Dear lady who sits in front of me at church.....
You don't know me, and I don't really know you. But you have had a profound impact on me. Bear with me as I weave through this post - it's something that's been on my mind for over two years...and I hope in the end you understand.
I remember one of the first times we sat in the cry room for Mass... it's always an interesting experience watching mothers trying to entertain their toddlers, let their older babies get out their noises and restlessness, and babies eating or being rocked to sleep....week to week it is different. Some Sundays it's loud and busy... some Sundays it is quiet and calm. But, such are kids - and how wonderful they are at Mass learning and praying with their parents. I first noticed your beautiful family because you started to be the "constant"... whether hectic or peaceful, you were always there. Every Sunday. In the front row. Two boys, two girls, mom and dad. The kids always sweet and you and your husband showing such a good example of why we were there - paying attention, teaching, helping, and praying. You may be thinking..."ok,what's the big deal?" I will tell you.
One Sunday, we were sitting in our usual spot, and you were in yours... and something happened. I saw one of your sons started to have a hard time. He became uncomfortable, started to move around, became physically resistant, and ultimately, resulted in a major outburst in which your husband took him out the back door to the hallways. Having grown up around special needs children due to my mom's job, it was not lost on me he was struggling that day with whatever his challenges were, and it didn't phase me as "unusual" by any means. But then I noticed the stares of some of the parents - probably not malicious by any means, but the curiosity focused on your family certainly not helpful in that situation. Their discomfort and awkwardness at wondering "what" was going on was obvious. Looking back ahead of my seat, I noticed the tears in your eyes. I saw your other children lean in and comfort you and although it was a really tough moment, I saw you re-focus in prayer and willingly take the hugs from your other children. I remember feeling so many feelings, but, the one that struck me most was admiration. I watched the whole thing unfold, and both you and your husband showed such resolve. Strength. And Love. I admired your compassion for your son, and your children's compassion for you. I admired your husband's strength as he tried to calm him. I admired your son for pushing forth when he was obviously having a challenging day. There were many moments that morning I wanted to tell you "You're doing a great job..."... or just reach out and offer some sort of magical words of wisdom and or gesture of compassion to let you know I cared. But I didn't. You may be thinking - why is this important?
As I said, I had grown up around all different children - as a matter of fact I would even go and give music demonstrations or presentations to some of my mother's students (who had diverse diagnoses) with no qualms whatsoever. It was such a joy to be around the children she worked with and I never gave a second thought to speaking to or smiling at a special needs child or their parents. But that morning at Mass I was weakened. We had just recently had our 19 week ultrasound and our daughter was given a very uncertain, and therefore according to the doctors, "doom and gloom" prenatal diagnosis of a congenital brain condition. We had come off a week of negative appointments and a million "she will never do ______" and "you have four older kids.. this will be too hard on them..." among several other comments on what we "should" do "about her"........ I remember feeling confused and sad, and most of all scared and uncertain. Not in our resolve to carry her to term and deal with whatever her needs would be, but just about things in general and all the changes that were about to happen to our family. There was a certain malaise or black cloud that had taken over the pregnancy. Then we went to Mass that day. I realized your son hadn't been dealt the easiest hand in life but then it made sense to me. Seeing him have a rough time that morning, but then seeing subsequent Sundays where he would thrive and joyfully draw on his drawing pad, seeing your tears, but then seeing how much grace you and your husband had made me feel strong for the first time since our ultrasound. I remember thinking "This family is amazing. We are going to be fine. We can get through any challenge with our daughter..." And that was that. You gave me my voice back.
Now anyone who knows me knows I certainly have a voice. But, no matter how strong someone is, unexpected events in life can certainly throw even the strongest person for a loop. And it did that for me in the beginning. But you taught me how to get my strength back and how to fight for my daughter. I don't know if we have even said two words to each other in these years, but, your actions and outward showing of love, vulnerability, and strength all wrapped up into one inspired me. You inspired me to be the best parent I can to our special needs child. You inspired me to help guide my older children through our new "normal." You inspired me to not be afraid of the challenges and not worry what others may think. You inspired me to know when the bad moments happen to just say "tomorrow is a new day." Most importantly, you inspired me to never again stay silent when another special needs parent may just need a smile, or a positive comment, or a simple gesture of kindness....especially in those moments that present the most challenges.
So thank you. Thank you for being there each week, good or bad, and thank you for the example you and your beautiful family put forth. You truly are a shining example for those of us just entering this journey and have touched lives more than you know.
Our little one is now 2 1/2 years old - many challenges for sure, but many many bright successes. Many struggles for her to do what her sisters do with no effort, but many moments of joy when she does accomplish a new skill or milestone. Many awkward moments of our own when something is bothering her and we just can't figure it out why she's screaming, but many hours of sweet snuggles trying to comfort her and show her our love. Dear lady who sits in front of me at Mass, I want to tell you what I didn't have the courage to do that day - you are just that. Dear. Simply dear. And don't ever forget it.
Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.
Face of hope

Courtesy: TIffany Kay Photography
Tuesday, March 18, 2014
Monday, March 3, 2014
AFO time
Meagan's PT has been waiting on fitting Meagan for any sort of braces. Mostly because she wasn't sure Meagan would accept them to help her since Megs absolutely despises any sort of equipment on her body. Typically any equipment or devices in the past made her freak out and it evolved into such an emotional break down, we would never get to the therapeutic purpose of the equipment or device anyway. Lately though, with Meagan now sitting on her own, her PT really wants to work on getting Meagan some weight on her feet. Since Meagan can scooch on her bottom, her arms are finally gaining some strength from all the pushing, but her legs, especially her lower legs, are still quite weak. Her feet have also not grown in over a year. The PT wants Meagan to start having more assisted time on her feet so we can stimulate some growth for her feet to support her body and also to stimulate her leg muscles to get stronger.
Meagan used to hate any pressure on her feet, but lately, she does tolerate the PT or myself holding her upright with her feet touching the floor. She won't hold much weight but she will allow her feet to touch the floor and lift them up to "tap, tap, tap" the floor with her toes or bottom of her foot which is a huge improvement. Meagan's PT thought now would be the perfect time to fit her for some braces since she seems to be tolerating some of this and is hopeful we can get her into the braces without much fight so she gets used to them and sees how they can help her.
Originally the PT was thinking Meagan could use some SMOs (read about them here) but it is apparent now Meagan needs a lot more support. So the PT asked Meagan to be fitted for AFOs (you can read about those here), or Ankle Foot Orthotics. It is a brace that will go from under her foot up to her knee, and will be solid, holding her lower leg in position and also offereing support for working on standing/weight bearing. Typically, special shoes are also purchased with the AFO so the child can fit their braced foot into the shoe easily, but in Meagan's case, her AFO will have tread directly on the bottom of it. In essence, it will be her "shoe." The PT thinks this is the best for her since her lower legs are so tiny so they aren't trying to hold the weight of a shoe on top of the weight of the brace.
The casting for her AFOs was this morning. In typical Meagan fashion, she screamed as soon as we walked into the room - she has had so much done she cries or screams at any doctor office, including mine or her sisters. We had a great guy working with us who talked to Meagan the whole time, made funny noises, and asked her questions to distract her from the casting. She did "ok" through the casting, and surprisingly, through them cutting the casts off - the time she screamed the most was actually when they had to massage her foot and lower leg to set the cast in a certain position - something we are working on with her sensory-wise. Once the casting was over, they showed us her cute little legs - I didn't realize how tiny they really were!
It should be about 4 weeks for insurance to respond, let the Orthotics office know what we owe and for them to make her AFOs. Once we get them we will go back and be instructed on how to put her legs in them each day and what exercises we will do with her to help boost her weight bearing and learning to stand. As a plus, the AFOs come in very cute designs - they showed many of them to Meagan but she seemed to respond the most to one called "Sweetheart"... which is kind of funny because we call her that a lot.
