activity day girls

My responsibility at church right now is a co-leader of the "activity day girls" - girls ages 8-11 in the primary program. Twice a month, we get together to work on projects, goals and activities of a wide variety. These girls are hilarious and fun and smart and kind and talented and so full of energy. 

We had a recognition night for them tonight to present them with charms that correspond with various goals they have been working on. The girls pretty much ran the show and did an amazing job - they did all the musical numbers, prayers, and talks (including one girl who forgot she was giving a talk and gave one on the fly!). Then of course we ended the night with some delicious desserts. 

There are nine girls right now and by next November, enough girls are turning 8 that we will nearly double in size. Wish me luck! I love these girls and feel so blessed to spend time with them a few times each month!

how do they do it...updated

I just wanted to post a little update to the series I did a little while ago titled, "How do they DO it?" Kelly was my very first guest poster in the series and she had a lot on her plate! Well, she still has a lot on her plate, but a few things have changed and she posted about it on her blog recently. I thought it was worth an update here for any interested in her story. Enjoy! And congratulations, Kelly!

Lately, (maybe since it is Awareness month and I am talking about Down Syndrome and Rett Syndrome more) I have had quite a few people ask me “How do you do it?”  Which reminded me that back in 2010, I had a friend that was doing a series of blog posts about “How do you do it” – she asked several women in her life to simply complete that sentence. Sounds easy enough right? Here was my response to her a little over three years ago:

{Rett Syndrome} I went through a whirlwind of emotions, never imagining how heart-wrenching it would be to watch our child slowly lose most of the abilities she had learned during her first two years of life. I went through the grieving process over and over. I remember being sad and crying for days following Brooklyn’s diagnosis on May 21, 2005. Also, I was angry. Why was this happening to our sweet little girl? I felt a loss of the dreams I had for Brooklyn since the moment I found out I was pregnant and heard that sweet heartbeat on the ultrasound. Why does she have to suffer? Why can’t my daughter speak, or go for walks, or even talk back to me? I was like a toddler with nothing but “why” questions.

{Down Syndrome} September 12, 2009. Boston entered this crazy world ten weeks early weighing 2 lbs. 3 oz. and fighting for his life. I, again, was asked to be stronger than I ever thought I was capable of being. The first time I held his tiny body in my hands I felt love like I had never felt before….he was a fighter….he was MY fighter. Despite surgery, multiple infections, and other mild complications he was going to be fine! It was not until seven weeks later that there were concerns that something was “just not right.” Genetic testing was completed and Down Syndrome confirmed. Again, my heart was breaking for my child. Why is this happening? Why do MY kids have to struggle in life? He was supposed to be Brooklyn’s protector. What now?

{Divorce} I know the percentage of failed marriages increases within families that have a special needs child. Make that two special needs kiddos and I suppose the number is staggering, but I knew that I would NEVER be one of those statistics! Maybe since my ex also was dealing with his own rare disease it added additional stress as well but the sad truth is, I have now increased the strength of that very statistic I vowed never to become part of. I prefer to not share the gritty details of why it ended. There was unfaithfulness that continued over and over and promises that continued to be broken. In turn, I too was left broken and again asking, “Why?”

When Maren asked the question, “How do you do it?” It made me look at life and the past three years. I have been thinking about this blog post for weeks now and three words continue to come to mind: faith, family, and friends.

{Faith} I have always considered myself to be strong in my faith, but have asked over and over:Why is all of this happening? Why does it have to be me? I would not say that I have ever doubted whether or not God is still there, but I confess that this is the closest I have ever come to wondering. I do believe, though, that without God, this time in my life would have been a much darker place for me. My hope in Him and in His love for me and my kids gets me through.

{Family} I know many people love their family and depend on their support, but I can, without a doubt, say that I would not be the mother I am today without them. My sister Kristin is my best friend. She is my strength when I feel like I can’t be strong anymore. She wipes my tears and holds my hand and even sleeps over and gets up with the kids when all I need is to just sleep through the night. She reminds me that it is ok to cry but helps me remember how to smile too.

My mom and dad moved to town when Brooklyn received her diagnosis and now through the divorce have moved in with me to help financially, emotionally, and physically with the kids. They are a constant support of love and encouragement to me and to Boston and Brooklyn. I am so glad that Grammy and Pappy are able to play a daily part in our lives!

