Little Steps Big Emotions

Our youngest Max took his first consecutive steps today. Five of them. It was a magical moment. Daddy was feeding Charlotte in the kitchen within eyesight and I was on the floor with Max playing with wooden blocks. He stood up with a block in each hand. I was fully expecting him to throw them. But he spotted the leapfrog activity table. You could see the wheels in his head turning. It would take more work for him to throw the blocks down, then get to his knees crawl the five steps to the table, then to have to stand up, then it would be to try to just make it upright. So off he went, one slow step after another. I was excitingly counting the steps while Neal watched from the kitchen. 1...2...3...4....5 steps!!!! Yay!!! Max took five steps!!! Excitement, pride, jubilation. And then...

My stomach dropped, my excitement didn't feel solely like excitement anymore. It was much more complicated. And I was suddenly crying, and it was not happy tears well mostly not. It took me a minute to figure out what was going on. The I heard my therapist's voice "what are you REALLY feeling." So I started thinking about what I was really feeling and ironically it was five totally different emotions. I guess one for each of Max's steps. I was feeling Joy, Awe, Fear, Guilt, and Grief. 

This was not right. This is not how it is supposed to be when your child takes their first steps. Except in our reality this is what it was. And I knew I would have to blog to totally figure this out, lucky for you guys (wink.) Alright, Let's elaborate a bit on these emotions. Let's get the yuckys out of the way first.

Grief. As you all know. Max is not our first born and his feet should not have been the first to walk our floors. The little girl that sat feet away in her high chair should have been the first. I should have felt this joy last year when she was his age. We should have been able to celebrate this milestone with her. That is how it is supposed to me. That is typical right? Last night, we were practicing bearing weight with Lottie and I was holding her against my chest, standing her up as tall as she could go, and Neal said to me "wow, she's tall." I replied excitedly "you hold her! Let me see." She is tall. We've never noticed that. We don't get to see her upright unless she is in equipment or being held. We both sat there wondering what she would look like toddling around our house. Grief. 

Guilt. I immediately felt as though I was giving Max's steps too much attention and that I didn't want Lottie to think that this was a huge deal. I also felt guilty that I hadn't worked a miracle and gotten her to this point before him. Guilt that I will always have one child meeting milestones faster than the other. Then my guilt shifted to Max. I felt terrible that I couldn't just stay in this moment with him. That all of his firsts will feel a bit bittersweet. Guilt that I do not have this special needs/typical mommy thing down at all. Guilt.

Fear. My first fears were the typical parent fears of "oh here we go, how will I keep up with him now." Then I thought about tomorrow, the wheelchair salesman coming back to have us make a final decision on if we want to pull the trigger on a power wheelchair for Lottie. Fear that she may never take those first steps, fear she may never fully be able

to cognitively control the joystick. Fear that again Max's Big moment will be quickly overlooked for Charlotte's. Fear.

Awe. This is when things feel a little better. Having a child that works so very hard to meet the typical child's milestones helps you appreciate how awe inspiring these milestones are. How when one certain mechanism of the body is off i.e. muscle tone  it can effect how the whole body does what it needs to do. The body is amazingly complex. Some would say fearfully and wonderfully made. In walking the brain, muscles, joints, bones all have to work together to make a step. And there may even be more complexity to it. It's amazing. Awe.

Joy. Overwhelming joy. Even though the ecstasy felling only lasted a few seconds and those moments were very precious. There is joy even in the other emotions. It's hidden. But it still hangs on. Here's why. I have a whole lot of hope. I have faith that God is doing immeasurably more in Charlotte's life than I can even ask for or imagine. I have crazy mama bear optimism that I will see Lottie's feet take those first steps too and that Max will be right there cheering her on. And I even have a back up hope for if it doesn't happen, I know where my peace will come from. 

Tonight, I feel all of these things. Honestly, the Grief and Fear have dominance and the Joy is trying hard to seep through. And I know it's normal and I know this will happen again. And maybe, hopefully I will be a little better prepared to hold on to the joy a bit longer next time. This life didn't come with a manual, no ones does, so we learn from experience and we move forward. 

Max, your first steps were super important and we love you very much! And we pray the same for you that we do for Lottie, the God will do immeasurably more with those little steps than we can ask or imagine. You rock little man! 