Quite a busy morning, but excited for this next step for Megs! Now we just have to count down the 4 weeks until she is officially into her new Sweetheart AFOs and hopefully from there we will see a great improvement in her efforts at assisted standing. In other news, Maura found a way to entertain herself during the casting.... this is only one screenshot off my phone but I'm pretty sure there are about 100 "selfies" ...... Oh Maura!
Meagan used to hate any pressure on her feet, but lately, she does tolerate the PT or myself holding her upright with her feet touching the floor. She won't hold much weight but she will allow her feet to touch the floor and lift them up to "tap, tap, tap" the floor with her toes or bottom of her foot which is a huge improvement. Meagan's PT thought now would be the perfect time to fit her for some braces since she seems to be tolerating some of this and is hopeful we can get her into the braces without much fight so she gets used to them and sees how they can help her.
Meagan's legs collapse inward if we try to help her stand
Originally the PT was thinking Meagan could use some SMOs (read about them here) but it is apparent now Meagan needs a lot more support. So the PT asked Meagan to be fitted for AFOs (you can read about those here), or Ankle Foot Orthotics. It is a brace that will go from under her foot up to her knee, and will be solid, holding her lower leg in position and also offereing support for working on standing/weight bearing. Typically, special shoes are also purchased with the AFO so the child can fit their braced foot into the shoe easily, but in Meagan's case, her AFO will have tread directly on the bottom of it. In essence, it will be her "shoe." The PT thinks this is the best for her since her lower legs are so tiny so they aren't trying to hold the weight of a shoe on top of the weight of the brace.
Patiently waiting to go to a casting room
The casting for her AFOs was this morning. In typical Meagan fashion, she screamed as soon as we walked into the room - she has had so much done she cries or screams at any doctor office, including mine or her sisters. We had a great guy working with us who talked to Meagan the whole time, made funny noises, and asked her questions to distract her from the casting. She did "ok" through the casting, and surprisingly, through them cutting the casts off - the time she screamed the most was actually when they had to massage her foot and lower leg to set the cast in a certain position - something we are working on with her sensory-wise. Once the casting was over, they showed us her cute little legs - I didn't realize how tiny they really were!
Putting on the casting stockings and setting the center guide
Putting on the plaster
All done!
It should be about 4 weeks for insurance to respond, let the Orthotics office know what we owe and for them to make her AFOs. Once we get them we will go back and be instructed on how to put her legs in them each day and what exercises we will do with her to help boost her weight bearing and learning to stand. As a plus, the AFOs come in very cute designs - they showed many of them to Meagan but she seemed to respond the most to one called "Sweetheart"... which is kind of funny because we call her that a lot.
Meagan's AFO pattern
Quite a busy morning, but excited for this next step for Megs! Now we just have to count down the 4 weeks until she is officially into her new Sweetheart AFOs and hopefully from there we will see a great improvement in her efforts at assisted standing. In other news, Maura found a way to entertain herself during the casting.... this is only one screenshot off my phone but I'm pretty sure there are about 100 "selfies" ...... Oh Maura!
Wednesday, February 12, 2014
Videoapalooza
Just because sometimes when you are iced and snowed in from a major winter storm, compiling some Meagan videos are the perfect remedy :) Hope you enjoy seeing what she's up to these days.....
Intrigued by the popping noises Reilly can make....
Watching herself and figuring out the concept of seeing herself in the camera.....
....still being silly in the camera.....
Meagan loves having playful time with Reilly.....
Copying faces with Anna....
And just enjoying quiet time with Kaitlin.
She is even taking an interest in her meds... everytime I give her meds, I push them down with about an ounce of formula. Sometimes Meagan even says "down down down" as it travels down the tube....
We are also starting to see "toddler" behavior from her.... she loves to demand Daddy's attention....
..and starting to meddle in her sisters' projects... :)
Saturday, February 8, 2014
Nature of the Beast
Well ironically, we did end up at CHOA today (Children's Hospital of Atlanta). But not for Meagan. For Reilly. She had been complaining of some "minor" pain since Wednesday, but told me it was no big deal.... until I picked her up yesterday from school and noticed her limping. I asked her if it hurt and she said "well, a little"... but I could tell it was more. When we got home, I made her sit down and I started to put slight pressure on the part of her leg that hurt... when I got to a certain point, she screamed and winced ... I got concerned because while there are muscles and tendons in that area, it was also right along a small bone line.
So off to CHOA we went this morning - having been a competitive Irish Dancer myself and having had several stress fractures and a broken foot twice, I know it can happen. As soon as she was examined by the doctor, she felt it was an injury along her fibula bone. She got Reilly back for an x-ray very quickly. As Reilly was waiting for the X-ray tech to set things up, she asked me, "Mom, is this the kind of stuff Meagan always has to do?" I said "Yes, Meagan has had a lot of x-rays and scans." Reilly then said "Well, I'm going to be brave for her."
My gut feeling was confirmed - stress fracture of her fibula... splinted and on crutches for a week and then supposed to see a sports medicine doctor to get it looked at. They will tell her when she is allowed to weight bear again, and how long until she can get back to her full training. The doctor said it was good we came in and caught it early - with a lot of rest and strengthening it will hopefully heal on its own. And Reilly also learned a good lesson - tell me right away when something starts hurting so we can help it immediately! :)
Meanwhile her sisters had dance class today so Reilly stayed home with Daddy and the little ones to rest while I took the other two to class. On the way home, they asked if we could stop and get a treat for Reilly since she got hurt. I thought it was very sweet, so they picked out some coloring things and a movie for tonight and gave it to her when we got home. Our neighbors also were so sweet and dropped by with get well soon notes.
Reilly was so happy to have the surprises - and even with two competitions coming up soon she will have to miss, she is taking the "high road." She is of course frustrated and disappointed. Dance is pretty much her life - it is her passion and she practices everyday and goes to class several times a week. So I feel for her. But she is being so positive. She has told me several times today Meagan is her strength to get better. Meagan loves watching Reilly practice... and instead of being down about it, Reilly turned on the music, and reached over to make Meagan's feet helping her "dance" her steps. Meagan loved it.
Reilly has already decided that at the next competitions she wants to go cheer on her sisters and her fellow dance friends. She even wants to attend all her dance classes and sit there, take notes, and practice "in her head" or "with her hands" as her friends continue to train. She said "We are a team mom! I have to be there to cheer them on - I am just so happy for them." She absolutely loves her dance buds and I am so proud of her that she wants to still go and support them. She knows after talking to me about my experiences, Irish Dancing is really tough on the legs and feet - but it's just the nature of the beast that sometime, it's bound to get you down for a bit. She will bounce back before she knows it and learn a lot from this little "break" (no pun intended). I'm proud of her accomplishments of course, but, after this little incident, I'm even more proud of her attitude and how she has handled an unexpected setback. That's something no competition could ever prove :)
So off to CHOA we went this morning - having been a competitive Irish Dancer myself and having had several stress fractures and a broken foot twice, I know it can happen. As soon as she was examined by the doctor, she felt it was an injury along her fibula bone. She got Reilly back for an x-ray very quickly. As Reilly was waiting for the X-ray tech to set things up, she asked me, "Mom, is this the kind of stuff Meagan always has to do?" I said "Yes, Meagan has had a lot of x-rays and scans." Reilly then said "Well, I'm going to be brave for her."
My gut feeling was confirmed - stress fracture of her fibula... splinted and on crutches for a week and then supposed to see a sports medicine doctor to get it looked at. They will tell her when she is allowed to weight bear again, and how long until she can get back to her full training. The doctor said it was good we came in and caught it early - with a lot of rest and strengthening it will hopefully heal on its own. And Reilly also learned a good lesson - tell me right away when something starts hurting so we can help it immediately! :)
Disappointed
Meanwhile her sisters had dance class today so Reilly stayed home with Daddy and the little ones to rest while I took the other two to class. On the way home, they asked if we could stop and get a treat for Reilly since she got hurt. I thought it was very sweet, so they picked out some coloring things and a movie for tonight and gave it to her when we got home. Our neighbors also were so sweet and dropped by with get well soon notes.
