking down the skin on her face and she had begun pulling the tube out, requiring re-assertion several times a day. The gag reflex that comes with having a tube down your throat also prohibited her from being able to orally consume anything. So on December 9, 2013 Annabel underwent surgery to have a G-tube inserted. It was one of the most difficult decisions we have ever had to make for her. This was the first "elective" surgery, and something that we had to request, even though her doctors were pushing for it. I cried a lot up until the day of surgery and constantly questioned our decision, and sending her off with the doctors that day was extremely difficult, but she handled things like a champ (much better than mommy), spent one night in the hospital versus the usual 2-3, and has grown by leaps and bounds since last fall. It was, for Annabel, the best decision we could have made. We still greatly struggle with feeding issues, and Annabel receives feeding therapy. She cannot get the food down due to a fairly severe tongue thrust, which is something we are continually working on overcoming. She wants to experience eating and will put things into her mouth, but hasn't put two and two together that eating = a full belly. For now, eating is play, and it's an excruciatingly slow process.
Yesterday Annabel made her "big debut" in an upcoming music video featuring individuals with special needs. It wasn't always the case, but since participating in our first Buddy Walk last year, which I believe was my "aha moment", I have completely embraced her Down syndrome diagnosis and seek out ways in which she (and I) can participate in activities and events that expose not only us, but the rest of the world (via her pictures and videos) to Down syndrome. I no longer feel the extreme sadness and fear I once felt. I know Annabel has a very bright future ahead of her, and with our amazing support team (family, friends, The Down Syndrome Association), she will be just fine.
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| Waiting At the Studio |
Annabel was first in line, but they were running a bit late so we and another family were waiting in the lounge area. There was a food table, and as I changed Annabel's diaper on the sofa (no changing area in any of the bathrooms) I watched as my friend fed her son, a typical (non Ds) boy who happens to have been born the same week as Annabel, bites of cake and banana. My friend (who is also a nurse) has a 2.5 year old daughter with Down syndrome, and I know she is fully aware of our feeding struggles.
At first I was quite amazed that he was eating like a "big kid" - wow, so young and is eating (and not choking on!) CAKE. But then, as I watched her feed this little 13 month old boy bites of cake and banana, I was suddenly filled with an overwhelming sense of sadness tinged with jealousy. Why can't things ever be easy for Annabel? And the selfish part of me wishes things were easier on me as well. Why do our weeks have to be filled with therapies and struggles? Why can't we just live normally? I was also a little angry at people who have never experienced the struggles of a special needs child. Sitting, crawling, talking, eating.. all things that are taken for granted with a "typical" child are extremely hard-fought for a child with special needs.
Last week we went to Walmart, and as we were checking out, Annabel happily in the seat of the cart playing with a toy dangling from her cart cover, the guy checking us out was staring, yes staring at Annabel. I have grown accustomed to stares and have learned to decipher the different stares. Some are merely curious, some are amused by her jabbering, or are enamored by her cuteness, but sometimes, and it doesn't happen very often, we get the "what is wrong with her?!" stare. I think part of it is the curiosity about her glasses since it's not often you see such a young child with glasses. Obviously I don't actually know what he was thinking, but I made my own assumptions based on my own insecurities and protective instinct. But on this particular day it rubbed me the wrong way and I forced myself to keep my mouth shut and not overreact in a moment of hypersensitivity. The mama bear in me wanted to confront him, but at the same time I realize that Annabel is going to experience stares her entire life, and I need to teach her how to deal with them. Confrontations are not going to be the answer.
Earlier that day I had given Annabel a taste of a food and posted the picture on social media. After we left Walmart I looked at the comments on said photo and found several of them to be fairly critical, or at least that is how I perceived them. The combination of Mr. Walmart and those comments hit me hard and I immediately felt angry, and in my head composed a scathing retort. I even, for just a moment, thought of disabling my account, or at the very least discontinue my posts regarding Annabel. But thinking back on how I want to teach my daughter how to react to criticism, I chose to say little on the subject and examine why I was truly feeling the way I was feeling. As the next few days passed, I thought about why I had felt so angry and hurt by the comments, and upon seeing my friend feed her son that banana it hit me. Those comments had brought up my own feelings of inadequacy as a mother, and I felt like a failure.
