Mac ran over to Ellie tonight, his arms open wide for a hug. And when they reached one another the biggest bear hug ensued. Both of them feeling all the feels of what it is to be loved and appreciated. Ellie looked at me and said, "Awww, Mackie Moo just loves me doesn't he???"
It's so crazy how this whole interaction will melt me into a complete puddle of sappy mush, yet make me fight back tears at the same time.
Why all the emotional extremes?
I think it opens old wounds.
She might never...
Be prepared if she doesn't ever...
Socially, it will be hard...
It also thrusts present worry in my face.
Friendship.
Family better love you no matter what, but oh, aren't friendships so hard. I want both my children to have friends...meaningful, genuine, lifetime friends. And because PWS entered our life, friendship is just harder. Plain and simple.
I can remember in the first days after receiving Ellie's diagnosis, David and I had a million thoughts run through our heads. I can remember just crying at the drop of a hat, thinking about the "what ifs." I can also, remember David looking at me, with tears in his eyes, "Do you think she will make friends?" We just held each other. "Yes, I said. I know she will." It is such a raw, sinking feeling when doctors give you a diagnosis. It is like everything is taken away from you, and things you never dreamed you would be worried about, creep to the surface. Will my child make friends? Will she relate to others? Will she thrive socially? Will she be accepted?
I still know the answer is yes, she will make and have friends. But, I have a bit more perspective as Ellie grows older. Is it harder for her to make friends? Yep. Communication has been her first hurdle. Simply being understood and heard is one of the first ways you make friends. One thing I've learned along this journey...parents, teach your kids that we are all unique...differences make us amazing. I know it feels safe to find similarities, but if you open yourself up to differences...you might just change your world for the better. Being kind is definitely the new cool, but being kind AND being a friend is even cooler. Sometimes just being kind isn't enough.
Ellie's other hurdle making friends has been the ability to relate to peers, interact on their level, and just "keep up." Six year olds like to run around, do cartwheels, play tag, and talk about JoJo Siwa once before moving on to the next topic. Ellie would long to talk with you about every detail of JoJo's life. She's not a fan of running, can't do a cartwheel, and might play tag for 5 seconds. We've worked very hard to learn to initiate conversations and play with peers. We do alot of role play at home about how to talk with other peers. What could she say... What could she ask them... Ellie, without a doubt has always had a social aspect about her, and longs to be social with others...it just takes her a little more time to process information, and get it back out to her peers. Each day I see her picking up more things socially. Like everyone though too, she also can reach her max and needs and has to have alone or down time. With each day that passes, I am in the unique position to really see what an awesome personality she has. She has the greatest sense of humor, and is so funny, like seriously funny. My prayer for her continues to be that she would have friends placed in her life that truly embrace and love her for her. I pray that she would be able to garner friends that would be patient with her, look out for and fight for her, and build her up...and that she would do the same for them. I also pray daily that she would be kind to everyone, but especially be kind, and a friend to those who need it most.
Back to the emotional extremes of Mac and Ellie's interactions....
Ultimately, their relationship shows me that love conquers fear, and even when you're told something might he hard...it's all the more sweeter and beautiful when you witness it happen right before your very eyes. The connection Mac and Ellie are forming is the most amazing thing...and it absolutely will aid them both along their friendship journeys.
Friends...Ellie will most definitely make them...and Mac will too. So thankful that they have one another for this crazy and beautiful ride.
Monday, May 21, 2018
Friday, May 18, 2018
I have a new saying this month, "May is Cray." Because it is. Like seriously cray.
I thought I was ready for it and then - boom - it got me. And...it's PWS Awareness month. The month that I intentionally fill your need feed with facts, thoughts and writing about our journey. And life snuck up, and I haven't been posting or writing because of all the cray. But it dawned on me...what a beautiful depiction of life with rare disease, and heck, parenting in general. Things happen, curveballs are thrown...you regroup, revisit, and recharge.
So, I'm recharged and ready to revisit PWS awareness.