Reilly was so happy to have the surprises - and even with two competitions coming up soon she will have to miss, she is taking the "high road." She is of course frustrated and disappointed. Dance is pretty much her life - it is her passion and she practices everyday and goes to class several times a week. So I feel for her. But she is being so positive. She has told me several times today Meagan is her strength to get better. Meagan loves watching Reilly practice... and instead of being down about it, Reilly turned on the music, and reached over to make Meagan's feet helping her "dance" her steps. Meagan loved it.
Reilly has already decided that at the next competitions she wants to go cheer on her sisters and her fellow dance friends. She even wants to attend all her dance classes and sit there, take notes, and practice "in her head" or "with her hands" as her friends continue to train. She said "We are a team mom! I have to be there to cheer them on - I am just so happy for them." She absolutely loves her dance buds and I am so proud of her that she wants to still go and support them. She knows after talking to me about my experiences, Irish Dancing is really tough on the legs and feet - but it's just the nature of the beast that sometime, it's bound to get you down for a bit. She will bounce back before she knows it and learn a lot from this little "break" (no pun intended). I'm proud of her accomplishments of course, but, after this little incident, I'm even more proud of her attitude and how she has handled an unexpected setback. That's something no competition could ever prove :)
Love Reilly so much - she truly is a gem! Feel better soon Reilly! :)
Friday, February 7, 2014
Laying the Thatch
When we had the snow/ice storm hit the area a few weeks back, a lot of us witnessed the good coming out of people. We saw strangers helping one another, and many shining examples of the love humanity really has within. One experience from that day has stuck with me in particular, and made such an impact on me, I felt it was time to write.
It was probably the 7th or 8th hour of our drive home on that icy day. I had all the girls in the car after getting them from my friend's house, and we were on the last leg of our trip home. Although finally only a few miles from home, this proved to be the worst part of our drive. Everything was iced over, many abandoned, broken down, or stuck cars were blocking the road along the way making it almost like a pinball machine to maneuver forward. We were heading up the last big hill of the main road, inching along when we suddenly came to a stop. About three cars ahead was a large sedan - obviously rear wheel drive - that kept spinning out and drifting sideways each time it tried to make it up this last hill. The two cars in front of me had stopped, and their drivers got out to go help push this car up the hill. However, even with their efforts, the car was hopeless - still spinning and at best was fishtailing in place. It would have been easy to give up, as it was seemingly impossible this car was going to be able to make the trek - even after the help of a few good Samaritans... but what happened next is what really struck me and has stayed with me as a life lesson.
Just when bystanders would assume the two guys would give up, two more guys in cars ahead of the stuck vehicle stopped and came backwards to assist. One of them positioned himself on the edge of the bumper to help control the fishtailing, and the other went over to the shoulder and started digging in the snow. "What in the world??" I thought. After digging for a few minutes, he walked further off the road towards the large fence and dug again. At this point I was seriously wondering if delirium was setting in - what was this guy doing? After a few minutes there, the man backed up, took a running start, and jumped - grabbing the top of the fence, and leaping over it to the woodsy area behind it. He dug around in the snow and after just a few more minutes it was apparent, finally, what he was doing. He was digging in the snow to find traction - branches, thatch, ground brush - anything he could grab to use to help the stuck car make it up the hill. Once he had obtained several sticks..etc... he threw them back over the fence, and took another running start from the other side, grabbing the top of the fence and forcefully lifting himself back over the top to the roadside. He gathered up all his findings and made his way back to the car where the other 3 good Samaritans had been holding the back of the car steady. Then, I watched. I watched as these 4 people, 3 of them with bare gloveless hands, laid the thatch and branches underneath the cars' back tires, would have him move forward a little bit and with their help pushing, actually started to inch along. After a few inches, the car would start to spin - and stop. And the same 4 people picked up the thatch and sticks, moved it in front of the cars' back tires, and inched him forward again. This happened the entire way up the hill. Once the car had made it over the crest, it was able to start cruising along again and the 4 volunteers returned to their cars and went on their way - followed by the rest of us now able to make it up the hill at a slow and steady pace since the stuck car had been moved.
I guess this stuck with me so much because it made me think - how often do we go out of our comfort zone to do what's right? To assist other people that may need help? I think of the 2 guys that were actually in front of this car - they had made it - they could have been on their merry way home, but instead they came back to help. How often do we pause, even when things are going well for us, to turn back and pick someone up who may be down, or who may be just a little behind us that could use some help. I think of the 2 guys that stopped our lines of traffic behind the car to help - easily targets of angry or impatient drivers, they could have been "booed" for their actions - but once people saw what they were doing, they realized it was actually going to help us all - not just the stuck car - so we could all make it up that hill in a safer way. How often do we stick our necks out for what is right, even though it may make those around us feel uncomfortable or say something about a wrongdoing even when the peer pressure is to stay silent?
We have all been in those situations over the course of life, but, I will argue as a special needs mom, I sometimes feel we are faced with more of those situations - it's just part of the territory. The action I witnessed that night on the road really spoke to me especially with a few incidents we have had to navigate in recent months with Meagan. Sometimes it is really hard to do the right thing - but just because it's hard doesn't mean it is the wrong decision. Matter of fact, it probably means the opposite. One of my main goals in raising my children has always been to make them compassionate and helpful adults - and with Meagan in the mix, it has really helped bring these qualities out of them. She is my strength and inspiration to stop standing silently in the crowd.
One day there was a woman behind us in line at Target in a wheelchair ....with a basket full of things that needed to go onto the counter. You could see her eyes assessing the situation as it moved closer to it being her turn. Reilly was standing with me - and I could tell immediately from her awkward glances and her shifting back and forth on her feet that she had noticed the same thing. From her body language, I could tell she wanted to help, but didn't really know how. I will admit, in these situations I tread lightly at times because while being helpful is a good thing, I also want to respect other people's independence, so when Reilly finally came to me and whispered that she wanted to help, I simply told her "... just ask first." So she took her shy little self over to the woman and I heard, quiet as a mouse, "May I put your things on the counter for you?" The woman's eyes lit up and she said "Why of course you can. Thank you!" The woman looked up at me and smiled, and Reilly's face had relaxed and beaming with pride, she slowly and carefully loaded the woman's items on to the counter. I will never really know if the woman needed Reilly to do that - but what I do know is that either way, she allowed Reilly to do something nice. That woman laid the thatch - helping Reilly learn that taking an uncomfortable chance was a good thing. She helped teach her that asking and helping accommodate was far better than watching, wondering, and then walking away.
Sometimes in life I feel like we get so caught up in rules and regulations and the status quo we forget that sometimes those rules are wrong - sometimes doing what is right is all that needs to be done to help our fellow human beings. We never know someone's situation, or the day they have had, or when there is just that moment someone needs a little faith in humanity. Those 4 guys getting out and helping the extraordinary ways they did probably thought nothing of it - but I noticed, and it touched me. And now an entire blog post about what those actions mean will reach many people.
Life is short - In situations where we witness a need, or see a wrong being committed, maybe instead of being blinded by "what has been" or the "status quo rules" we should stop, get out of our "safe zones"... get out of our "cars" and take the time to do what's right. Even if that means putting our hands in the freezing cold snow. Even if that means taking a leap of faith over the fence. Even if that means making other people possibly resent you or dislike you. We just never know what impact we will have for the greater good when we take these chances. We never know the lessons that may be learned or eyes that may be opened. We never know what it means for that child who yearns to make a difference, and is allowed to do so. More personally, we never know what it means to that special needs mom who just needs someone to recognize a tough situation and put tread under their tires to get them through it.
Dig in the snow. Jump the fence. Be uncomfortable to do what's right. People in the future faced with your same challenges, whom you may not even know, will be thankful that you took that chance, that you took the time to lay the thatch for them. And we will all be better for it.
“Moral principles do not depend on a majority vote. Wrong is wrong, even if everybody is wrong. Right is right, even if nobody is right.”
