A Utopian Community

The definition of utopia is a community or society possessing highly desirable or perfect qualities. We found our Utopia this weekend in a Best Western Plus in Bloomington, Minnesota at an MTM-CNM Family Conference. This community is loving, understanding, sympathetic, and exciting. While in this utopia, there are no stares, no one asking “what’s wrong with him,” and no looks of sadness or pity. Benjamin even noticed this the moment we arrived. He knew he was surrounded by people who look at him as Benjamin and not so much as the little boy on a vent. Benjamin smiled, danced, waved, and blew kisses from the start feeling the same type of comfort we felt with our MTM-CNM family. This community is full of people with “highly desirable or perfect qualities.” 🙂

Over the past year and a half, I have kept close contact with people from around the world because of one common interest, our children. Though we had never met in person, initial hugs and embraces felt comforting as if we had all met before. Being new to the community (Benjamin was the youngest to attend), many people had already met and made lifelong bonds, but we were welcomed with open arms and open hearts.

The first night, each family had to introduce themselves. Some parents came alone, some brought an army of nurses and siblings, and some came with an MTM-CNM angel sitting on their shoulders. We laughed, we cried, we bonded over similar stories, but enjoyed hearing about our differences.

This has been such a wonderful experience. Where else other than this Utopia can we suction Benjamin without worrying about the loudness of the equipment, grossing anyone out with excessive amounts of secretions and mucus, and feed Benjamin without stares? Where else do conversations about equipment, braces, decisions on bibs, and types of trachs actually seem exciting and productive? Where else do people understand the analogy between Benjamin and Moses? (Parting a crowd as fast as Moses parted the Red Sea)

In addition to the great connections we had with families, we also connected with the top researchers from multiple countries, learned about the future of treatments and a possible cure, and had Benjamin participate in a few studies. Though this is important and exciting, in no way can it compare to the excitement of meeting our extended family in this Utopia.

The last night was Talent night. Though these kiddos go through some very tough times, they have the best sense of humor. KC and I were so entertained and impressed with everyone’s abilities, it made me even more hopeful for Benjamin’s future. We are already planning our family’s talent for the next talent show. Watch out, Lennon and Isla will be with us, and they love a crowd. 🙂

Today, KC and I had to leave this Utopia early to get on the road. I was sad to miss the last day, but a part of me was a little glad to miss the sad goodbyes. I have never been very good at goodbyes, and I know that the “ugly cry” might have come out. This is not goodbye, this is a “see ya later.” We hope to have visitors in New Orleans soon.

To our MTM-CNM family, thank you for all your love, support, and knowledge. What you have accomplished as a team is amazing. See ya later! 🙂

20130728-195938.jpg

20130728-195955.jpg

20130728-200009.jpg

20130728-200101.jpg

20130728-200128.jpg

20130728-200135.jpg

20130728-200146.jpg

20130728-200205.jpg

20130728-200219.jpg

20130728-200226.jpg

20130728-200334.jpg

Advertisements

Drum Roll Please

Drum Roll Please……
Benjamin’s favorite food is ….
Cheetos! He didn’t waste an ounce of the Cheeto dust today in speech. Who can blame him?! He is not eating them yet, but I think we can all agree, the cheese is the best anyway. 🙂

20130716-215516.jpg
Drum Roll Please……
It has been a long 17 months of waiting for results of genetic testing. While in the NICU, Benjamin was diagnosed with Myotubular Myopathy after initial muscle biopsy and by presentation, but we needed genetic confirmation. After months and months of negative tests, we were running out of options. Somehow, one test was missed. When I realized it, I immediately asked for it to be run. Benjamin doesn’t look like a typical kid with this genetic mutation, but what about Benjamin is “typical.” 🙂

Four weeks ago, the genetic counselor called us to let us know that the test was not positive or negative, but that they needed to test KC and me for comparison. Yesterday, we received an email stating the results were in, and we needed to schedule an appointment to discuss them. Today at 1pm, our 17 month wait ended on Benjamin’s 17 month birthday. The genetic report for DNM2 came back indeterminate. Why indeterminate and not positive?! Well, to put in easy terms that I think I understand, the mutation that was noted is undocumented, but is located next to the documented cases, all with similar presentations. Because of his muscle biopsy, his presentation, and the location of the mutation, it is pretty clear that Benjamin has Autosomal Dominant DNM2 Centronuclear Myopathy.