Our organization, FPWR, has put together incredible daily facts for families to disseminate. And this one I felt was so important and so timely due to me feeling so crazy this month. I took this survey, so I'm one of the 142. And yes, PWS impacts many, I would argue, every aspect of our life in some way. Sometimes it's subtle...what am I going to pack Ellie for lunch and snack every.single.day? And sometimes it's in your face...as I watch my 6 year old try keep up with her peers running and playing, or as I hear her try to have a conversation with a peer about something, anything...and that peer walks away or looks at her confused because they can't hear her or understand her. So, yes...there is burden.
But there is so much more. I long for and pray for a day that the challenges of PWS be lifted from Ellie and all the other families who have loved ones with PWS. But would I change our life? Absolutely not. Our life is exactly as it was intended and orchestrated to be. It's hard, it's messy, it's complicated, and it's cray. But isn't everyone's to some extent? It's finding the beauty in all that cray that makes it so much more. It's hearing Mac say, "We lud you Eddie" as we pull up to Ellie's school. It's watching David chase the kids to their room, and all I hear is giggles and squeals. It's seeing Ellie walk to the car at pick up and yell, "Bye Sawyer!" And he yell back, "Bye Ellie Belle!" And it's hearing Ellie say, "My friends had doughnuts and juice at our party today, and I had water and a Kind bar" and that's totally ok with her.
So it's so important to recognize that we as caregivers, need support and we're crucial when examining and looking at treatment options and avenues for our kiddos. But it's also so important we make time for self care, and stop and find the beauty in all our cray...especially in the month of May
I thought I was ready for it and then - boom - it got me. And...it's PWS Awareness month. The month that I intentionally fill your need feed with facts, thoughts and writing about our journey. And life snuck up, and I haven't been posting or writing because of all the cray. But it dawned on me...what a beautiful depiction of life with rare disease, and heck, parenting in general. Things happen, curveballs are thrown...you regroup, revisit, and recharge.
So, I'm recharged and ready to revisit PWS awareness.
Our organization, FPWR, has put together incredible daily facts for families to disseminate. And this one I felt was so important and so timely due to me feeling so crazy this month. I took this survey, so I'm one of the 142. And yes, PWS impacts many, I would argue, every aspect of our life in some way. Sometimes it's subtle...what am I going to pack Ellie for lunch and snack every.single.day? And sometimes it's in your face...as I watch my 6 year old try keep up with her peers running and playing, or as I hear her try to have a conversation with a peer about something, anything...and that peer walks away or looks at her confused because they can't hear her or understand her. So, yes...there is burden.
But there is so much more. I long for and pray for a day that the challenges of PWS be lifted from Ellie and all the other families who have loved ones with PWS. But would I change our life? Absolutely not. Our life is exactly as it was intended and orchestrated to be. It's hard, it's messy, it's complicated, and it's cray. But isn't everyone's to some extent? It's finding the beauty in all that cray that makes it so much more. It's hearing Mac say, "We lud you Eddie" as we pull up to Ellie's school. It's watching David chase the kids to their room, and all I hear is giggles and squeals. It's seeing Ellie walk to the car at pick up and yell, "Bye Sawyer!" And he yell back, "Bye Ellie Belle!" And it's hearing Ellie say, "My friends had doughnuts and juice at our party today, and I had water and a Kind bar" and that's totally ok with her.
So it's so important to recognize that we as caregivers, need support and we're crucial when examining and looking at treatment options and avenues for our kiddos. But it's also so important we make time for self care, and stop and find the beauty in all our cray...especially in the month of May
Monday, February 12, 2018
Feed Me
Lately I've been broken.
Like major mad at the world, cry randomly, not taking care of myself, shutting down, mom guilt...broken.
I haven't wanted to talk about it with hardly anyone. And those who I do talk about it with, I'm short and sweet...you know how it goes, "life is crazy, but everything's fine." Well, it's not. Life has been hard lately, and if I'm honest...it's been hard for the last almost two years.