Archbishop Fulton Sheen
It was probably the 7th or 8th hour of our drive home on that icy day. I had all the girls in the car after getting them from my friend's house, and we were on the last leg of our trip home. Although finally only a few miles from home, this proved to be the worst part of our drive. Everything was iced over, many abandoned, broken down, or stuck cars were blocking the road along the way making it almost like a pinball machine to maneuver forward. We were heading up the last big hill of the main road, inching along when we suddenly came to a stop. About three cars ahead was a large sedan - obviously rear wheel drive - that kept spinning out and drifting sideways each time it tried to make it up this last hill. The two cars in front of me had stopped, and their drivers got out to go help push this car up the hill. However, even with their efforts, the car was hopeless - still spinning and at best was fishtailing in place. It would have been easy to give up, as it was seemingly impossible this car was going to be able to make the trek - even after the help of a few good Samaritans... but what happened next is what really struck me and has stayed with me as a life lesson.
Just when bystanders would assume the two guys would give up, two more guys in cars ahead of the stuck vehicle stopped and came backwards to assist. One of them positioned himself on the edge of the bumper to help control the fishtailing, and the other went over to the shoulder and started digging in the snow. "What in the world??" I thought. After digging for a few minutes, he walked further off the road towards the large fence and dug again. At this point I was seriously wondering if delirium was setting in - what was this guy doing? After a few minutes there, the man backed up, took a running start, and jumped - grabbing the top of the fence, and leaping over it to the woodsy area behind it. He dug around in the snow and after just a few more minutes it was apparent, finally, what he was doing. He was digging in the snow to find traction - branches, thatch, ground brush - anything he could grab to use to help the stuck car make it up the hill. Once he had obtained several sticks..etc... he threw them back over the fence, and took another running start from the other side, grabbing the top of the fence and forcefully lifting himself back over the top to the roadside. He gathered up all his findings and made his way back to the car where the other 3 good Samaritans had been holding the back of the car steady. Then, I watched. I watched as these 4 people, 3 of them with bare gloveless hands, laid the thatch and branches underneath the cars' back tires, would have him move forward a little bit and with their help pushing, actually started to inch along. After a few inches, the car would start to spin - and stop. And the same 4 people picked up the thatch and sticks, moved it in front of the cars' back tires, and inched him forward again. This happened the entire way up the hill. Once the car had made it over the crest, it was able to start cruising along again and the 4 volunteers returned to their cars and went on their way - followed by the rest of us now able to make it up the hill at a slow and steady pace since the stuck car had been moved.
I guess this stuck with me so much because it made me think - how often do we go out of our comfort zone to do what's right? To assist other people that may need help? I think of the 2 guys that were actually in front of this car - they had made it - they could have been on their merry way home, but instead they came back to help. How often do we pause, even when things are going well for us, to turn back and pick someone up who may be down, or who may be just a little behind us that could use some help. I think of the 2 guys that stopped our lines of traffic behind the car to help - easily targets of angry or impatient drivers, they could have been "booed" for their actions - but once people saw what they were doing, they realized it was actually going to help us all - not just the stuck car - so we could all make it up that hill in a safer way. How often do we stick our necks out for what is right, even though it may make those around us feel uncomfortable or say something about a wrongdoing even when the peer pressure is to stay silent?
We have all been in those situations over the course of life, but, I will argue as a special needs mom, I sometimes feel we are faced with more of those situations - it's just part of the territory. The action I witnessed that night on the road really spoke to me especially with a few incidents we have had to navigate in recent months with Meagan. Sometimes it is really hard to do the right thing - but just because it's hard doesn't mean it is the wrong decision. Matter of fact, it probably means the opposite. One of my main goals in raising my children has always been to make them compassionate and helpful adults - and with Meagan in the mix, it has really helped bring these qualities out of them. She is my strength and inspiration to stop standing silently in the crowd.
One day there was a woman behind us in line at Target in a wheelchair ....with a basket full of things that needed to go onto the counter. You could see her eyes assessing the situation as it moved closer to it being her turn. Reilly was standing with me - and I could tell immediately from her awkward glances and her shifting back and forth on her feet that she had noticed the same thing. From her body language, I could tell she wanted to help, but didn't really know how. I will admit, in these situations I tread lightly at times because while being helpful is a good thing, I also want to respect other people's independence, so when Reilly finally came to me and whispered that she wanted to help, I simply told her "... just ask first." So she took her shy little self over to the woman and I heard, quiet as a mouse, "May I put your things on the counter for you?" The woman's eyes lit up and she said "Why of course you can. Thank you!" The woman looked up at me and smiled, and Reilly's face had relaxed and beaming with pride, she slowly and carefully loaded the woman's items on to the counter. I will never really know if the woman needed Reilly to do that - but what I do know is that either way, she allowed Reilly to do something nice. That woman laid the thatch - helping Reilly learn that taking an uncomfortable chance was a good thing. She helped teach her that asking and helping accommodate was far better than watching, wondering, and then walking away.
Sometimes in life I feel like we get so caught up in rules and regulations and the status quo we forget that sometimes those rules are wrong - sometimes doing what is right is all that needs to be done to help our fellow human beings. We never know someone's situation, or the day they have had, or when there is just that moment someone needs a little faith in humanity. Those 4 guys getting out and helping the extraordinary ways they did probably thought nothing of it - but I noticed, and it touched me. And now an entire blog post about what those actions mean will reach many people.
Life is short - In situations where we witness a need, or see a wrong being committed, maybe instead of being blinded by "what has been" or the "status quo rules" we should stop, get out of our "safe zones"... get out of our "cars" and take the time to do what's right. Even if that means putting our hands in the freezing cold snow. Even if that means taking a leap of faith over the fence. Even if that means making other people possibly resent you or dislike you. We just never know what impact we will have for the greater good when we take these chances. We never know the lessons that may be learned or eyes that may be opened. We never know what it means for that child who yearns to make a difference, and is allowed to do so. More personally, we never know what it means to that special needs mom who just needs someone to recognize a tough situation and put tread under their tires to get them through it.
Dig in the snow. Jump the fence. Be uncomfortable to do what's right. People in the future faced with your same challenges, whom you may not even know, will be thankful that you took that chance, that you took the time to lay the thatch for them. And we will all be better for it.
“Moral principles do not depend on a majority vote. Wrong is wrong, even if everybody is wrong. Right is right, even if nobody is right.”
Archbishop Fulton Sheen
Friday, January 31, 2014
Outside the Box
One of the most popular questions I get from others is "How often everyday do you work with Meagan?" Truthfully, we don't work with her everyday. It's very important for her to reach her potential that we do push her of course. But I also just want her to be a kid. In whatever way that is. So there are also days, we just let her play however she wants to - or just let her hang out with the girls and "play"... which I think is equally as important for her development as her PT/OT/Speech..etc.
The times she plays with the girls are when I really love seeing Meagan blossom. I see her being silly, watching her sisters with intrigue as they talk or play, and even gaining her own "attitude" as she tries to "fit in" and make her mark among her siblings. I captured a few videos and pictures this last week of the girls playing with Meagan. She has learned so much from them. Nothing from a therapy book. Nothing from her goal chart from her coordinator. But in my eyes, things that are far more special to her than her typical therapies. While those are very important, I love how her sisters push her to think outside the box. Which is where Meagan likes to be. :)
The times she plays with the girls are when I really love seeing Meagan blossom. I see her being silly, watching her sisters with intrigue as they talk or play, and even gaining her own "attitude" as she tries to "fit in" and make her mark among her siblings. I captured a few videos and pictures this last week of the girls playing with Meagan. She has learned so much from them. Nothing from a therapy book. Nothing from her goal chart from her coordinator. But in my eyes, things that are far more special to her than her typical therapies. While those are very important, I love how her sisters push her to think outside the box. Which is where Meagan likes to be. :)
The girls showing Meagan the piano
Maura being silly and teaching Meagan about her dolls
Reilly and Meagan taking in some old school Country Music Videos
Teaching Meagan body parts....in their own way :)
Thursday, January 30, 2014
18 miles and 3 days later.....