 

Some More Hate Mail

Dear Congenital Myotonic Muscular Dystophy,

First let me say, you still suck! There are thousands of families in this world suffering because of you. Today, I am just relieved that we are not one of them. Just like many of the other nasty diseases and disorders we have had to endure waiting weeks or months to find out about, we once again have been spared another connection. I know this will not always be the case. Probably one day, there will be a name that we have to connect with our sweet Lottie. It will most likely be a friend of yours, in the same villianous family of muscle disease. 

Trust me, when we meet said foe, we will be a force to be reckoned with, we already are and he remains invisible by name. You can tell your friend, that Lottie has an army. An army of family, friends, therapists, online supporters and most importantly God. So he should watch out. 

The relief we feel knowing it's not you is overwhelming. We know that you are a nasty bloke who infects not only the one but generations and would have taken your toll on me later in life. We also know you would have severely stifled Lottie's development. Boo Hiss! Someday there will be a scientist that finds a cure to eradicate you! Who knows? Maybe it will be Lottie? Wouldn't that be fun! Until then ta-ta!

                         Sincerely,

                                  Mama Bear

It Takes a Village part 1

An old African Proverb famously states that it takes a village to raise a child. And as a mother of two small children I say a big amen!! And as a mother of a child with special needs I shout a big AMEN! 

I realize that not all mothers are given villages. Some are even robbed of their child's father being available and to those women, you are brave and somehow a lot of you make a village out of yourself. I applaud you. 

I have been blessed with a pretty nice sized village and each member play a very important role in Charlotte's life. Today I want to honor two of those village members that went above and beyond to get Charlotte and I through a challenging day. 

Today was wheelchair day. It has been something we have been taking about for months and something Neal and I have had mixed emotions about. As we approached today I was getting really excited, I was daydreaming of Charlotte's  instant independence. Neal was worried she would become too dependent. Both emotions WAY too premature.

So this afternoon approached. Our Physical Therapist and our Occupational Therapist were here right on time. Max was napping. Charlotte was happy. The wheelchair and the wheelchair guy would be here any minute. Everything was going as planned. HA! Minutes pass...more minutes... Max woke up. Our PT called Wheelchair man, there has been a mix up. He is so sorry he will be here so soon (45 minutes.) PT is going to have to leave before he gets there. Panic is setting in, plans are changing. I look over at OT and she says she will stay. 

You see, she is an employed Occupational therapist that has been coming weekly since Charlotte was 7 or 8 months old. And whether she likes it or not she is a part of our village. She may be a paid part but we love her and she loves Charlotte so she is a part. She has talked me though many medical decisions with empathy and honesty. She researches MY child on her own time. She gets its! She is a special needs mom herself. Her presence and assistance when that wheelchair showed up and was not at all right for Charotte was more helpful and comforting than I could ever put into words. She helped make a plan for a different chair and helped us keep the wheels turning. Thank you Sheri! 

Another vital member of our village showed up today, even though I didn't ask him to check in on me. My dad. Charlotte's Oompah. He came over just to see how I was doing with the transition of having the wheelchair in our home. His presence was comforting. He stayed and helped with Max and quietly observed. If you know my dad, you know one of his gift is showing up. And when he does he has a spirit of comfort and peace. My dad has always come to the rescue for all of us. He cares so deeply and loves so wholy. My dad has a way of cheering me up and is a great conversationalist. I wonder where I get that from. Thank you Daddy! Love you! 

Tomorrow, we will have another wheelchair come and it will just be Neal and I when it arrives. But I know that all my online readers (village) will be praying and thinking of us as we start this new chapter. 

Upset in My Plans Part 2

I needed to split this post into two parts for a very important reason. I felt I had to be very careful how I approached the next part of the story. I want to be able to look back on this in 15 years or have Max look back on this in 15 years and understand and love where I was coming from. I also want my audience to understand that I am just telling a small part in our story and that it is very important to read to the end. So here we go...

