Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Monday, July 16, 2012

Milestones

In the past month or so Eliza and I have hit another few milestones. Six years since her due date, six years since she left the NICU and six years since I realized she would not have your typical childhood. But there are other milestones, not as easily measured. After almost 6 years of feeding therapy, Eliza will have her last feeding therapy visit at the end of August. The decision was a hard one to make, since Eliza has made progress since starting with this therapist three years ago, and frankly this is the only feeding therapist Eliza made real progress with over the years. I've had to come to this decision for two reasons. Eliza's school is moving in the fall and while it is not a far move, given the uncertainty of public transportation in NYC, it makes it physically impossible for me to work, pick her up from after school and get her to feeding therapy at the height of rush hour without the benefit of a teleport machine. There are also financial considerations since her feeding therapy, which is very costly, is not covered by either insurance or CSE (the Committee on Special Education). Since all of Eliza's other therapies (OT, Speech and PT) occur during the school day, I can work full time and pick up Eliza from after school when I get out of work. So starting in September, we'll be working on feeding on our own. Since we have breakfast and dinner together, I can still reinforce what we've both learned in feeding therapy. Eliza's health para at school is also on board with many of the protocols surrounding meal time and has been a great help to Eliza while at school. It is odd though to think that after six years of sitting on uncomfortable plastic chairs waiting for Eliza's various therapies to end, that I'll actually miss those plastic chairs.

I think what bothers me most about having to make this decision is that I would not necessarily have to make this decision if I wasn't a single parent who has to work full time. While I am sure many single mothers go through periods of guilt, for lack of a better word, about whether they have made the right decision to raise a child alone, it is particularly difficult when you have a special needs child and have to work full time. Some single moms I know are fortunate to have great family support, but that's not the case for Eliza and me. Our family support comes from my mom. But while my mom is pretty able bodied, she is 89 and lives 60 miles away. She is a wonderful Nana, but is not able to be a care giver to Eliza for more than an afternoon. And that's what she should be to Eliza, a really awesome Nana.

I think the other milestone that I have reached is an emotional one. I am tired. Very tired. I am tired of having to act like Eliza is just a typical kid with no struggles for the benefit of others because it makes them uncomfortable if I talk about Eliza's issues. I am tired of trying to hide how painful it is to watch Eliza struggle with things that come so easily to typical children just to make everyone else feel better about themselves. I am tired of having people say "but she's just so adorable, she'll be fine" because the people who say this don't know jack about raising a special needs child, they have no crystal ball, have never bothered to spend more than an hour with her and the last time I checked "adorableness" isn't necessarily something that will help you lead a happy and productive life. These people don't see Eliza struggle with reading, math and writing. I am tired of people seeing Eliza eat one-half of one mini pancake and saying "see she does eat, what are you talking about?" Try to have your kid live on that "meal" for a month and give me a call then and let me know how much fun that was. These generally are the same people who will tell me they know what it is like because little Sally or Billy only eats 27 kinds of food. I am tired of people who assume that because Eliza is a wonderful artist that this means that she actually has the fine motor skills to write and then having to explain over and over that these are two entirely different skill sets. I'm tired of the jackasses who think that my kid is lazy because she has weak muscle tone and doesn't have the stamina to keep up with typical kids. I'm tired of people telling me how tall Eliza is and then having to tell them she is 6 and not 3 and getting the response of "Oh." I'm tired of people who think it is OK to chastise my child because she is not sitting quietly and acting like an adult. And I am really, really tired of people telling me I need to take some time for myself. If you want me to do that, then feel free to let me know when you'll come watch Eliza, since I'm pretty sure leaving a 6 year old home alone is a pretty poor idea. The list goes on, but I'll spare you all.

So to celebrate my overall tiredness, I'm paring down. Paring down on contact with the people who cause this tiredness and spending more time with people who bring joy and happiness to Eliza, and to me and to whom we bring joy and happiness. Life is just to short for Eliza and me to spend an inordinate amount of time with people who are never, ever going to "get" us and who are just going to wear us down. We have been blessed with many kind and wonderful friends and family, far and wide, and I think it is time to focus on those relationships.

15 comments:

catchupdaphne.com said...

You have my full endorsement to cut people who don't get it out of your life. Not worth the time anyway. And as for feeding therapy...sigh. I wish I could help. Wish I had answers...