For about a week, I had harbored a nasty viral cold - just the typical wintertime "crud" that everyone gets once a year. All 5 of the kiddos had been down with Strep on top of this virus, so being that moms never rest, I assumed that was why I was still sick when everyone else was getting better. I started to feel somewhat better with some of my symptoms, but I was still having pain in my chest and dizziness/fatigue..etc... I tried to rest and do what I could over the weekend, but finally as Monday came around and I really wasn't feeling "better" so I went ahead and made myself a doctor's appointment.
At my appointment, my doctor said actually I looked and sounded pretty good - she didn't think my residual cold was the cause of any of my issues. She then asked me if I knew I had a heart murmur. She said she heard a very significant murmur and wanted an echocardiogram to see the source to make sure it wasn't anything that needed attention. She made me an appointment for the following day with my cardiologist's office for the echo. I had a teaching obligation, so I asked her if it was necessary to do it that quickly or could it wait a week - she said based on the sound she would really like me in to the first available appointment. I said ok and left the office.
Fast forward to Tuesday morning. They had forecasted a winter storm coming through our area - but up until Tuesday morning, it was largely supposed to hit south and east of us - leaving us with a mere dusting and some cold nasty weather. Brian dropped the girls at school and headed into work. I dropped Maura at preschool, and headed to Buckhead for my appointment. I got there around 10am and my scan started around 10:30. About 11:45am, they finished up and we were headed home. As I was leaving the parking garage, my good friend called and told me they were letting the kids out of school at 1pm, as it had started to snow. I looked outside as we exited the garage and sure enough, it was flurrying. No big deal - I would just head to school, get the kids, and head home for the day.
Within one mile of getting on the highway, it was literally almost blizzard-like conditions. Snow everywhere. Big, wet, heavy snow that was freezing on contact when it hit the road. And cars were already stacked bumper to bumper. I was 18 miles from home.
Luckily my friend called again as she neared the school, knowing I was on my way home from my appointment - and learning how little I had moved in an hour, offered to grab my older four girls for me. I'm glad she did because in hindsight, if I had tried to get to the school, I would have never made it there - and possibly not made it home. I also decided to call Brian and warn him of the traffic - he said he was going to leave soon so he could get a head start home.
We inched along .. literally. Moving maybe an inch or two and then stopping for several minutes - sometimes 30-60 minutes at a time. I kept in touch with my friend who was still en route to get her kids (and mine) and finally she was able to get the kids. After an hour and a half, I decided to get off of 75. It was literally an ice rink - people were sliding everywhere, and frankly, traffic had come to a complete standstill. People were starting to abandon cars and walk - some ran out of gas, some broke down, and some just couldn't sit anymore .... cars and trucks were everywhere, and it was snowing like crazy. Visibility was not good. The next exit came up that was near enough to my house so I got off. I literally crawled around the ramp, slipping and sliding the whole way. I merged on to the main road and we stopped. We started to crawl along, inch by inch, never once touching our gas pedals. If you did, your car would start to slide straight sideways. So on we all went, just letting our cars pull us naturally over the ice and down the road. It took me 2 1/2 hours to go 2.3 miles to the next major intersection where I turned left to head towards my friend's house. She was also STILL on the road just a little bit ahead of me trying to get to her house (which was on my way home). As we sat on that next main road, I realized I was also almost out of gas. I heard so many "jokes" from others not in Atlanta about "why would people leave with no gas? See what happens when you wait until payday to fill up" etc etc... In fact, many people had full tanks of gas - but when you have been stuck in traffic for 7 hours, in subzero temperatures, and running the heat, the defroster, and many times the radio to hear traffic reports, the gas goes quickly. I noticed mine getting near the "E" and started to get nervous. I was only about a mile from the gas station but we were at a complete stop.
We finally started inching along about an hour later - I was really really close to my light coming on. I cut off my heat, the radio, and pretty much everything else hoping to conserve some gas. Finally we inched along and we started to round the curve. I was maybe 100 meters from the gas station - I could see it - but I couldn't get to it. We sat. For another HOUR. I saw several people start to get out of cars and walk - they were walking to the gas stations for gas, water, food, and anything else they needed. I saw one man who had been walking from very far away for gas - and on his way back noticed a car near me with a mom and kids had just run out of gas - he stopped, filled up her tank, and walked back on the long trek to the station to get himself gas - again - since he had given his to her. Traffic was pretty much at a standstill with people sliding and blocking intersections - and with others out of their cars trying to help total strangers. I just started praying that I at least make it to the gas station so I could fill up and sit back in traffic. Finally, we started slowly rolling forward.. little by little and I was able to turn into the gas station. The first two pumps I tried were frozen and not working - the third pump I tried worked, thank goodness, and I filled up the tank. I made my way back out onto the road... we were held up for a bit with people trying to make it into the other gas station - people were sliding up and down the entry drive, and others had stopped on the main road to go help those sliding push their cars the rest of the way.
By now it was about 4:30 and I was 2 miles from my friend's house. She had just made it home herself, after getting the kids from school at lunchtime (she only lives 5 miles from the school). I told her I had left the gas station and was inching my way towards her house. It took me an hour to go those 2 miles. Cars were sliding left and right - and finally I was able to make my way into her neighborhood. At 5:30 I arrived at my friends house - I got the kids in the car, and checked on Meagan, who had been with me the whole time. She was ok - but getting hungry. Her feeding pump had died and I had no car charger for it - and also realized her medication time was fast approaching, and I did not have her seizure meds with me. We went out the back way of my friend's neighborhood.... there are two lane "country" roads that way, but, I figured they could be no worse than the main roads - and I was hoping since they are less traveled the snow would have at least packed down a little more. We made our way out the back roads and cut over towards the main road - still inching along. Although definitely more snow packed, the top of the snow at this point was frozen and conditions were very icy..even on these roads. We finally made it to the end of the road where we turn at the stop sign to get back on the main road - Luckily, we were turning to go down the hill to the main road. People coming up the hill to go where I had come from were sliding straight down backwards - no one was making it up the hill. I put my brakes on, put the van in neutral, and slid down the hill to the traffic light. Once there, I put the van back in drive and waited for someone in the snake-like line of cars to let us merge in. Still not using the gas pedal (which only resulted in immediately loss of control), we slowly made our way into the line of traffic and started on our last leg of the trip back to the house.
The rest of the trip took 3 hours. Yep... 3 hours to go the last 5.8 miles. It was the scariest part of our drive for many reasons - the ice was way worse at this time - by this time so many cars had been traveling over the road... and sitting for hours at a time, that the ice was slick as ever. The little strips of snow to grab traction were non existent. Abandoned cars were like obstacles sitting in the roads - as we would glide by, it was like threading a needle to make it through certain sections of the road without hitting a parked or abandoned car. At one point, police had blocked off part of a hill because everyone trying to navigate down this hill was ending up on the curb or in the ditch - so they were stopping traffic and one by one, we were riding our brakes, sliding down the hill to make it to the next section of the road - all the while, avoiding the cars that hadn't made it and were scattered along the sides of the street and the medians. The only way I made it was to keep changing lanes - every time the road curved to the right, I would get into the right lane so my van could "bumper" off the curb as we slid to the side making our way along the road - and when the road would curve left, I would get into the left lane so my van could "bumper" along the curb on that side. Those that didn't follow this snake like pattern ended up going off the road, or side sliding into the cars next to them as the road changed directions. Once we made it to the last main intersection before the back roads to our neighborhood, we stopped again. People who had been turning on to the road were starting to get stuck mid-intersection. So those of us trying to go across had to, again, "thread the needle" trying to let our cars pull forward while the wheels were also sliding sideways to get across the intersection. Once across the intersection, and onto the back roads, they were again, much more snow packed than our entire trip home. At this time, about a mile from our house, it was the FIRST time since 11:45 that morning - since leaving my doctor appointment, that I was able to actually use my gas pedal and not immediately slide sideways. My tires were gripping the snow pretty well so we were able to get up to about 20-30mph on this last leg of the drive.