Mac entered this world ticked off and loud. And he cried all.the.time...and still does. He cried when he was hungry. He cried when he needed his diaper changed. He cried when he was just mad. And he cried all the time with gas and because his stomach seemed to hurt him. Who knew babies and kids cried like this?! Oh, that's right...not us.
You see, our first child was the exact opposite. Ellie literally entered the world like a small squeaky kitten. She never.ever.cried.hardly. She never woke to be fed. She never cried when she needed a diaper changed. She never cried just because she was mad. And she never cried because something seemed to hurt.
Two extremely different experiences. Thinking back to before I had Mac, I remember telling myself to be flexible and laid back, and at times now I wonder if I was a little too laid back. I don't think you realize the stress on yourself until you reflect back. I was stressed, and that stress just continued.
Mac and I struggled to nurse. Nursing is hard...enter mom guilt. Eventually I decided I would pump because I knew without a doubt I could do that. So I pumped. Mac started throwing up. And almost two years later still continues to struggle with throwing up. I frantically stopped nursing and went out and got the hypoallergenic formula because I was convinced it was a milk protein allergy. We struggled still, but it got a little better.
We didn't sleep. We don't sleep. He hates sleep. We got reflux medicine. Things got a little better. We still didn't sleep. He hates sleep. Sleep training didn't work. Crying it out didn't work. Eventually we were in a place where almost every time we put him sleep, he got so mad that he he threw up.
He slowly started to stop eating different foods, and became so, so picky. Like crazy picky. He barely wanted to eat. All he wanted to drink was milk...all the time.
We had talked with our doctor about constipation and his weird poop, but he was going everyday, so we put it out of our minds really. Amazing how when you become a parent that so much conversation centers around poop...
Meanwhile, my mind went everywhere. When you have a child with a rare genetic condition, and your eyes are opened to the medical world, your mind can't help but go there. I became nervous, scared, mad. Looking back...mom's intuition is a force to be reckoned with, and as crazy as I felt, I'm glad I continued to wonder.
Enter January this year...
Almost every Friday in January I took Mac to the pediatrician because he was throwing up. Initially, we were all convinced it was the stomach virus (and still very well could've been), but it kept happening...and I knew something wasn't right. We decided to get an abdominal X-ray and a referral to a gastroenterology specialist. The X-ray determined he was extremely constipated...enter even more mom guilt. And upon pushing to see the gastro doctor sooner, severely constipated.
I felt a terrible feeling that I hadn't experienced since Ellie was diagnosed with PWS. How could I have not known this? How could I let him be so miserable for so long? I still get trapped in those thoughts frequently, but have to remind myself that I cannot dwell on the past. The past is gone, and we've figured out some of the problem. We can only move forward.
He's happier now, he's eating more quantity and a little more variety, he's sleeping a little better. But ultimately, he's happier now. But here's what I think I'm struggling with...
Tomorrow we go to have an evaluation for feeding therapy. There, I said it...feeding therapy. Again, therapy for feeding. And while I know we're in the the absolute best hands, and it will do nothing but benefit him...it shatters a piece of me all over again. More therapy, different child. Totally unexpected. This wasn't supposed to happen again. But it is. And just acknowledging it, makes me feel better.
So, tomorrow as we tackle this new feat...I'm choosing to find joy and give God the glory - thanking Him that our sweet boy is feeling so much better and so much happier.
And this picture that once made me again feel sick, nervous and sad (namely because feeding my child was a struggle all over again), now makes me feel optimistic and hopeful.
Like major mad at the world, cry randomly, not taking care of myself, shutting down, mom guilt...broken.
I haven't wanted to talk about it with hardly anyone. And those who I do talk about it with, I'm short and sweet...you know how it goes, "life is crazy, but everything's fine." Well, it's not. Life has been hard lately, and if I'm honest...it's been hard for the last almost two years.
Mac entered this world ticked off and loud. And he cried all.the.time...and still does. He cried when he was hungry. He cried when he needed his diaper changed. He cried when he was just mad. And he cried all the time with gas and because his stomach seemed to hurt him. Who knew babies and kids cried like this?! Oh, that's right...not us.