Imagine giving birth to a child, having that child taken away from you and not being able to take her home or make any decision regarding her care for over a month. And then you spend every week, often several times a week, at a doctor's office. They are telling you what to feed your child, how much to feed her, and pretty much dictating very aspect of your child's life. You then are admitted to the hospital for two solid months. All control is gone. You are helpless - helpless to doctors you don't fully trust, and again to every aspect of her care. You feel like a prisoner and you are 100% relying on them to make your child well. You don't fully understand the majority of things that are going on, but every day you put one foot in front of the other, so to speak, and try not to think too much. I spent many many nights apart from my child when she was in the NICU and PICU - literally two months all total. Every night I would leave the hospital sobbing. I am, to this day, consumed with guilt over leaving her, but I had no choice. Staying overnight in those areas was not an option. I could not be there all night with only a chair to sit in and be able to care for her the next day, so I had to, for my own self-preservation, go home at night. The last month of her stay in the hospital I was able to be there every night since she was in a regular room, and let's just say that sleeping trying to sleep on a pullout sofa can do some crazy things with your emotional state. But I was there caring for Annabel, and I wouldn't have traded that for anything. Nothing will ever keep me from being with my child again.
Being the parent of a child who is ill or has any sort of condition that's out of the "ordinary", often makes you feel powerless. Everyone has an opinion and doctors are quick to provide you with constant appointments and lists of do's and don'ts. And then there are the therapists with their own agendas and opinions. Every aspect of your life feels controlled. I have finally learned to take advice here and there, but at the end of the day I know my daughter best, and I use what they tell me as a guide and not gospel.
I only want the best for my child. I literally live my entire life for her. I love her more than anyone in the world. As a stay at home mom I am her primary caregiver and am here through the good and bad. Most days are awesome, but there are the difficult days, or at least hours, sprinkled here and there. I often don't share those moments because frankly, I don't want to think about them or put them out there to stumble across again. I want to move past the hard stuff and live for the great happy moments. I am an optimist. So to be criticized for what was to be an innocent photo of my child getting a few licks of a Popsicle was difficult, to say the least.
I am doing the best I can and I know I am a good mom for my daughter. But as with most moms, I always wonder if there is something I missed, something I should be doing that I'm not, something I did to screw her up for life. I question myself. A lot. I Google feeding and PT techniques. A lot. Right now the feeding issue is my biggest source of stress. I so badly want her to "get it". I want her to experience the joy of eating, and I want to do away with the stares of curiosity when we are out and I have to tube-feed her in public. I want to be rid of the questions when people hold her and feel the feeding port on her belly. I feel a lot of guilt over that feeding tube. Why can't I get my child to eat?! I have completely failed my child. As our feeding therapist has assured me many times, it's going to be a process, and it might even be a very long process. Annabel is going to take baby steps to get there and we are to celebrate each and every slight step forward in the process. She has and will continue to do things in "Annabel time". I know this and accept this, but it's still a source of near-constant stress and worry. We will continue to do as directed and give her tastes of everything we are eating or drinking that she might be safely able to consume without choking.
Now that I have evaluated my own feelings, I am no longer hurt or angry with the people who made the comments. I understand why they made them and feel they were innocent, and in no way were intended to hurt my feelings. Oftentimes we speak before we think,and online it is difficult to read "tone", so a seemingly innocent comment may come across in a completely different way than was intended. I realize (and it was also pointed out to me) that in putting myself out there on Facebook, I am inviting comments and criticisms. I completely understand that, but at the same time I want people to understand why certain comments, particularly when it comes to opinions about my child's appearance or developmental issues, might be hurtful. We all have our likes and dislikes, our own values and thought processes, our own personal beliefs about many, many things. It's what makes us unique, and gives us something to talk about (and if you're into it, debate) with others.
Annabel has taught me so much, but the main thing she has taught me is acceptance and kindness. Before having her I feel like I was probably a fairly judgmental person. I had my own way of doing things and I was fairly certain mine was the "right" way. ;-) I'm sure a lot of us feel that way. But now I realize that I completely took a wrong turn on that road! Having Annabel in my life has taught me to love and nurture people, not judge them. None of us can fully appreciate or understand what goes on in someone's life on a daily basis, and we all have our struggles and burdens to bear. At the core, everyone wants to feel loved and accepted and not judged.
My main reason for sharing Annabel, aside from the obvious - she's just so darn CUTE - is to show the world that Down syndrome is nothing to fear, and that our differences are what makes us special. Annabel is more like a typical child than not. Sure, we have had more than our fair share of medical struggles, but we have persevered. Annabel is an amazing little girl who has overcome so much. I know she will continue to beat the odds, and with the continued support of our tribe (that's all of you!) she will grow into the most amazing woman! And if she makes you smile, then we've achieved our goal. I have had numerous people tell me that Annabel has changed their life. I won't divulge details because that's not what this post is about, but some of them have been fairly significant and that makes it all worth it.
My life is not perfect, and I have my daily struggles, but it's MY life, and it's pretty darn amazing. So Mommy Guilt and all, I wouldn't trade it for anything in the world!
Much love to you all! xoxo