To get into our neighborhood, there are hills going down. At both entrances. One entrance, however, has a very steep, short and curvy hill - although shorter, I chose to avoid this just in case I lost control of the van - there's no room for correction and nowhere to go if we were to slide. The other entrance also has a curvy downward hill, but, it's very long... so much better if we needed to slide at all... and this entrance was also closer to our house. As we turned into this entrance, the kids started suddenly asking me "Mom! What is that noise!?" I explained to them that the "noise" was our van sliding down the hill - my wheels weren't turning at all, but sliding down the ice on the hill ... and that's what we did. I rode our brakes the entire way and we were able to make it down to the stop sign without going into anyone's yard or mailbox (thankfully). At the stop sign, all we had to do was turn left and drive to our house. Only problem is - that street is a huge long hill - straight up. Our neighbor said they had made it up a few hours earlier, so I figured we would give it a go. We got about 3/4 of the way up, when our van started to slide straight backwards. I knew at that time we weren't going to make it, so I put the van in neutral and backed up down the hill and parked at the curb.
Meanwhile, our neighbors who live at the top of the hill had made their way down with their ATV. As I got things secured out of the van, and got Meagan out, the neighbors started running each of the girls to the house in their 4 wheeler. I gave Reilly the garage opener and sent her on first knowing she could handle getting into the house by herself. Then one by one our neighbor came back and got Kaitlin, Anna, and Maura. Meanwhile, I took Meagan and walked. Finally, around 8:45pm, after almost 9 hours of driving, all 6 of us were safe and sound in our house.
You may have noticed I said "all 6 of us"..... that's because at that time, Brian was still driving. He had now been in the car almost 8 hours and had gone 9 miles. Total. The highway had come to a complete standstill - this had happened all day long on all roads - but this time, it wasn't starting to inch along again. It just permanently stopped. We started thinking of a "plan B" because it was apparent at that time he wasn't going to make it home. We knew some good friends of ours lived about 2 miles from the exit where he was stuck. The problem was, nothing was moving - so he couldn't get over there quickly if he wanted to. He was finally able to work his way off the exit and decided to try and get there to spend the night. Three hours later, he called me and said it wasn't going to happen. It was total and utter gridlock. In every direction. He hadn't moved. As gorgeous as the hills of Atlanta and her suburbs are, it makes traveling in these conditions just impossible. No one could make it up or down hills - the highway was at a standstill, and so Brian turned around again and went into the parking lot of a famous diner that happened to be right there. His first plan was to go to the diner since they were still open - but they had run out of food. At that time, the grocery store in that shopping center, (Publix), had decided to open up and let stranded motorists inside. He decided to stay there because nothing else was moving anywhere... it was approaching midnight,... and even if he sat in the traffic, without it moving he would run out of gas and have no where or way to get more gas. So my husband spent Tuesday night half in his car, and half in a grocery store. When Wednesday morning came and he looked out on to the highway - he saw the SAME cars he had been waiting with the night before were still there. Nothing had budged. He decided to get food there and wait it out longer. The traffic was so gridlocked, and so many cars had been in accidents, or abandoned, or iced to the roads, that the on ramps were shut down. It was announced they would try and reopen them at 10am, but 10 came and went. At that time he decided to try again to make it to our friends' house, which was still 2 miles away. He was going to walk, but after a while, the side streets started to inch again so he slowly made his way to their house. He got there that afternoon and stayed there until today. He just got home this afternoon to our house ... after almost 24 hours stranded and then another day and night at our friends house - Brian finally got home.
Waiting for Brian to get home the last two days, the kids have been making the best of it - playing in the snow, sledding down the icy streets to steep to navigate, and having hot chocolate and movie days. I have been with them of course, and also getting several things done around the house. I have also been reading a lot of articles and comments on the conditions this week and was very disappointed in a lot of the "rhetoric" people chose to spew about "those Southerners..." Despite the craziness, the chaos, the gridlocked traffic, the blizzard like driving, the dangerous icy conditions, the 6 inches (not one inch) of snow and 1-2 inches of ice at our house.... there was a lot of positive happening. All along the way home, I saw so much goodness - people bringing food and water to those stranded... people picking up total strangers who were walking in the snow to make it home.... people who offered stranded drivers the gas they had walked to get for themselves - only having to turn around and walk..again.. the miles to re-fill the gas jugs they just emptied for a stranger.... countless stories of first responders and emergency personnel helping those in dire need... countless stories of everyday people helping total strangers - whether it be pushing their car up a long hill, riding their ATV's to shuttle the walkers to the nearest shelters, private businesses and restaurants opening their doors offering people not only shelter, but food ... for free... or those who had already made the long treks home when their cars ran out of gas who would venture back out to just stand on the side of the road offering free hot chocolate or snacks to those still stuck in the gridlock. There was so much humanity that I witnessed, and heard about from other friends who had also been stuck, but honestly, none of that surprised me. At all. Being a Northern "transplant" myself, and having lived in several places growing up, I can tell you there is just a very special culture down here.. that ...well..... just "is." And it is that way everyday. In everyday ordinary situations. So in extraordinary situations like this week, that "Southern spirit" was even more evident - makes me very proud to be part of this greater community and all the wonderful people who live here.
Personally, we would like to thank our friends who grabbed my girls for me from school (we are so grateful because close to 3,000 students in the greater Atlanta area were stuck at school overnight and there's no way I would have made it there), our friends and neighbors who met us at the front of our neighborhood shuttling my kids to the house quickly when we couldn't navigate the hills, our neighbor who made the trek to a store yesterday and knowing Brian was still gone, brought us a few things to get us through today, and our friends who took in Brian for the last day and night to give him a warm safe place to stay. 18 miles and 3 days later... what an amazing, scary, and crazy adventure this week has been!
[This is a great article with good perspective on what happened here if you want to read more.]
At my appointment, my doctor said actually I looked and sounded pretty good - she didn't think my residual cold was the cause of any of my issues. She then asked me if I knew I had a heart murmur. She said she heard a very significant murmur and wanted an echocardiogram to see the source to make sure it wasn't anything that needed attention. She made me an appointment for the following day with my cardiologist's office for the echo. I had a teaching obligation, so I asked her if it was necessary to do it that quickly or could it wait a week - she said based on the sound she would really like me in to the first available appointment. I said ok and left the office.
Fast forward to Tuesday morning. They had forecasted a winter storm coming through our area - but up until Tuesday morning, it was largely supposed to hit south and east of us - leaving us with a mere dusting and some cold nasty weather. Brian dropped the girls at school and headed into work. I dropped Maura at preschool, and headed to Buckhead for my appointment. I got there around 10am and my scan started around 10:30. About 11:45am, they finished up and we were headed home. As I was leaving the parking garage, my good friend called and told me they were letting the kids out of school at 1pm, as it had started to snow. I looked outside as we exited the garage and sure enough, it was flurrying. No big deal - I would just head to school, get the kids, and head home for the day.
Within one mile of getting on the highway, it was literally almost blizzard-like conditions. Snow everywhere. Big, wet, heavy snow that was freezing on contact when it hit the road. And cars were already stacked bumper to bumper. I was 18 miles from home.
The traffic situation in the greater Atlanta area almost immediately
Luckily my friend called again as she neared the school, knowing I was on my way home from my appointment - and learning how little I had moved in an hour, offered to grab my older four girls for me. I'm glad she did because in hindsight, if I had tried to get to the school, I would have never made it there - and possibly not made it home. I also decided to call Brian and warn him of the traffic - he said he was going to leave soon so he could get a head start home.