{Friends} I have found that often times my most supportive friends are people that I have never even met! I do not know how moms dealt with special needs (especially rare ones like Rett Syndrome) before the internet! Blogs, facebook, chats, and email have allowed me to connect with other mommies that “get it.” My friends locally love me and want to support and help me and I love them for that! However, they do not deal with Rett Syndrome or Down Syndrome on a daily basis. They do not wonder if their child will ever walk, or talk, or start struggling with seizures. They do not dream of hearing the words “I love you” come from the lips of their children. I do. The mommies I meet online do. Amazing moms who are raising amazing daughters. Daughters that are my inspiration, my motivation, my encouragement to make a difference!————————————————————————————————————————————————————————————————————————————————————

Fast forward three years, as people ask me this question now I think about what has changed in my life. Would I answer this question differently now?

{Faith} I still believe, I still have faith  – I HAVE to, however – I can’t lie – actually attending church almost never happens. It is tough – really tough. BUT, I really NEED to, I need to make it a priority for me – for the kids, absolutely! Prayers are a must around here – to survive. Without God, this crazy life would be MUCH crazier!

{Family} As far as my parents and sister go – nothing has changed here – they are still a DAILY part of our lives. My mom helps out transporting Brookie to and from school everyday and helps me around the house too when the laundry is getting out of control or I haven’t made it to the grocery store :) Dad has become Boston’s “go to” guy when we are running around with appointments for Brookie – they have become the best of buddies! Kristin – well, not only is she still the best aunt in the world, she is also Brooklyn’s third grade teacher this year! Which, ROCKS! Inclusion ROCKS! She also continues to be MY rock – yes – she is my sister but has been my bet friend since birth and continues to be. I could not “do it” – do this life without her.

There has however been an addition to my family since this original post – and that is Jon. The man that God sent straight from heaven just for me and the kiddos! Three years ago as I wrote this I JUST KNEW it would be the kids and I together forever. I will not say alone because with my amazing family alone would never be an option but single - yes. Who in the world would walk into this life voluntarily? Relationships are tough enough but add in two extra special kiddos and I just assumed it would be too much for someone else to see, to love. But that is exactly what happened. If I am being honest here – I think he fell in love with Brooklyn and Boston before he actually fell in love with me (and I am ok with that!) But he did. He entered our world….and stayed. Not only stayed but filled all of our lives with more love and happiness than I ever thought possible! He is my love, my partner in this crazy life – he helps me “do this” life day in and day out…..as a team.

{Friends} My friends of course remain a stabling force in my life. I still believe that my special needs mamma friends “get me” the most. They are the ones I can call.text.facebook chat.or facetime. at all hours of the day or night and they get why tears can come over the strangest of things. Because they live it right along side me – yes they might be living it in another state – (or country even)  they are living it and we are fighting this battle together – for them – I am forever grateful. They absolutely help me “do it” – and encourage me to “do it” better! I do need to comment on a HUGE addition to this category: Brooke - she is Brooklyn’s 1:1 aide this year in school and I really can’t come up with words of thanks great enough for her and the role she plays in Brooklyn life. She is her voice everyday at school. Like I said before – At school, she is Brooklyn’s feet, hands, and voice. She is her communication partner and friend. She believes in Brooklyn – in her intelligence, her ability to make friends and be a good friend and for that, there are not enough words of thanks.

So, back to the original question – “How do you do it?” Honestly “I” don’t. If it were just me there would be no way I could. I would be failing miserably! They say it “takes a village to raise a child” and I could not agree more – thank you to each and everyone of you that are a part of my “village” – I could not do it without you!

short documentary

When I lived in California, I had the opportunity to spend time each week with the youth in my church congregation. Specifically, I taught the 12-13 year old girls. When I first started, one of the girls I taught was the lovely Hannah.

At the risk of feeling outrageously old, Hannah is now a freshman in college and approached me (virtually) a few weeks ago about doing a short documentary on Rett syndrome! Of course we would have loved if she could have flown to Iowa to do it about Leah, but that wasn't in either of our budgets! I got her in contact with a family that lives near where she goes to school and this film, Silent Angel, is the beautiful result.

