Feeding Advice?

Yesterday morning I got up bright and early to prepare for a big morning of Ali things!  I got Madi off to school and had Ali dressed, fed and medicated by 8:30 so that I could make a phone call about her new wheelchair before heading out for the morning.  After making my phone call, I checked Ali’s blood sugar, gave her a snack and we headed to a therapy session at the gymnastics club.  From there, we went to the drug store to pick up Ali’s prescriptions and then it was time for another snack.  Ali has hypoglycemia and at the request of her Endocrinologist, she eats a high protein/high fat snack every ninty minutes to keep her sugars in a normal range.  I checked her sugars in the car, put on a band aid and headed into McDonald’s, Greek yogurt in hand to get a juice and a coffee and feed Ali.  Ali loves going to McDonald’s!  She just adores sitting and watching what’s going on around her.  It’s rather distracting!  So, I’m happy to let her sit and look while I shovel the yogurt in to her mouth.  After only an hour and a half, she’s never hungry, despite the state of her blood sugar so she rarely self feeds anymore.  We’re sitting and she’s looking around smiling and I’m drinking coffee and happily shovelling the food into her mouth and life is great.  Then suddenly I have a lady standing next to me telling me that she’s too old for me to feed her and that if I don’t do it, eventually she’ll get hungry and learn to feed herself.  Well, thanks for the advice lady, I never thought of that!  What’s funny, is that I’m sure this lady thought she was probably about 2 when she’s actually 5!  Now in the grand scheme of things, that’s not really that horrible of a thing to say and it actually sounds like a reasonable plan if you’re not Ali’s mom, but what I don’t understand is why people give unsolicited advice to strangers in McDonald’s?  Maybe I’m too sensitive?  Don’t answer that because I know I am.  But I don’t understand how people can look at other parents, who they’ve never met and feel like they need to give unsolicited advice?  Support, kind words, a sympathetic glance, sure!  But I think parenting advice is a little much.   I struggle every day with Ali’s feeding issues.  We struggle with balance.  Allowing her to feel hungry to help with self-feeding versus the need to eat often to avoid low blood sugar.  Hypoglycemia vs excess weight gain that can cause worsening heart issues and the social implications of getting chubby in order to keep her sugars up.  Our feeding team tells us never to push food yet our endocrine team tells us that she has to eat every hour and a half!  It’s very complicated. Maybe I should have asked this helpful lady how exactly one successfully feeds a high fat diet to a child that needs to eat often yet is never hungry and has an affinity for vomiting while keeping them skinny due to heart issues when they don’t actually grow upward much?????  Something tells me, she wouldn’t have had the answer.  No one does.   I have to document blood sugars for endocrine so I am actually held accountable for my actions when it comes to feeding my child.  There are multiple therapists that monitor her progress on self-feeding and chewing, which also in a way holds me accountable.  That’s makes it more stressful.  Now, obviously I can’t expect a stranger in McDonald’s to know all of this which is why I wonder how people feel like they are in the position to give such advice?

I’m not actually that upset by this.  I felt like writing a blog post anyways and I’ve had much more cringe worthy conversations.  It’s always a little tricky when someone asks how old she is (insert awkward pause) or inquires if we think she’ll get hair before she’s two (she’s 5),  I’ve been asked if she changed my stance on prenatal testing (no she didn’t), I’ve been used as an example of why you shouldn’t smoke when you’re pregnant (I’ve never smoked anything) and I’ve had a conversation about how lucky I am that she’ll never become an independent adult (because that’s what we all want for our kids? She’s life limited, one day she will be gone but no, she won’t be independent).  So I’m well versed in awkward conversations which is why I simply thanked the lady for the advice and shovelled another spoonful of food into Ali’s mouth while smiling at her.  Then I went in the car and cried (no biggie – remember I said I’m too sensitive).  It’s all good now.  It’s another reminder to me to try really hard not to judge what I see because I don’t know everyone’s story.  It’s hard sometimes to remember not to judge so a reminder’s always good.

Something Special For Mother’s Day!

Today, is Mother’s Day and although I’m just doing laundry and homework with the kids, I’m having a great day because BOTH of my girls wished me a happy Mother’s Day this morning. This is the first year that Ali has had the words to say, “Happy Mother’s Day” and it’s amazing to hear! I love her voice and the way she pronounces every single word in her special way. I’m so proud of her!

I hope all the wonderful moms out there get a gift as special as hearing Ali say, “Happy Mother’s Day”.

I know a lot of moms of children with special needs. These are some of the strongest women you will ever meet. They spend hours working with their children to try to make their lives the best they can be. They are not only moms but nurses, teachers, medical experts, advocates, therapists and cheerleaders. They put the needs of their children above everything else, often to the detriment of their own personal lives and sadly some friendships and then when their children defy the odds or succeed at something, they refuse to take any credit. Some of these moms stand by their children through countless surgeries, medical procedures and painful therapies and as hard as it is, they wouldn’t want to be anywhere else. Some of these moms do it knowing that time is limited with their child and some do it knowing that their child will never be independent and that they will need to live this life for the rest of their life but either way, they strive to help their child live life to the fullest. They are there every step of the way, not because they have to be but because they want to and they wouldn’t have it any other way. Some of these woman live lives that make mine look so easy and they do it with so much grace and are so thankful for what they have. Some of them are close friends and some are fellow Costello Syndrome moms, there are even a few that I’ve known since before I had kids! So many of them inspire me to a better mom. I know that a lot of them are wishing for something other than a material gift today. They are wishing for first words, first steps, a pain free day for their baby or peaceful outing with their kids. I hope they all get something special, especially the ones that are wishing for their kids to beat cancer or survive until next year on Mother’s Day.

Regardless of whether our kids have special need or are typical, none of us are perfect but there are many ways to be a great mom. It’s not easy but the most important thing is that we make sure that our kids always feel loved. By loved, I don’t mean buying them things or sharing poems on Facebook about how wonderful they are. That’s easy and doesn’t hold much meaning. I think as a mom, it’s my job to stand behind my children through thick and thin. We show our children that we love them by always supporting them and listening to them, always doing everything we can to help and trying our very best not to hurt them. I know it’s not always easy to put someone else ahead of yourself which is why I want to celebrate all the great moms. Sadly, there are children in this world who grow up without ever feeling like their moms really care. Can you imagine what a huge impact this would have on their lives? That’s why I think those of us that try really hard to be great moms and who have kids who always know they’re loved deserve to really be celebrated.

Happy Mother’s Day to all the mom’s in my life especially my mom and my sister. I’m very lucky to have their love and support through everything! There is nothing more important then knowing that your family is always in your corner and luckily for me, I never have any doubts!