Now, what does this mean? Well it doesn’t really change our plan of action. There are very few cases, especially of Benjamin’s severity, that we can use as guidance. To me, this means the sky is the limit.

Drum Roll Please…..
The lab also tested KC and I for the same gene mutation. And….. We are both NEGATIVE. This means the mutated gene was not passed from KC and me, was not passed to Lennon and Isla, and cannot be passed to another little one. For some reason, during initial development, something changed the makeup of this gene for Benjamin, and for Benjamin only.

How rare is it? Rare enough not to really know, but one study noted 19 different variations of the DNM2 gene found in 100 families. 100 documented families in the world!! Everyone thinks their child is “one in million,” but Benjamin wins out at “one in 70 million.” Maybe we should by a lottery ticket. 🙂

First Movie As A Family

Yesterday, we took Benjamin to his first movie. We haven’t taken him before for two reasons…1. We weren’t sure how he would handle it 2. Lennon thinks movies only come in 3D, and Benjamin is definitely not ready for that. One of the kids’ favorite movies (and ours) is Despicable Me, so what better movie to see first as a family of five than Despicable Me 2.

Benjamin loved it. As soon as the screen lit up and the lights dimmed, a smile emerged from his face. Between the smile and the occasional waving of his arms, I knew we would be doing this again and often.

I think I missed a good bit of it though, sitting with the Sat monitor in hand ready with my thumb on the silence button. I finally turned it off for everyone else’s sake and decided on just keeping an eye on his face, still missing a good part of the movie. No worries. I am sure I have many viewing opportunities in the future. 🙂

20130715-135633.jpg

20130715-135644.jpg

A “Grunchy” Friday

Waking up this morning to a bad smell in the dog kennel was only the beginning in a series of incidents that pretty much put me in a “grunchy” mood (as Isla says) for the rest of the day. Not such a great morning greeting after a sleepless night of “camping out” in the living room with the kiddos. After cleaning out the kennel outside in my pajamas and watching Isla gag to the smell, I sat scanning Facebook for the decisions of the Senators and Representatives on the possibility of a veto session. I was sadly disappointed that a majority of the Senate did not stand with children and adults with disabilities. It wasn’t for lack of trying. Senators have received letters and pictures almost daily from us, and unfortunately, we received very few responses in return.

Well, the day must move on for now so we loaded Benjamin in the car and went for therapy at Tulane. On our way home, I felt it was important for me to thank our Senator for supporting the veto session. We drove straight to his office, I took a breath, and stepped inside already fighting back tears. After hearing that the Senator wasn’t in his office, I lost it and cried to the secretaries trying to let them know that we wanted him to know how thankful we were for his support. I didn’t just tear up, it was the ugly cry. I definitely think they got the point even though they probably couldn’t understand what I was saying. Oh well, I tried.

We arrived back to the house for Benjamin’s next therapy, and I decided to check the mail. This is something I quit doing on a daily basis, because it was just too aggravating. Why I chose today, I wasn’t sure, but unfortunately I did. In the mail was a medical bill. After calling, they realized they didn’t even bill our secondary insurance, but they were sorry. WHY do I have to double check and make sure everyone is doing their job. It’s tough enough doing my own. Next was Medicaid. This is July and I am still fighting for payment of one of Benjamin’s shots from January. Ughhhh. Oh and by the way, our out of state pharmacy is out of network. Of course it is. By that afternoon, I was done. Maybe it was a lack of sleep, maybe it was built up frustration, maybe it was the stress of funding the park, maybe it was the stomach ulcer that started Monday, but I was over it.