Thank you to the Heimburger family for opening your home and your lives and sharing a little bit of your and Lucy's day with us. And thank you, Hannah, for choosing to film a short about Rett syndrome and doing such a wonderful job! You've got a great future ahead of you.

Natural History study, Chicago style

We move a lot. It's true. And yet, every time we move, things just seem to fall into place. When we moved to California, we didn't realize we were moving to the perfect place for Leah to be diagnosed and begin her treatment for Rett syndrome. But with Katie's clinic and some fabulous families, that is exactly what happened. 

When we drove 3,000 miles across the country to New Hampshire, we had no idea our new neurologist would have a background dealing with Rett syndrome and would be the perfect fit for figuring out Leah and her seizures. But he did, and he was. 

And then, when we moved halfway back across the country to Iowa, we didn't realize we would again be within easy driving distance of Chicago and one of five locations for the Natural History Study for Rett syndrome we have been participating in since 2010 (two of the others being Boston and Oakland) . Okay, maybe we did know that this time. But it is still uncanny how things work out.

So, this morning, we headed a few hours east to Chicago. After a quick pit stop at IKEA, we found ourselves at Rush University mingling with our new Chicago Rett family. Some we knew already, some we know from connections online and some were brand new to us. But they are all family  nonetheless. 

It was a long day. We were in and out of appointments from noon until 5pm. But it was so great to catch up with friends and doctors. Get our questions answered and get some umph to carry on for the next six months. Kate even participated in a sibling study and got some blood drawn for her big sister. 

After the study, we were able to enjoy some dinner with two other families and I somehow didn't get a picture. That shocks even me!

I have to admit, it is also very humbling to be in a room full of girls and women with Rett syndrome who are at varying abilities. We are very grateful for Leah's health and mobility, her pleasant demeanor and her overall patience with us. She is part of an incredible group of girls that we are more than proud to know. 

 

 Angie, mom to Ellie, who I first met in Boston at my first conference 2.5 years ago.

 The incredible Jennifer, mom to Jilly, who I met in Boston at the conference and got to know in New England.

 The lovely Kate and Dr. Kaufmann from Children's Hospital Boston.

Sweet, sad, Katers. The things you'll do for a sister.

october in an instant

October has always been one of my favorites, and this year was no different. It was stuffed full of what will be good memories for years to come. 

I was a little emotionally exhausted this year for a few different reasons, but the goodness that surrounded me all month long was enough to make up for the low days and buoy me up for more days to come. 

I look at these pictures and am reassured that my life is blessed with beauty, family, friends, laughter, love and more. 

Thank you, October.

a super halloween

This year, we again gave Leah the choice of what she wanted to be for Halloween. After a number of options, she wholeheartedly agreed that a superhero would do the trick. Since Kate isn't old enough to choose, we all donned our spandex and tied on our capes to save the world together. 

Wonder Woman was a fabulous trick or treater. She didn't mind that half the neighborhood had their lights off and didn't participate. The ones who welcomed us were incredibly kind. And the rain was no deterrent. She braved the cold air and wet sidewalks and filled her bag wonderfully full (well, kind of wonderfully full). 

Meanwhile, back home, Super Girl was busy snitching candy from the bucket. 

After we saved the world, we carried on my childhood tradition and sat down to a warm dinner baked in a pumpkin. 

I'd say Leah's choice was super indeed. This is the best picture we got of our littlest super heroes. Mostly because of Kate and her facial antics. It's like she's not even my child!

Happy Halloween!

Purple Piggies

If piggies painted purple could cure Rett syndrome, we would have done it this month. All 651 toes (and one thumb) strong. 

Leah giggled and her grin stretched wide each time I got a text, tag or email. She loved it! Thank you so much to everyone who took the time to spread awareness and share our month with us! It really means the world. 

a kindergarten halloween

I headed to Leah's school this afternoon for their school parade and her classroom party. (Miss Kate was able to take a nap at a fabulous friend's house!)

The kids in her class were so darling all dressed up. And they were also darling with Leah. And not in a Leah-is-a-class-pet kind of way. But rather in a Leah-is-our-real-friend kind of way, which is awesome. (Especially Miss M, who wanted "just one more picture with Leah.")

My camera didn't focus as Leah walked by in the parade, but rest assured she was cute. 