You see, our first child was the exact opposite. Ellie literally entered the world like a small squeaky kitten. She never.ever.cried.hardly. She never woke to be fed. She never cried when she needed a diaper changed. She never cried just because she was mad. And she never cried because something seemed to hurt.
Two extremely different experiences. Thinking back to before I had Mac, I remember telling myself to be flexible and laid back, and at times now I wonder if I was a little too laid back. I don't think you realize the stress on yourself until you reflect back. I was stressed, and that stress just continued.
Mac and I struggled to nurse. Nursing is hard...enter mom guilt. Eventually I decided I would pump because I knew without a doubt I could do that. So I pumped. Mac started throwing up. And almost two years later still continues to struggle with throwing up. I frantically stopped nursing and went out and got the hypoallergenic formula because I was convinced it was a milk protein allergy. We struggled still, but it got a little better.
We didn't sleep. We don't sleep. He hates sleep. We got reflux medicine. Things got a little better. We still didn't sleep. He hates sleep. Sleep training didn't work. Crying it out didn't work. Eventually we were in a place where almost every time we put him sleep, he got so mad that he he threw up.
He slowly started to stop eating different foods, and became so, so picky. Like crazy picky. He barely wanted to eat. All he wanted to drink was milk...all the time.
We had talked with our doctor about constipation and his weird poop, but he was going everyday, so we put it out of our minds really. Amazing how when you become a parent that so much conversation centers around poop...
Meanwhile, my mind went everywhere. When you have a child with a rare genetic condition, and your eyes are opened to the medical world, your mind can't help but go there. I became nervous, scared, mad. Looking back...mom's intuition is a force to be reckoned with, and as crazy as I felt, I'm glad I continued to wonder.
Enter January this year...
Almost every Friday in January I took Mac to the pediatrician because he was throwing up. Initially, we were all convinced it was the stomach virus (and still very well could've been), but it kept happening...and I knew something wasn't right. We decided to get an abdominal X-ray and a referral to a gastroenterology specialist. The X-ray determined he was extremely constipated...enter even more mom guilt. And upon pushing to see the gastro doctor sooner, severely constipated.
I felt a terrible feeling that I hadn't experienced since Ellie was diagnosed with PWS. How could I have not known this? How could I let him be so miserable for so long? I still get trapped in those thoughts frequently, but have to remind myself that I cannot dwell on the past. The past is gone, and we've figured out some of the problem. We can only move forward.
He's happier now, he's eating more quantity and a little more variety, he's sleeping a little better. But ultimately, he's happier now. But here's what I think I'm struggling with...
Tomorrow we go to have an evaluation for feeding therapy. There, I said it...feeding therapy. Again, therapy for feeding. And while I know we're in the the absolute best hands, and it will do nothing but benefit him...it shatters a piece of me all over again. More therapy, different child. Totally unexpected. This wasn't supposed to happen again. But it is. And just acknowledging it, makes me feel better.
So, tomorrow as we tackle this new feat...I'm choosing to find joy and give God the glory - thanking Him that our sweet boy is feeling so much better and so much happier.
And this picture that once made me again feel sick, nervous and sad (namely because feeding my child was a struggle all over again), now makes me feel optimistic and hopeful.
Sunday, December 31, 2017
A new year
Six.
How can it be? As the clock strikes midnight, New Year's Eve turns into New Year's Day...2018. And our girl turns another year older. She's more than one hand today.
As 2017 comes to a close and 2018 begins, it means so much more to me to reflect back, and reflect ahead. As everyone celebrates at the strike of midnight, we most certainly do too...and they are sweet and exciting celebrations. But, there is also a part of me that loses my breath at midnight every year...