Barb said...

Awesome! Every time I feel a little tired and overwhelmed by my own life I am grateful for your blog and your inspiration. Not sure what to say other than I wish I lived closer and I wish you had more support and I'm glad you're paring down. No advice or suggestions from here. Just hugs... even if that does sound cheesy. Good luck with the transitions this fall.

BusyLizzyMom said...

Wishing I could give you you a hug in person and get to meet you and Eliza, I think our girls have a lot in common. I understand your struggles and have utmost respect and admiration for you doing this all alone it is emotionally and physically draining.
If you ever need someone to talk to I am only a phone call away.

Anne, Eliza Grace's mom said...

Thanks for the kind comments. It is really and truly heart warming to know that I've met so many decent and caring people through this journey with Eliza.

Bridie Sellers said...

No answers or advice...just hugs. I would totally hang out with Eliza if we were closer. If you ever want a relaxing vacation in Iowa, let me know :)

Amy, John, Sam, and Frank said...

I love this post! I do because I feel the same way about a lot of things. Last week I was really sad about things, my Sam had had a major temper tantrum at the pool. I knew people were watching and most of the time I don't care but I worried. Not about them but about Sam. What does the future hold for him? How will he be able to process things. I am so tired of thinking about that stupid window of opportunity, of worrying that I am not doing enough. The kind of guilt that only parents of a special needs kiddos has. I feel for you about this, Anne. I would gladly volunteer to take Eliza to feeding therapy if I lived there. I know saying that doesn't help you but it is true. I wish there was more I could do. However, I am here virtually at least :) Hugs!

Anne, Eliza Grace's mom said...

Amy, I think you are right about always wondering about missing that window or that one magic therapy. I often wonder when I think, OK we've gotten as much out of this therapy as we can, and then spend so much time second guessing that decision. I'm lucky to have people in my life that I can vent to, discuss options with, even if they haven't BTDT, but who are voices of reason, but even then when you make that decision about what to do for your child, or when to cut back on something, there is always this little person on your shoulder saying "are your sure?" Oy. It is so comforting to have friends in the preemie world and single mom world who I can talk to about these things.

Robin Elizabeth said...

Great post. Those are the feelings I have about E but can't put into words like you did. As Barb said, awesome. I hope some day we can do the same with behavior therapy.

E would love to spend time with Eliza if she would be ok with you leaving. That's a standing invitation.

Holly and Stephen said...

I just recently started reading your blog and what you said is exactly how I feel. I gave birth to my son Ross at 22 weeks and 6 days and he is 6 as well. I am not a single parent, but I do have 3 more after Ross and just recently reduced our OT and PT visits because it is a lot having to take along a 4, 2, and 1 year old to each visit. I know you are in New York and I am in California, but I was wondering if maybe you could give me some suggestions as to where to search for a feeding clinic. Ross has always had feeding issues and have not been able to find a place to help us in our town. (Bakersfield)

Anne, Eliza Grace's mom said...

Hi Holly,

My geography may be a bit impaired on California, but I have heard people speak of a feeding clinic in Los Altos and another place which I think may be near San Francisco called Clinic 4 Kidz. The feeding therapy methods that have worked best with Eliza are those used by Kay Toomey from Colorado. It is called the SOS feeding method. It is a bit longer process than some other methods, but the goal is to make eating a pleasant experience and to slowly introduce the child to different foods, textures, etc. if you google it and Dr.. Tooomey's. name, maybe there is an SLP in your area?

All the best,

Holly and Stephen said...

Thank you very much for the info.

Single Dad said...

You are great that you raised Eliza by yourself but it feels lonely being alone taking care of her. You must find a good guy that accepts you both!!!Hope I'm close to you so that if you need someone to talk we can talk personally.

Glendale Child Care said...

Thank you for sharing your post. I wish you had the assistance you need. Hopefully a good change will happen. Positive and good vibes your way.

TylerandBrianne said...
This comment has been removed by the author.
TylerandBrianne said...

It is so darn good to see someone be honest about what it is truelly like. Dang just because my kid looks like she eats doesn't mean I am exaggerating or not telling the truth. Their eyes glaze over when I try to explain that Bailey doesn't know how to chew and swallow. I just want to say that I hate the saying "take lemons and make lemonade." Dang it sometimes the stupid lemons are just rotten!