After the parade, the class made ghost pops (and Leah's friend A decided hers were twins, a boy and a girl named Mary and Jerry, of course) and then played "ghost tap" (more commonly  known as Heads Up Seven Up in my generation). 

This is Wonder Woman with her fabulous special ed teacher, who came as Jessie from Toy Story, which just happened to be Leah's second choice costume. Perfect. 

And this is Wonder Woman's afternoon aide, who was simply fantastic with her. 

It was kind of a perfect afternoon, and much needed after the week we've had. It's always so reassuring to see her in school, thriving. Wonderful, in fact.

diagnosis day take 4

Today marks 4 years since we received that dreaded phone call confirming Leah's diagnosis of Rett syndrome. The phone call that changed the entire trajectory of our lives. And while I cannot say I'm glad we got that phone call, I can say I'm glad to see, four years later, where it has led us. The people we have met, the lessons we have learned, the lives Leah has changed for the better.

Life with Rett syndrome is rough. Period. It's rough if you have it, it's rough if you live with someone who has it. But, four years later, I can say I feel much less lonely than I did that Friday afternoon, sobbing all alone on my kitchen floor.

In the last four years, we have amassed an army of people who care. People who have given their time, talents, energy, money, and love for one little girl. Family, friends, acquaintances, teachers, therapists and even strangers. We have been welcomed with open arms to a new family, our Rett syndrome family, who picked up our crumbled pieces and put us back together. And now we are the ones welcoming fragile families to the fold.

Most days, I see people in a very different light than I used to. I'm not afraid of a child who is different. I feel a connection to a grieving mother. I try to give the benefit of the doubt to someone who has wronged me. I have so much gratitude for individuals who have seen a need and stepped in to help. I have been humbled daily by the sacrifices made by others for our family's benefit.

Every year, I promise myself that today will just be another day, but I always end up thinking so much about that particular day and its events, and the few months leading up to it and I seem to grieve all over again.

I know we are blessed to have Leah in our lives, but four years ago we officially lost parts of her and had to bury a lot of dreams.

And this year, for the first time, Leah has shown us her own grief over her diagnosis. She has shown us sadness and anger and even a bit of fear. That could be partly due to Kate and her daily developments and achievements. It could be because Leah is getting older and truly seeing everything other children can do that she can't. I'm not sure. But either way, she feels it, and some days I just don't know what to do about it. 

Leah has taught us more than I could ever have imagined about strength and love, forgiveness and courage, faith and work, joy and sorrow. 

So much joy and sorrow. So much joy that sometimes I can't contain myself and I smile on the outside and in. But so much sorrow that sometimes I find myself unable to even breathe. 

But you always do. You stand back up. You take a breath. You wipe a tear. You give a hug. And you move on. And you do it with your amazing army. (And your amazing miss ribbons.) And then you try and do the same for others who are crumpled on their own kitchen floors, phone in hand, today. Because their lives will change. Drastically. The new path might be rough and rocky and dirty and dark. But you'll see amazing things along the way that you would never have otherwise seen; and in the end, it leads you exactly where you need to go.

Primary Program

Today was the much-anticipated Primary Program in church. I have always dreamed of the day when my children would participate in the program for the entire congregation. I wondered if they would sing their hearts out, wave innocently at me from the stand, say their parts with confidence, etc. 

It has been interesting to say the least to watch Leah be a part of the annual program for the last three years. My heart swells knowing she is able to participate at all. But a little part of me aches knowing she can't do it alone and possibly not in the way she would like. 

I like to think she is singing the songs in her head. I'm certain she loves the music and we listen to the songs a lot, so I'm confident she knows them. 

I also hope we do a good job helping her create her speaking part. Each year, she has been given a prompt she is to finish with her own thoughts (just like all the other children). I do a lot of yes/no questioning to figure out what she wants to say. 

This year, Leah used her switch beautifully to communicate these words about our prophet:

The prophet teaches us...

...to serve others and treat everyone we meet with kindness.

I'm so blessed to have Miss Leah in my life. Knowing how much service and kindness have been shown on our behalf, I can only hope that our family follows the prophet's words and Leah's example in doing the same. 

Here are a few shots of our little Leah on her big day. I had to document since she is growing like a weed and this is the last time she will be wearing my favorite Annie dress, showing off her fabulous knobby knees (something I wish I had!!).