And I know it's because I am transported back to that hospital room, the NICU, and that time in our lives that was filled with so much fear and uncertainty. I knew our lives would change that day 6 years ago when Ellie was born, but I just didn't realize the magnitude. Perspective is what I think I gained 6 years ago. Life is hard. Life is messy. Bad things happen to good people. God didn't and doesn't cause it. He's never left me, even though I've been extremely mad and sad. Spiritually, we go through peaks and valleys. It does take a village. Life doesn't have to be perfect, but it does need to be beautiful. And we must find joy in the journey.
It's so fitting Ellie was born on New Year's Day. The confetti, the noise makers, the dancing, the gathering together, the excitement, the reflection, the love, the singing, the fireworks, and the joy. Everyone celebrates your birthday sweet girl, and that's beyond special...just like you.
And even though my heart hurts a little each New Year's Eve, there is so, so much more JOY. Joy in where we've been, joy in where we are, ans joy in what lies ahead.
Happy 6th Birthday Ellie Belle. We love you so much. Thank you for bringing me perspective and purpose 6 years ago...and so much JOY.
How can it be? As the clock strikes midnight, New Year's Eve turns into New Year's Day...2018. And our girl turns another year older. She's more than one hand today.
As 2017 comes to a close and 2018 begins, it means so much more to me to reflect back, and reflect ahead. As everyone celebrates at the strike of midnight, we most certainly do too...and they are sweet and exciting celebrations. But, there is also a part of me that loses my breath at midnight every year...
And I know it's because I am transported back to that hospital room, the NICU, and that time in our lives that was filled with so much fear and uncertainty. I knew our lives would change that day 6 years ago when Ellie was born, but I just didn't realize the magnitude. Perspective is what I think I gained 6 years ago. Life is hard. Life is messy. Bad things happen to good people. God didn't and doesn't cause it. He's never left me, even though I've been extremely mad and sad. Spiritually, we go through peaks and valleys. It does take a village. Life doesn't have to be perfect, but it does need to be beautiful. And we must find joy in the journey.
It's so fitting Ellie was born on New Year's Day. The confetti, the noise makers, the dancing, the gathering together, the excitement, the reflection, the love, the singing, the fireworks, and the joy. Everyone celebrates your birthday sweet girl, and that's beyond special...just like you.
And even though my heart hurts a little each New Year's Eve, there is so, so much more JOY. Joy in where we've been, joy in where we are, ans joy in what lies ahead.
Happy 6th Birthday Ellie Belle. We love you so much. Thank you for bringing me perspective and purpose 6 years ago...and so much JOY.
Thursday, August 17, 2017
Kindergarten
Somehow we're here...the night before Kindergarten, 5K, "Big Girl school," Elementary School. I'm pretty sure I'll be wide awake tonight, but the utterly amazing thing is, I am at peace. And, if I think back to where we were 5 years ago, I never would have imagined feeling this way. I had fear, worry, and quite frankly didn't know what school would look like for Ellie. But...our girl is on her way to Regular, Typical, Mainstreamed, Least Restrictive Environment, "Whatever You Want to Call it," Kindergarten! And I can't help but reflect how God has just loved her, and loved us through all of this.
The ELC, CDC, and now AMES. These institutions of learning have done more than prepared our girl. They have loved her, loved us, and pushed her appropriately to achieve her absolute very best. To see her growth academically, emotionally and socially has been an absolute joy to witness, and I can't wait to continue it year after year. That's not to say it's been all rainbows, unicorns and butterflies, and I'm not under the illusion that there will not be challenges. There most certainly will be. But, I'm confident that our girl is up for a challenge, has the perseverance to push forward even when it's hard, and has THE absolutely BEST team fighting with and for her.
God has showed little blessings along the way...like having us "run into" her teacher at Target...a beautiful, compassionate, precious soul that we didn't know at all, but now absolutely know without a shadow of doubt was placed in our lives for a perfect reason at the perfect time. God's so good like that. He's placed friends in Ellie's class that I simply can't wait to watch the relationships grow....the friends are sweet, kind, patient, loving, accepting, and protective. He's orchestrated her school nurse to be not only a dear friend, but a previous NICU nurse that Ellie had when she was born. And just today, her 4K teacher (who no doubt has prepared Ellie beautifully, knows her perfectly, and loves her so deeply) from last year called and left the most beautiful, perfect, and inspiring message for me to play for Ellie...and of course, I cried. I could go on and on about the specific, detailed, wonderful ways in which He has and is showing us He's in control and taking care of her.