October 20th, 2013, that was the day I was to be induced. We were to arrive at the hospital at 4 in the morning and they would start petocin and we would be on our way to meeting our precious little boy. 3 am we received a phone call that the hospital was overbooked with emergency deliveries and they would call us when they could fit us in. Again, it totally messed up my plans, and I went into anxious Katie mode. Forget sleep, I wanted to be in the hospital having this baby now! I don't remember all the details but they said they would call by a certain time and of course they didn't so I called them. They still had no room at the inn. So I decided to pull a diva move, and call my doctor to see if she could pull some strings. Don't judge me. I was not in the right state of mind. And because she is AWESOME, she got us in by 1pm. I don't think the hospital loved it, but whatever. I got the petocin at around 4pm and Little Max dramatically made his   entrance into the world a little after 1 am on the 21st of October. Which just happened to be the first day of the World Series that our Royals were playing in. A series they had not played in since 1985, the year I was born, but I digress.

I knew immediately the connection to Max was different. I loved him but I longed for Charlotte. I didn't want to be left alone in a room with him. My heart hurt because I didn't understand what was going on. I was proud but also incredibly confused. He looked so much like Neal, he didn't feel like he was mine. I had a very hard time breast feeding and had very rude pushy nurses. I really wanted to go home. I thought if I can just go home and see Lottie, I will feel normal, this will all feel normal. I begged my nurses and doctor to let us go home early even though my blood pressure was high. They reluctantly let us go.

When I got home the depression and anxiety worsened. I had felt this with Charlotte but not near as severe. I felt I was drowning in pain and trapped in a life I couldn't get out of. I was pumping at the time and would have to spend 45 minutes in my room every 3 hours by myself, thinking about what a monumental mistake I had made for my whole family. I had 2 beautiful children and I could not figure out how I was possibly going to take care of them.

I spent days crying. Not crying, sobbing. All I wanted was Charlotte. She was the only person I felt bonded to. I feel incredibly guiltily about that now but I also understand the powerful beast that is postpartum depression. Everyone would ask me if I wanted to hurt myself. I would say "no." Which was true. I really wanted to get in a car with Charlotte and drive away. I finally called my doctor who made me come in immediately, did I mention she is AWESOME! She hugged me as soon as she saw me. She said "with everything you have going on, I would be shocked if I didn't see a little of this with you." She also told me something would have to give, we decided it would be pumping so that I could get on a strong anti-anxiety medicine. I cried about the plan but I knew I needed to be a healthy mommy to both of my babies. 

Also during this time my sister became my hero and essentially became our night nurse. She stayed 5 nights a week and would take the night shift with Max so that Neal and I could get a full night of sleep. Neal would take the weekends. My parents also stepped in and helped a lot. Because of all of this I was able to keep up with Charlotte's therapies and all of their appointments and also bond with both of them during the day.

It took a few months for my hormones to balance out and for me to see clearly. But once the fog cleared, I realized that Max was the best addition to the family, an idea that my limited, anxious mind could not come up with on its own. Now that it is clear to me I see something bigger. I see our comedian, our rambunctious little boy, our dare devil, our mama's boy, our little flirt, and most importantly Charlotte's  best friend. 

I spent so much time worrying about all the attention he would take from her. I worried that he would stunt her growth and that our love for her would shrink. I worried he would irritate her or vice versa. But wow, it's the opposite. Since day one, Charlotte has adored Max. She laughs every time he is near her. She would rather be with him then anyone else in the world. As he has grown and started to do new things Charlotte has started attempting to do them too. He started crawling about 5 months ago and she has been intently watching him and she just recently started crawling. He babbles and she tries to babble back at him. And I know as they grow the they will continue to teach each other.

 And as for our love as parents, it has no bounds. They delight us every single day and now we can't imagine what life was like before  they were here. 

The Upset in My Plans Part 1

Most people that know me, know that I am not a huge fan of change. I don't like surprises and I love researching and planning ahead. In full discretion I was even told once in a job review that I lacked flexibility. So naturally, I have always had a plan for my life.

My sister loves quoting John Lennon when he said "life is what happens when you are busy making other plans." As much as that quote makes me crazy, it is pretty accurate and has proved true more than once in my life. I had always planned on being married by 22, I got married at 24. I planned on graduating college and becoming a kindergarten teacher, I finished a lot of college but never got my degree but was lucky enough to teach preschool. I had planned on having 3-5 children all 3 years apart some biological and some adopted. 3 girls and 2 boys. Hahahahah. Although part of this plan is still possible although my husband would say "no way!" One part is not, the 3 years apart.