We inched along .. literally. Moving maybe an inch or two and then stopping for several minutes - sometimes 30-60 minutes at a time. I kept in touch with my friend who was still en route to get her kids (and mine) and finally she was able to get the kids. After an hour and a half, I decided to get off of 75. It was literally an ice rink - people were sliding everywhere, and frankly, traffic had come to a complete standstill. People were starting to abandon cars and walk - some ran out of gas, some broke down, and some just couldn't sit anymore .... cars and trucks were everywhere, and it was snowing like crazy. Visibility was not good. The next exit came up that was near enough to my house so I got off. I literally crawled around the ramp, slipping and sliding the whole way. I merged on to the main road and we stopped. We started to crawl along, inch by inch, never once touching our gas pedals. If you did, your car would start to slide straight sideways. So on we all went, just letting our cars pull us naturally over the ice and down the road. It took me 2 1/2 hours to go 2.3 miles to the next major intersection where I turned left to head towards my friend's house. She was also STILL on the road just a little bit ahead of me trying to get to her house (which was on my way home). As we sat on that next main road, I realized I was also almost out of gas. I heard so many "jokes" from others not in Atlanta about "why would people leave with no gas? See what happens when you wait until payday to fill up" etc etc... In fact, many people had full tanks of gas - but when you have been stuck in traffic for 7 hours, in subzero temperatures, and running the heat, the defroster, and many times the radio to hear traffic reports, the gas goes quickly. I noticed mine getting near the "E" and started to get nervous. I was only about a mile from the gas station but we were at a complete stop.
My view sitting right near the gas station - if you can see in the distance, I had to make it to that traffic light to turn into the gas station. But this is where I sat. For an hour. I kept a good distance from the cars in front of me for good reason. Our lanes were trying to shift - on ice - to get around the abandoned car blocking the way.... come to find out, they, too had run out of gas.
We finally started inching along about an hour later - I was really really close to my light coming on. I cut off my heat, the radio, and pretty much everything else hoping to conserve some gas. Finally we inched along and we started to round the curve. I was maybe 100 meters from the gas station - I could see it - but I couldn't get to it. We sat. For another HOUR. I saw several people start to get out of cars and walk - they were walking to the gas stations for gas, water, food, and anything else they needed. I saw one man who had been walking from very far away for gas - and on his way back noticed a car near me with a mom and kids had just run out of gas - he stopped, filled up her tank, and walked back on the long trek to the station to get himself gas - again - since he had given his to her. Traffic was pretty much at a standstill with people sliding and blocking intersections - and with others out of their cars trying to help total strangers. I just started praying that I at least make it to the gas station so I could fill up and sit back in traffic. Finally, we started slowly rolling forward.. little by little and I was able to turn into the gas station. The first two pumps I tried were frozen and not working - the third pump I tried worked, thank goodness, and I filled up the tank. I made my way back out onto the road... we were held up for a bit with people trying to make it into the other gas station - people were sliding up and down the entry drive, and others had stopped on the main road to go help those sliding push their cars the rest of the way.
By now it was about 4:30 and I was 2 miles from my friend's house. She had just made it home herself, after getting the kids from school at lunchtime (she only lives 5 miles from the school). I told her I had left the gas station and was inching my way towards her house. It took me an hour to go those 2 miles. Cars were sliding left and right - and finally I was able to make my way into her neighborhood. At 5:30 I arrived at my friends house - I got the kids in the car, and checked on Meagan, who had been with me the whole time. She was ok - but getting hungry. Her feeding pump had died and I had no car charger for it - and also realized her medication time was fast approaching, and I did not have her seizure meds with me. We went out the back way of my friend's neighborhood.... there are two lane "country" roads that way, but, I figured they could be no worse than the main roads - and I was hoping since they are less traveled the snow would have at least packed down a little more. We made our way out the back roads and cut over towards the main road - still inching along. Although definitely more snow packed, the top of the snow at this point was frozen and conditions were very icy..even on these roads. We finally made it to the end of the road where we turn at the stop sign to get back on the main road - Luckily, we were turning to go down the hill to the main road. People coming up the hill to go where I had come from were sliding straight down backwards - no one was making it up the hill. I put my brakes on, put the van in neutral, and slid down the hill to the traffic light. Once there, I put the van back in drive and waited for someone in the snake-like line of cars to let us merge in. Still not using the gas pedal (which only resulted in immediately loss of control), we slowly made our way into the line of traffic and started on our last leg of the trip back to the house.
The rest of the trip took 3 hours. Yep... 3 hours to go the last 5.8 miles. It was the scariest part of our drive for many reasons - the ice was way worse at this time - by this time so many cars had been traveling over the road... and sitting for hours at a time, that the ice was slick as ever. The little strips of snow to grab traction were non existent. Abandoned cars were like obstacles sitting in the roads - as we would glide by, it was like threading a needle to make it through certain sections of the road without hitting a parked or abandoned car. At one point, police had blocked off part of a hill because everyone trying to navigate down this hill was ending up on the curb or in the ditch - so they were stopping traffic and one by one, we were riding our brakes, sliding down the hill to make it to the next section of the road - all the while, avoiding the cars that hadn't made it and were scattered along the sides of the street and the medians. The only way I made it was to keep changing lanes - every time the road curved to the right, I would get into the right lane so my van could "bumper" off the curb as we slid to the side making our way along the road - and when the road would curve left, I would get into the left lane so my van could "bumper" along the curb on that side. Those that didn't follow this snake like pattern ended up going off the road, or side sliding into the cars next to them as the road changed directions. Once we made it to the last main intersection before the back roads to our neighborhood, we stopped again. People who had been turning on to the road were starting to get stuck mid-intersection. So those of us trying to go across had to, again, "thread the needle" trying to let our cars pull forward while the wheels were also sliding sideways to get across the intersection. Once across the intersection, and onto the back roads, they were again, much more snow packed than our entire trip home. At this time, about a mile from our house, it was the FIRST time since 11:45 that morning - since leaving my doctor appointment, that I was able to actually use my gas pedal and not immediately slide sideways. My tires were gripping the snow pretty well so we were able to get up to about 20-30mph on this last leg of the drive.
To get into our neighborhood, there are hills going down. At both entrances. One entrance, however, has a very steep, short and curvy hill - although shorter, I chose to avoid this just in case I lost control of the van - there's no room for correction and nowhere to go if we were to slide. The other entrance also has a curvy downward hill, but, it's very long... so much better if we needed to slide at all... and this entrance was also closer to our house. As we turned into this entrance, the kids started suddenly asking me "Mom! What is that noise!?" I explained to them that the "noise" was our van sliding down the hill - my wheels weren't turning at all, but sliding down the ice on the hill ... and that's what we did. I rode our brakes the entire way and we were able to make it down to the stop sign without going into anyone's yard or mailbox (thankfully). At the stop sign, all we had to do was turn left and drive to our house. Only problem is - that street is a huge long hill - straight up. Our neighbor said they had made it up a few hours earlier, so I figured we would give it a go. We got about 3/4 of the way up, when our van started to slide straight backwards. I knew at that time we weren't going to make it, so I put the van in neutral and backed up down the hill and parked at the curb.
Maura ready to get to the house on her 4 wheeler ride
Great street for sledding. Not so good to make it all the way up on sheets of ice.
Personally, we would like to thank our friends who grabbed my girls for me from school (we are so grateful because close to 3,000 students in the greater Atlanta area were stuck at school overnight and there's no way I would have made it there), our friends and neighbors who met us at the front of our neighborhood shuttling my kids to the house quickly when we couldn't navigate the hills, our neighbor who made the trek to a store yesterday and knowing Brian was still gone, brought us a few things to get us through today, and our friends who took in Brian for the last day and night to give him a warm safe place to stay. 18 miles and 3 days later... what an amazing, scary, and crazy adventure this week has been!
[This is a great article with good perspective on what happened here if you want to read more.]
Scouting a good sledding start spot on our hilly streets (great for sledding - after the curve goes on a big drop down a huge hill)
Reilly helping Maura get a good head start down the hill
What Meagan thinks of sledding
Kaitlin's snowman... Olaf?
Meagan is not happy about hats!
Monday, January 20, 2014
Meagan's 3 Step Program
Step 1 - give Meagan food.....she touches it.
Step 2 - watch Meagan stare at said food... possibly lick it, and spit it out...