And that's where the peace comes from. From Him. Will I be worried tomorrow? Probably. Will I cry when we turn to leave her? Maybe. Will I think about how she's doing every second. You bet. Will I cherish this feeling that I have tonight? Absolutely.
So, her backpack is ready, her lunch is packed, her clothes are laid out, we've sprinkled our "1st Day Confetti" under her pillow to have the best.year.ever, and I'm trusting Him as we continue our journey.
The ELC, CDC, and now AMES. These institutions of learning have done more than prepared our girl. They have loved her, loved us, and pushed her appropriately to achieve her absolute very best. To see her growth academically, emotionally and socially has been an absolute joy to witness, and I can't wait to continue it year after year. That's not to say it's been all rainbows, unicorns and butterflies, and I'm not under the illusion that there will not be challenges. There most certainly will be. But, I'm confident that our girl is up for a challenge, has the perseverance to push forward even when it's hard, and has THE absolutely BEST team fighting with and for her.
God has showed little blessings along the way...like having us "run into" her teacher at Target...a beautiful, compassionate, precious soul that we didn't know at all, but now absolutely know without a shadow of doubt was placed in our lives for a perfect reason at the perfect time. God's so good like that. He's placed friends in Ellie's class that I simply can't wait to watch the relationships grow....the friends are sweet, kind, patient, loving, accepting, and protective. He's orchestrated her school nurse to be not only a dear friend, but a previous NICU nurse that Ellie had when she was born. And just today, her 4K teacher (who no doubt has prepared Ellie beautifully, knows her perfectly, and loves her so deeply) from last year called and left the most beautiful, perfect, and inspiring message for me to play for Ellie...and of course, I cried. I could go on and on about the specific, detailed, wonderful ways in which He has and is showing us He's in control and taking care of her.
And that's where the peace comes from. From Him. Will I be worried tomorrow? Probably. Will I cry when we turn to leave her? Maybe. Will I think about how she's doing every second. You bet. Will I cherish this feeling that I have tonight? Absolutely.
So, her backpack is ready, her lunch is packed, her clothes are laid out, we've sprinkled our "1st Day Confetti" under her pillow to have the best.year.ever, and I'm trusting Him as we continue our journey.
Wednesday, July 19, 2017
One tiny penny
Who knew that one tiny penny could bring tears to my eyes...
You see, that one tiny penny was laying on the bottom floor of our pool last week in the evening; and I watched Ellie dive down to get it.
A penny, a small, tiny penny.
Immediately, I scooped her up and hugged her tight and we all cheered and told her how proud if her we were.
After she and Mac were asleep that night, I had a chance to really process it all. The confidence she has gained in the pool has been incredible. And I can see the self-confidence she's gaining written all over her face. To witness it and really see it in her eyes is humbling, year-old, and beautiful. I think back to a year ago, and she absolutely would not put her face under the water and didn't ever want to go swimming. When she did go under water, it was a horrible experience and now I know why. Structurally, she couldn't close off her airway well and water rushed in. And her overall breath support was super duper weak.
Imagine, water rushing in and not being able to maintain holding your breath....it's a disaster for swimming, and I most certainly wouldn't want to do it either.
Fear had set in big time for Ellie. And fear elicits anxiety...something already present with PWS. No way do we want to ramp that up. She spent her time in the pool floating. After VPI surgery (that helped to correct her hypernasal speech and tighten her airway) in February, I was eager and anxious to get her in the pool. Once we had our follow-up in June and heard from the doctor that everything healed nicely, I decided to capitalize on the opportunity. I told her after the appointment that the surgery has helped her with swimming and she would be able to go under water way better now.