Let's go back in time. First I have to say, neither of our children were exactly planned. Charlotte came during the most stressful year of our lives but quickly turned it all around. More on that another day. This is about our number two, our spirited Max. On November 1st, 2013 at Charlotte's 4 month checkup, her doctors told us something was wrong. Our baby was going to have problems, probably life long problems. The months that followed we didn't know (we still don't know) if what she has is genetic. So we made the decision to hold off on another baby for awhile. Which was fine with me, 3 year plan and all. 

Fast forward to spring, we sort of let our guard down a little. Sorry that's probably a little TMI. And yep, there was a small chance I was pregnant. We joked about how crazy it would be to be pregnant and have a 8 month old daughter with undiagnosed special needs and then we forgot about it again.

 Then one Sunday night, Neal and Charlotte went to a family dinner and I stayed behind because I wasn't feeling well. (Uhh duh) While he was gone I was bored and remembered there was a pregnancy test under the sink. Who does this when they are bored? I don't know?? But I did and yep two lines right away. Immediately fear rushed through my body, I had just been pregnant!!! How was this possible?! Charlotte was still a baby. This was the worst news ever! I called Neal and made him come home discreetly and immediately. 

It took a few months for me to warm to the idea of bringing another human being into our family. It was so unfair to Lottie. I would be splitting my love. I would be taking away her time and attention. She couldn't understand this. This totally sucked! Needless to say I was very depressed. 

Then we found out it was a boy. My heart softened a little. I felt as if the competition wouldn't be as thick. Maybe this would be ok. Maybe life could move foreward. 

To be continued...

The Loaded Question

We all know it. We all dread it. But we can all expect it. You see someone that you haven't seen in awhile. Maybe it's a friend of a friends or a friend of your parents. Maybe they have heard about your child through the grapevine but aren't around you all the time and they approach and say those four simple yet incredibly loaded words. How is your daughter? 

See, this would be an easy question if they asked "how are your children?" Then you could quickly answer "great" or "so much fun" or my favorite "growing up so fast." But these words are directed at your special needs child and you know it. You know that you can't get by with the standard answers, these people want more. They are caring and praying and they want to know. 

So if you are like me, your mind quickly tries to access a few things. Is this person a Facebook friend? If so, is it likely they read my posts? And if they read my posts, do they also read my blog? See, this matters, because I don't want to repeat information they already know but I also don't want to narcissistically assume they follow my life that closely. 

So generally I start with a response like "she's doing better, progressing slowly everyday" and I wait for a follow up. This is the tell. A lot of times the person responds with "I have been praying, but I'm not sure what is going on with her?" This means they are not reading my blog... No biggie... But it also means there is way too much to explain to someone I barely know. My typical response at this point is "the doctors say it is some sort of muscle disease, we are not sure the severity but she is continuing to progress so we are thrilled." It is amazing how easily those words roll off my tongue now. NOTHING about muscle disease thrills me but it seems to work in small talk about big subjects. 

If I get a response like "I heard she is being tested for this or that" then I know they have either read my blog or talked to someone who has. Then it's a whole other ballgame but my answer is still generally just as simple "we are still waiting" and then I add something cheerful like "but we are hopeful." That's the thing. When talking to acquaintances or friends of family, I think it is important to keep it cheerful. When talking to friends or family, I think that is when you can say how crappy things really seem. Also I like to say it to a bunch of randoms on the Internet in this blog. But if you see me in person I'll try to always be cheerful (wink.) 

The truth is I can not tell you in 5 minutes how my precious complicated mysterious  daughter is. I can give you half answers and fluffy hallmark answers. But if you want the truth, we will need a lot longer than 5 minutes and I will need you to get to know my Charlotte and love on her and watch her grow. I know people will continue to ask and I am ok with that. But maybe the better questions are: What new thing does Charlotte do? What is Charlotte's favorite song? How are Max and Charlotte getting along? Because sometimes I would like to talk to you about more than just her disease. And if you want to talk her disease maybe ask "what can I pray for" or "what do you guys need." That way I won't have to rack my brain of my child's entire medical history to decide what is relevant to share. 

All that being said, I do thank you for caring. I thank you for noticing. We are all in this learning together. And Charlotte is doing well, making great strides everyday!