If I had to describe this past school year I would describe it as CHALLENGING. It started off as any other year had … and then craziness ensued. Getting sick is one of the most selfish things I could have ever done to my kids, my family and my friends. It derailed all of us.
Do I really believe it was my fault?
No. Of course not. But I still feel a tremendous sense of guilt especially when it comes to my kids. They needed me and there were days when I could hardly lift my head. My heart broke each time I couldn’t do something for them. I was angry when they had to struggle without me. They had to step it up and do so much on their own. Things that I normally would do for them or with them. They missed out on our talks. Moments that they used to deflate from their day or share their excitements. They handled stress and problems without me. Again. It broke me.
Today my son George graduates from high school. Goodness I love this kid of mine! He is gentle, kind, compassionate and brilliant. And throughout this past school year he grew into so much more. He matured naturally but also because he had to. He didn’t fight it. He never acted out. He wasn’t bitter. He just went with it. He helped so much. He took on so much. And he accomplished so much. As painful (and wonderful) as it is to admit this, my baby boy grew up in what seems like a few short months. He had to.
Today feels surreal. I want to cry because it’s over and cry from a sense of relief. This was a tough school year but George did it. He finished despite the curve balls life threw at us. And he somehow managed to thrive.
If we are lucky, as parents, sometimes we get a glimpse of reassurance that our kids are READY to take on the world. They get it. They can do this. Those moments when we see clearly that they are exactly what God meant them to be in this time and in this place. I gratefully had many of these moments this school year. They came as a result of time and nature but also out of pain and need. I don’t believe anything happens by chance so I cannot look back on this school year bitterly. All the events that unfolded have delivered us to this day. My baby boy’s graduation day. He got here precisely how he needed to and in a way that has left him better and more capable. What an amazing young man he has become. Indeed.
Well, I hope you all have a day where you are proud!!!
I’ve mentioned before that Reese’s biggest delay is in her oral motor development. One significant issue we have is that she doesn’t chew. Despite years of therapy and trying to teach her how nothing has “turned-on” that ability for her. Nothing. And no amounting of testing, evaluations and specialists can tell us why. So I purée, mash and grind all her food. She’s a great eater but she is choking hazard. And that’s just scary. Really, really scary.
As a parent, you do what you have to do. Therapy, puréeing, whatever. If your child has a special need, you just meet it. You change and do what you have to do to help your child thrive. The changes soon become part of your daily activities and a part of your normal routine. But in addition to these adaptions a slow disappearance of hope occurs too. You start to forget what you had originally wanted for your child. You mourn and move on.
Until this morning I wasn’t even aware of the amount of hope I had lost in this area of Reese’s development. We have adapted well to her limits and her nutritional needs are met quiet well if I do say so myself. Let’s be honest, it was no coincidence that I chose to become a certified nutrition and wellness consultant. I’ve always loved nutrition but my Reese was a huge motivator for me to get my certification.
Anyway, I say that I “realized” all this this morning because twice today Reese picked up 1/4 size pieces of Trader Joe’s Os and put them in her mouth. She needed help getting them to her molars to “chew” them but she totally got the concept. WHOA. This is HUGE.
And IT all came flooding back to me. The hope and dreams I have for my little girl.
Perhaps I’m being selfish but I also want those things for me too. Simple things that parents don’t think twice about are things that Reese and I have never experienced together. I have never seen my daughter delight in eating her birthday cake. I have never seen a smile come across her face when she was given her favorite cookie. And I’ve never not worried that she would choke if I wasn’t there to meticulously monitor her food intake. Yes, I selfishly want all that … for her.
Well, I hope you all have a day where you are given a glimmer of hope!!!