That night at the hotel pool, I saw the sparkle of self-confience start. And there's been absolutely no stopping her. Ellie has such a beautiful way of reminding me to slow down, embrace the process, and celebrate the small victories.
First, it was just her mouth and nose in the water, and goggles on her face. Celebration. Then, she dipped down and got her ears wet. Celebration. Next, her whole head went under the water. Celebration. Then, she remained under water longer. Celebration. Next, she got the diving rings off the step. Celebration. Then, rings on the bottom of the pool holding on to the steps. Celebration. Next, she let go of the steps and got the diving trolls on the bottom of the pool. Celebration. Then, she spent literally hours diving for the trolls and gems. And finally, she dove down and brought up that tiny, tiny penny. Huge Celebration. And JUST tonight she jumped in the pool all.by.herself and went under. I just stood in amazement, after we all cheered, yelled and hugged her.
There's several common threads to all of this....perserverance, precision, and bravery. Ellie has from day 1, taught me to trust the journey and let her do things on her time. I think, as parents, we all put such pressure on our children to do this, and then this, and it should be done this way, or by this time, and it better be the best. But, I couldn't be MORE grateful for having that "taken away" in a sense. You see, if I think way back, I didn't know if Ellie would ever swim, much less be diving for pennies or jumping off the side if the pool all by herself. And now, it is THAT much sweeter, and it's helped me to continue to realize that Ellie will do things in her time, and Mac will do things in his. Both are just as equally wonderful, perfect and "right."
I'm so incredibly proud of our brave little girl, and so grateful so had a brother that yells, "Yaaaay!" and claps for her as she jumps in or resurfaces with a penny in hand. And I couldn't help but chuckle as she stood ready to jump in, and looked at me and said, "Mommy, I'm like the Sara Bareilles song, Be Brave!" Yes, my sweet girl...you so are, on so many levels.
A penny, a small, tiny penny.
Immediately, I scooped her up and hugged her tight and we all cheered and told her how proud if her we were.
After she and Mac were asleep that night, I had a chance to really process it all. The confidence she has gained in the pool has been incredible. And I can see the self-confidence she's gaining written all over her face. To witness it and really see it in her eyes is humbling, year-old, and beautiful. I think back to a year ago, and she absolutely would not put her face under the water and didn't ever want to go swimming. When she did go under water, it was a horrible experience and now I know why. Structurally, she couldn't close off her airway well and water rushed in. And her overall breath support was super duper weak.
Imagine, water rushing in and not being able to maintain holding your breath....it's a disaster for swimming, and I most certainly wouldn't want to do it either.
Fear had set in big time for Ellie. And fear elicits anxiety...something already present with PWS. No way do we want to ramp that up. She spent her time in the pool floating. After VPI surgery (that helped to correct her hypernasal speech and tighten her airway) in February, I was eager and anxious to get her in the pool. Once we had our follow-up in June and heard from the doctor that everything healed nicely, I decided to capitalize on the opportunity. I told her after the appointment that the surgery has helped her with swimming and she would be able to go under water way better now.
That night at the hotel pool, I saw the sparkle of self-confience start. And there's been absolutely no stopping her. Ellie has such a beautiful way of reminding me to slow down, embrace the process, and celebrate the small victories.
First, it was just her mouth and nose in the water, and goggles on her face. Celebration. Then, she dipped down and got her ears wet. Celebration. Next, her whole head went under the water. Celebration. Then, she remained under water longer. Celebration. Next, she got the diving rings off the step. Celebration. Then, rings on the bottom of the pool holding on to the steps. Celebration. Next, she let go of the steps and got the diving trolls on the bottom of the pool. Celebration. Then, she spent literally hours diving for the trolls and gems. And finally, she dove down and brought up that tiny, tiny penny. Huge Celebration. And JUST tonight she jumped in the pool all.by.herself and went under. I just stood in amazement, after we all cheered, yelled and hugged her.