Step 3 - Watch as she deliberately destroys said food into 1000 crumbled
pulverized tiny hard to pick up pieces....
Great for OT..... Notsomuch for nutrition.
And this is why we love Meagan's G-tube! LOL
Thursday, January 16, 2014
Wheelchair Fitting... check!
After 9 months with a gtube, Meagan has finally discovered it. That may seem silly to say - but it's true. Yes, she has glanced at it before. Yes, she has realized its presence when it has been feeding time - but she has never really cared. Or taken notice. Or tried to do anything with it. Think of the moment when you first see a child realize they have hands. Or fingers. Or feet. Or anything else... That look of wonder and amazement ... "...these things are actually ON me??" This happened last night with Meagan and her button.
I was changing her for bed and left her shirt off while I changed her diaper. As I sat her up next to me, she looked down and patted her stomach. I said, "belly!" The next thing I knew, her eyes lit up and she reached over to her button and started to pat it as well. I told her "button!" She looked at me .. and then looked back at her button and kept patting it. It must have been so fun to her, she then began to twist it... and then she began to pull at it. And pull at it. I was happy with her new discovery, but at the same time really did not want to learn on the fly how to replace a g-button (we have an appointment in a few weeks with Dr. B to do this for the first time)... nor did we need an unnecessary trip to the ER during flu season, so I gently reached down and moved her hand and said (and signed) "No." Meagan looked at me and said "No!" ..and then continued to pull at her button. I said and signed "No! Stop it." Meagan again looked at me and said "No. Stop it."
Uh oh.......
In other news of the day, Meagan was fitted for her wheelchair today. Yay! She will be getting a Zippie Voyager - it will provide the support she needs, but also be adaptable to our active family lifestyle.
Photo of what Meagan's stroller style wheelchair will look like...
It can go inside or outside and is approved for bus transportation... so when she starts school in the Fall, she can go right onto the bus in this chair. It has a large tray we can put on for times when we are places where she may need to patiently (or not) wait for her sisters so we can put toys on it, or ipad games, or whatever is needed to help entertain her.
It has an easy fold down and the PT said this should be able to fit right into the back space in our minivan. It will have a place to safely and securely hang her feeding bag when she is on a feed, but most importantly, it will provide the positioning support Meagan needs. I know many see her doing "well" and starting to sit..etc. This is all wonderful, for sure - but - she still needs a lot of support and has lots of times where she really needs more than her stroller can provide. Meagan sits now by pulling mostly with her upper trunk and front of her belly. What this means is she is now getting a curve in her lower back - we have noticed this a little bit a few weeks ago but the PT said today it was much more prominent. Meagan is also starting to not hold her hips underneath her - rather letting them curve forward and let her lower back push outward, exacerbating the curve. Though Meagan can fit in her stroller still, this chair will be a huge blessing for her lower back and overall development and safety. The PT said it will have the lower lumbar support she will need to hopefully help correct this curve before it becomes a serious issue because as it is now, she generally sinks into the back of her stroller, which is making her lower back worse.
Quick video showing some of the features.....
...and one of the fold down
It will take about 3 months until Meagan gets her chair - and the insurance process could be a nightmare so pray that it is approved and all goes smoothly! We are excited for April when Meagan will finally be in a device that is both comfortable for her, but functional as well in so many ways her stroller is starting not to be. We are excited for this new step in Meagan's journey and can't wait to see her in her new wheels! Plus, it will have a pink canopy - what girl wouldn't love that?!
Tuesday, January 7, 2014
Meagan's Epiphany
Despite the frigid temperatures and the older kids being out of school, Meagan was back to her regular schedule. She started off the week with her usual PT appointment. We didn't really know what to expect as we had just arrived home from a visit to our in laws in Florida late the night before. Everyone was tired, especially Meagan, but I figured she would still be excited to get back into her routine.
Meagan's therapist, (Ms. M), came ready to try a few new things, but what we didn't realize is that Meagan was going to show us a few new things instead. After working on sitting for a while, Meagan showed interest in Ms. M's phone. Ms. M slid her phone across the floor so we could continue working with Meagan on her sitting and reaching across to grab toys.... then to our surprise, Meagan pushed her bottom forward and moved about an inch. She seemed just as surprised as us and seemed to realize "Hey, I can move! I can get that phone!" Then she reached her long arms out and grabbed the phone. Ms. M then said "I wonder if she will go further...."....After a few minutes, Ms. M purposefully slid her phone across the floor. After Meagan sized up the situation, this is what followed:
Meagan's therapist, (Ms. M), came ready to try a few new things, but what we didn't realize is that Meagan was going to show us a few new things instead. After working on sitting for a while, Meagan showed interest in Ms. M's phone. Ms. M slid her phone across the floor so we could continue working with Meagan on her sitting and reaching across to grab toys.... then to our surprise, Meagan pushed her bottom forward and moved about an inch. She seemed just as surprised as us and seemed to realize "Hey, I can move! I can get that phone!" Then she reached her long arms out and grabbed the phone. Ms. M then said "I wonder if she will go further...."....After a few minutes, Ms. M purposefully slid her phone across the floor. After Meagan sized up the situation, this is what followed:
We were shocked...and surprised.. and happy! My girl was figuring out how to get where she wanted to go. It was an amazing moment, and we could tell Meagan was also extremely happy. It seemed as if, quite literally overnight (as I have said times before) something else had suddenly "clicked" with Meagan. She had lived another revealing moment.
Ms. M was very excited at Meagan's new motivation to want to move. She said it would be the perfect time to start facilitating her arms and knees to build strength and balance. Meagan absolutely HATES being on her knees or having to be on her belly at all. But we really need to build her arm strength. Yes, she pushes forward. But she will not extend them and weight bear on them in a forward position, which is important for crawling and protecting herself when she falls. We want to improve this so we can continue to help her move more efficiently with more strength. We have tried working with Meagan on all fours on the floor, with toys, etc... and every time it ends in screaming, arching and complete refusal on her part. Some parts of PT are hard of course, but working on her knees was completely non productive screaming and only made it a bad experience for her.
Meagan fighting knee time
Ms. M helping show Meagan how she can use her knees
Not a happy Meagan - time for a new plan!
Then Ms. M had an idea today - what about steps. She suggested we work on the steps with Meagan to help facilitate her arm and knee movements, but change up the scenery, so to speak, and see if it helped. Well, there's a reason we love Ms. M... her suggestions are usually right. She knows Meagan SO well, and much to our surprise, Meagan let Ms. M help her on her knees and work with her several times on the steps. Meagan would actually clap for herself when resting and when Ms. M made her work again, I could physically see Meagan's body shaking with effort. I started to realize just how hard Meagan had to literally "try" for every movement. I was amazed by her spirit.
Today was full of many discoveries and excitements. Having just celebrated the Ephiphany of our Lord the previous day, the lessons of that feast day were on my mind... there was just no better way to describe the chain of events in therapy - Meagan had certainly had her own epiphany 1 these few things just all of a sudden made sense to Meagan and she not only put forth effort on her own, but seemed to "get" where this was leading. It was also an epiphany to me in ways - I realize how far Meagan has come and how far she has to go - but I often forget of the things we see as so simple. Today on the steps when she was really struggling but kept trying and trying, as I watched her little arms shake and her head become heavy, I realized the true grit of her will. No measure of strength I have will match to what I witnessed. It was amazing to watch and I was so proud of my little 20 pound 2 1/2 year old spitfire for pushing through and finally trying something new.
Just as our Lord revealed himself to the Magi many years ago, little glimpses of the amazement they must have felt have come through in Meagan's triumphs yesterday. I don't think this happened by accident - God has His hand in everything, and Meagan doing what she did at that particular time was definitely meant to be. I cannot wait to see what other epiphanies she has along this journey. So many things seem to be falling into place right now as far as her grasping on to her potential, and giving her all to reach who she is meant to be.... I think the next several months hold a lot of excitement for Megs - something tells me 2014 is going to finally be her year. For now, rest sweet girl - you had an amazing day ... we love you.
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