Two Years Since Tubie Graduation Day!

Two years ago today, Ali had her feeding tube removed and while we hadn’t used it for about 6 months, it was still a huge day! I always had a love-hate relationship with her G-tube.

For me, her feeding tube started out as a symbol of failure, not hers but mine. What kind of mom can’t feed their baby? What kind of mom can’t keep their child from throwing up 7 or 8 times a day? In the early part of Ali’s life, I felt like I admitted defeat over and over again. When we put her “permanent” feeding tube in, it felt like we had truly lost the war. I was tired, I couldn’t do it anymore. I needed that fight to avoid a permanent tube to end. What followed was years of a new battle that I fought with myself. How hard to push, where to get advice from and who to listen to when there were experts telling me that my child may never eat. Did we need to take things slow or push her to eat? What kind of diet would stop the constant vomiting? How could we get her to the point that we didn’t need to feed her 24 hours a day? It was really, really hard. Deep down inside, I knew that she’d never, ever eat uand it hurt. But I was wrong in so many ways.

She did eat eventually and suddenly I had a whole new perspective on her feeding tube. In reality, by making that decision for Ali, Jason and I had made the only choice we could. We didn’t give up, we took a really brave step forward and accepted that Ali needed time. We accepted that she needed nutrition and that we had bigger things to worry about then how we were going to feed her. We gave her the opportunity to grow and thrive. Ali’s feeding tube saved her life many, many times and it allowed us to concentrate on other aspects of her development rather than spending 24 hours a day trying to feed her. It was a gift and I say that because there are countries in the world where children like Ali do not get feeding tubes. Ali would have died without her tube, if not from starvation then from one of the many viruses that she got because she wouldn’t have had the nutrition to struggle through or a way to take the many medications that used to get her through the day.

I’m so thankful for that journey. I will always remember the first time Ali swallowed and the way it felt and I carry that with me because when it seems like the odds are stacked against us and I wonder how we will get through, it’s a reminder that sometimes, even when it seems like there’s no hope, there is.

Now, two years after having her feeding tube removed, Ali is still in feeding therapy. She has jaw issues and we are continuing our feeding journey as we try to teach her to chew. It can be frustrating and we are aware that the odds are stacked against her. I look back at that baby who couldn’t suck on her bottle and who threw up every ounce of food that she got through a tube running up her nose and into her stomach and I know how far we’ve come. Just a little bit further to go. I look forward to the day when I can stop buying a new slap chop every month but in the meantime I’m thankful for a journey that showed me that there are more victories in this life than defeats.

Happy Thanksgiving!

10 Things I’m Thankful For At Thanksgiving……..

I’m thankful little voices saying, “I love you”.

I’m thankful for friends that are still my friends even though I don’t spend a lot of time with them.  I had someone tell me recently that I wasn’t their friend because I never invite them to do things and I thought, “Wow, I wish my life was as easy as yours and as simple as that.”  That to me is such a shallow statement and I am so thankful that I have some amazing friends that even though we don’t talk that much or only see each other a couple times a year, I still know that they’re there and I can’t tell you how much I appreciate that.  I wish I could spend more time with all of you, it’s tough for so many reasons but one day I’ll get there and I am so thankful for the friends that will be waiting.

I’m thankful for teachers (and TAs) that see the potential in Ali.  I’m not naive, I know that on this journey, we will meet people that don’t see potential in her.  I understand that teaching her is a lot of work and that you don’t always see a lot of progress. I also know that teaching her takes extra time that could be spent on other children that may need that time to make gains and that’s why I am so thankful for the people that take the time to teach Ali.  While the goals may be different, Ali wants to learn and learning to read and count are skills that are just as valuable to Ali as to anyone.  Those skills are the difference between being dependent as an adult and having freedoms.  I know that she probably won’t grow up to graduate from the same university as I did but she’s going to do great things because people believe in her.  She needs to grow up knowing that she has potential too.  I am truly thankful for those of you that teach her and that see having that opportunity as a gift because people like you are going to change the course of her life.

I’m thankful for Therapists.  I’ve heard people say things like, “Kids talk when they’re ready.”, “They never go to high school in diapers.” or “Kids always eat when they get hungry.”.  I think Ali would have proved all of these statements very, very wrong had she not had a substantial team of therapists guiding us along.  There have been therapists that have made the choice not to work to with Ali because they either didn’t have the expertise or didn’t think it was worth their time so we are truly thankful for the people that haven’t given up even when faced with some really difficult tasks.  This morning, Ali told me to stay out of her way (rather rudely) while she was walking around the kitchen looking for her lunch stuff for tomorrow – thanks for that guys!!!!

I’m thankful for my family.  Although I wish they were closer so that we could have a big family Thanksgiving, I’m thankful that I know that if we need them, they’ll be here. I’m thankful for the support even from a distance and for the “little voice” in my mom’s head that tells her that we’ll be okay.  I do truly wish they were close enough to babysit but we’ll work on that!