There's several common threads to all of this....perserverance, precision, and bravery. Ellie has from day 1, taught me to trust the journey and let her do things on her time. I think, as parents, we all put such pressure on our children to do this, and then this, and it should be done this way, or by this time, and it better be the best. But, I couldn't be MORE grateful for having that "taken away" in a sense. You see, if I think way back, I didn't know if Ellie would ever swim, much less be diving for pennies or jumping off the side if the pool all by herself. And now, it is THAT much sweeter, and it's helped me to continue to realize that Ellie will do things in her time, and Mac will do things in his. Both are just as equally wonderful, perfect and "right."
I'm so incredibly proud of our brave little girl, and so grateful so had a brother that yells, "Yaaaay!" and claps for her as she jumps in or resurfaces with a penny in hand. And I couldn't help but chuckle as she stood ready to jump in, and looked at me and said, "Mommy, I'm like the Sara Bareilles song, Be Brave!" Yes, my sweet girl...you so are, on so many levels.
Tuesday, May 2, 2017
Confidence
Purpose
I've had plenty of passions, but I feel they have come and gone. School was something I enjoyed and was good at, but I never felt like there was one area I completely excelled in. I've always tried my best and given my all for things that have driven me. That's not to say I didn't complain, or wish I didn't have to practice in some way. Just ask my parents about volleyball practice!
But with all these passions and hobbies, I either moved on or there was always something missing.
Then Ellie was born.
I became a mom. I was changed. I was completely and utterly broken. I was at my lowest, but yet proudest point in my life. I was completely out of control. And as crazy as it may sound...I found my purpose, and gained a confidence like I've always longed for. And I have PWS to thank for that, even though I despise this syndrome with every ounce of my being. Weird, isn't it? Something I hate so much...I could also be so grateful for?!
Talking about PWS just comes naturally. It's almost as if, the moment Ellie was born something switched on. Even though I felt utterly out of control, there was an inner strength brewing deep inside me that is hard to explain. At first it felt like my "game face," but as our journey progressed it's grown into such more than that.
Then Mac was born.
Having Ellie in and of itself changed me, rocked my world, and gave me purpose...but after having Mac it's like it happened all over again in a different, but equally as incredible way. I felt completely out of control again, and there were hard, hard days and nights. But the purpose, the confidence and the sheer love is totally there.
Becoming a mom to both of these precious little people is an absolute honor and joy. It's molded me, shaped me, grown me, and stretched me in ways I never knew possible. I'm so thankful God entrusted me to be their mom, and praise Him everyday for the love, joy, and passion that has come because if them.
Purpose
I've had plenty of passions, but I feel they have come and gone. School was something I enjoyed and was good at, but I never felt like there was one area I completely excelled in. I've always tried my best and given my all for things that have driven me. That's not to say I didn't complain, or wish I didn't have to practice in some way. Just ask my parents about volleyball practice!
But with all these passions and hobbies, I either moved on or there was always something missing.
Then Ellie was born.
I became a mom. I was changed. I was completely and utterly broken. I was at my lowest, but yet proudest point in my life. I was completely out of control. And as crazy as it may sound...I found my purpose, and gained a confidence like I've always longed for. And I have PWS to thank for that, even though I despise this syndrome with every ounce of my being. Weird, isn't it? Something I hate so much...I could also be so grateful for?!
Talking about PWS just comes naturally. It's almost as if, the moment Ellie was born something switched on. Even though I felt utterly out of control, there was an inner strength brewing deep inside me that is hard to explain. At first it felt like my "game face," but as our journey progressed it's grown into such more than that.
Then Mac was born.
Having Ellie in and of itself changed me, rocked my world, and gave me purpose...but after having Mac it's like it happened all over again in a different, but equally as incredible way. I felt completely out of control again, and there were hard, hard days and nights. But the purpose, the confidence and the sheer love is totally there.
Becoming a mom to both of these precious little people is an absolute honor and joy. It's molded me, shaped me, grown me, and stretched me in ways I never knew possible. I'm so thankful God entrusted me to be their mom, and praise Him everyday for the love, joy, and passion that has come because if them.
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