I have mentioned before these Reese’s biggest delays are in her oral motor development. It’s common among people with Down Syndrome and speech therapy works wonders for them. Reese still only speaks minimally and when she does speak she is often hard to understand. Her family, teachers and caregivers understand her but most everyone else would have a difficult time. This means I have to trust that the people I leave her with will take the time and make the effort to figure out what she needs when she is distressed. Reese also does not chew. She is a choking hazard. All day, every day. Awake or asleep. If this isn’t enough to keep a mother from ever sleeping soundly at night, I don’t know what is. Again. I must trust the people I leave her with to make sure she is safe. That she is watched around food at all times. And that she isn’t forced to eat something that she can’t. It’s terrifying to think of the consequences. Terrifying. Especially on days when I go to clean out her lunchbox and find a chocolate chip.
A chocolate chip.
To most of us when we see a chocolate chip we think YUM. Or SWEET. Or COOKIE. And I admit, I am one of those people.
But Reese, is not.
To her, an innocent chocolate chip is something that could potentially harm her. It is anxiety provoking. It is not a treat. It is a threat to her well-being.
I don’t normally focus on Reese’s delays. To me she is developing just the way God intended. She is capable. She is smart. She is loving. And so so silly. I think she teaches me more than I teach her. She reminds me to slow down. To stay in the moment. That life is precious. Every. Moment. She is a gift. She is a joy. MY JOY. And I love her fiercely.
Whether you have a typical child or a child with special needs, parenting is not for the faint of heart. There are days when I feel like a warrior for my children. I would walk through fire for them. Literally. Loving them has given me a strength I never knew I had. An invincibility and fearlessness allowing me to protect them against any concern that comes their way. And yet, there are those days when I find myself reduced to tears by a single chocolate chip.
Well, I hope you all have a day where you don’t worry!!!
This morning as I walked Reese into school she was hopping over all the painted lines on the ground. She was carefully timing her steps and was jumping and having a great time. Boy oh boy, that took me back! I did the same thing when I was a kid. Reese also loves to twirl around. I could do that for hours! She and I are so similar when it comes to childlike play. I didn’t notice this as much with my older kids. They played differently. But Reese and my 7-year old self are like reflections in a mirror. This totally warms my heart. She had me smiling ear-to-ear watching her this morning and I said to her cheerfully, “You’re just like mommy!”
And then it happened.
She said … NO. With the expression of a HECK NO.
Oh goodness. This child just tells you how she sees it. She’s very matter-of-fact in her delivery and expresses exactly how she feels. I hate to tell her … but that is also just like her mommy. HA!
Well, I hope you all have a day where you are ALIKE!!!
Having lost my mom over 23 years ago Mother’s Day has always been a bit of a struggle for me. Some years are worse than others. This year I seem to be doing pretty good with all of it. I’ve had a lot to overcome these past 7 months and I guess it just has me feeling straight up appreciative. Although her time here was cut far too short, I am blessed to have had such a wonderful mother. A relationship that has blessed me far beyond our physical time together. I also have beautiful healthy children whom I love immeasurably. I am here. I am healthy and I am able to enjoy this day with them. It is a gift. I feel this in my soul. And I simply couldn’t be more thankful.
Well, I hope you all have a wonderful Mother’s Day!!!
There is something about making my children’s beds (no matter what age they may be) that never gets old for me. Don’t get me wrong, I DO NOT make all of their beds for them every day! NO WAY, NO HOW. But there are moments in life, especially when we are in a period of transition, when making a bed just pulls at my heart strings.
Well, I hope you all have a day where you get tucked in!!!
Yesterday Reese was watching a movie on her iPad while I was making lunch in the kitchen. Reese still struggles with her speech but it’s really starting to improve. She’s combing more words together and her ability to articulate her sounds is becoming stronger. And yesterday was proof! While watching her movie I heard her say, “What in the world?!?!” It was absolutely adorable! She used it appropriately and appeared quite surprised by what she was watching. I loved it! I say “What in the world?!?!” all the time and my little peanut picked up not only HOW but WHEN to say it. This is pretty huge in Reese’s world and I couldn’t be happier! Oh and I’m pretty darn happy that I don’t say a whole lot worse than that when I’m surprised, HA!
Well, I hope you all have a day where you watch what you say!!!