I’m thankful that Madi is Madi.  When a little girl has a sibling with the kind of needs Ali had, it affects them in every way.  While I saw it (I still do), I was powerless to do anything about it.  There wasn’t enough of me to go around.  I tried so hard to be a good parent to both my kids but in the end, I just had to get through it.  But somehow, Madi managed to turn into a smart, kind, compassionate little girl.  She amazes me every day.  We are now at the point where we can give a lot more of ourselves to Madi and I am so glad that we are because every child deserves that.  I will always have regrets when it comes to Madi and how her life was when she was a little girl but hopefully we can make up for it from here on out.  Keep an eye out for Mother/daughter pink highlights on her birthday!

I’m thankful for Ali, the little girl that came into our lives and turned everything into chaos.  I’m thankful for progress and for her amazing sunny personality.  I’m thankful for all the stress, hard work and every appointment because the alternative is much more difficult.  I’m thankful for sentences like, “I have go pee.  I can no wait” and for the opportunity to watch her grow, learn and meet milestones.  I’m thankful for having to hunt for 300ml containers of WHITE milk every week, for the potty seat that I carry around in my purse, for the sharps container the keeps tipping over in the closet and for the spoiled “cow cheeses” and yogurt drinks that I find in the car.  I’m thankful for all the people that she’s brought into our lives and all the lessons she’s taught me.  She has so much to give to the world and I’m thankful that I get a front row seat.

I’m thankful for Jason because although we take totally different approaches to pretty much everything, we are a team and we both want what’s best for our girls.  As different as we are and as different as our lives were before we met, we want the same things for our family (except maybe for the fact that I want a herd of shelties and he hates hair in his food).   He provides balance and without that, I’d be an anxious mess all the time (or rather “more” of an anxious mess).

I’m thankful for Shelties, dog hair in the food and all.  I’m thankful for dogs doing flyball turns off my butt while I’m washing dishes, for constantly having to chase them around to retrieve the “Poly Pockets” from their teeth, for hair balls in the corners and for the occasional time one ends up in the kitchen sink all on his own.  I’m thankful for them because as hectic as life gets, they force me to take time for myself (because if they didn’t get walked or exercised, they’d be nuts), they pick up all the food that falls on the floor and they keep me on my toes like nobody’s business.

Most of all, I’m thankful for today, for a cold snowy day sitting in the kitchen, watching my kids and my dogs play.  Never in the almost 7 years that we’ve been on this journey have I been so aware of what a miracle Ali is.  I don’t know if it was denial or self preservation or if I’ve just forgotten but in the first few years of our journey, aside from being terrified of the cancer risk, I don’t remember having much of a grasp of how fragile she was.  I sit here today on Thanksgiving, looking at my children playing with my dogs in my yard and think of the 6 families just like mine who have lost their children this year, all of them but one younger then Ali.  That’s 6 out of maybe 400 people gone in less than a year.  Looking back, I see what a struggle it often was and I can hardly believe that she’s the little girl that was so close to leaving us the Christmas she was born.  I’m thankful for my life with all it’s up and downs. Happy Thanksgiving to everyone from Jill, Jason, Madi and Ali!


I remember being told when Ali was about 3 months old that she’d always be low functioning and miserable. Today, Ali graduated from Kindergarten and she won a Sunshine award!

Ali, who has been through more this year then a lot of us ever go through won an award for always being positive and cheerful and for helping to enhance school moral and encourage positivity. I have never been prouder of Ali then I’ve been this year. Last summer, Ali went through some really awful testing. It had to do with her hypoglycemia and as her mom, it hurt me to watch. She started daily injections in September and immediately began to experience symptoms of a tethered spinal cord. She went through testing for the cord issue and had a test that in my opinion is probably the most awful medical test she will ever have. She had surgery on her spinal cord, went through a recovery and then needed to get 12 Botox injections in her leg. She’s now in the midst of serial casting. All that in less than a year and on top of her regular echocardiograms, ECGs, ultrasounds, blood work and medical appointments. We’ve also required more of her this year then ever before in both therapy and at school.

She’s had a really busy and difficult year. I wouldn’t blame her if she was miserable and worn down, after all I feel like we’ve all been though a battle this year and I’m ready for all these issues to be resolved. She faces challenges that no one should ever have to face and she’s starting to understand that most kids don’t have to do all the things she does and yet, she won the Sunshine Award! She smiles through everything.  She never gives up.   Even when the tests are scary and she cries and asks us to stop them, she still leaves the room smiling. She is amazing and I can’t tell you how proud I am of her. She has so much strength in that little body and she is so brave.  While she’s dealing with lots of challenges, she is constantly worrying about others and how they’re doing.  She has grown this year into a thoughtful, intelligent and caring little girl.   I am so proud to say that I’m that happy little girl’s mom and I’m proud of the impact she has on the people around her. This kid was never supposed to be happy and today, she got a Sunshine Award!

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.