Luckily, KC knew just what we needed…a nice family dinner out. The entire way to dinner I prayed. I prayed to let everything go. I imagined myself writing on a paper every thing that is a stress right now, and then I wrinkled it up and threw it to God to handle. I know it sounds silly, but it worked. I was able to enjoy dinner, enjoy the kids, enjoy time with KC, and I was able to put everything else behind us…at least for the moment.

Today I am counting my blessings, and enjoying my family time. We took a trip to Nicholl’s to watch the college athletes at the Manning Football Camp. Benjamin loved it. It was obvious by each wave he gave each receiver that passed by him. This house is sooo ready for some football.

Though I may not be dwelling on the stresses in my life today, I am still working to resolve all of them. When you can’t change the minds of those in power, start on the playground with the youth who will someday be making all the decisions. So for now, my focus will be on the park, and hopefully this will help mold our children’s minds for better choices in the future. WE PLAY AS ONE!

20130713-215343.jpg

20130713-215350.jpg

20130713-215403.jpg

20130713-215415.jpg

Curveballs

Just when I think I can’t possibly have anything important to share, BAM! the world throws us a few curve balls. Sometimes I get so tired of fighting for my children and for what is right, but I know it is something we all have to do.

The first bad news happened when Governor Jindal cut the funding in the budget for people with disabilities. This is something we have worked so hard for. We hauled Benjamin up the steps of the capital for a rally, drove back to Baton Rouge with Benjamin in tow to speak to the Senate appropriations committee, hunted down an obviously uncomfortable Representative begging him for his support, and wrote many emails and letters to our public officials. All of this is very out of my “non-confrontational comfort zone,” but we all do what we have to do for our children. In hopes of having enough Representatives and Senators to support a Veto session, the Senators who are unsure of their stance have received a daily picture and message from Benjamin. 🙂 Unfortunately, it is not sounding very promising that they will have enough votes for a veto session, but I want them to know who we are and who we fight for.

Tonight, we received another curve ball. (Pun intended) I have been wanting to go to a Zephyrs baseball game for a while, and what better time than the Fourth of July with fireworks. The kids were so excited…more about the fireworks and less about baseball. While I unloaded the children, KC went to purchase tickets. KC asked for two adults, two kids, and one child under two. (Children under two get in free). The guy at the ticket office charged him for three children and two adult tickets. KC reminded him that one was under two, but the guy said we had to pay for the space for the wheelchair. KC said, “So children under two are free, right, unless you are in a wheelchair.” Studdering, he replied, “Only children who can sit in your lap, you have to pay for the space for the chair.” Well we weren’t really given the option, Benjamin could have easily sat in my lap, but we still have to pay for a space for the chair. I am not looking for Benjamin to get in free wherever he goes, but if the policy states that children under two get in free, then children under two should get in free. Whether he sat in my lap or not, he doesn’t take a seat. Instead, we pulled right up to the rail behind the seats. When Benjamin turns two, I will happily pay the $11 dollars, but for now, he is under two, can sit in my lap, but must pay $11 to place his chair at the rail behind the seats.

This morning I contacted the VP of sales at the Zephyrs Organization. He was definitely expecting my call, and he mentioned all the letters and messages he received. (I am amazed and thankful for all the support) He was very empathetic and apologetic, willing to make this right. He was definitely not making any excuses, but he did explain that the rule states that the child has to sit in a lap (this is the rule the guy at the window was following, and apparently has problems thinking outside the box). I explained that I would have happily held Benjamin during the game, but was not given the option. He asked if there was anything he could do. I replied that I didn’t want free tickets or a refund, I want to make sure this doesn’t happen again. I explained that parents with children with disabilities fight on a daily basis for their children. All we wanted was a night at the ballpark with the whole family, and I explained finding places to be able to bring the entire family can be difficult.

Yes, it gets exhausting constantly being ready to defend my children, but considering yesterday was the Fourth of July, I have to remember that we are not the only ones in a fight. We all fight for freedom, rights, safety, health, life, family, and the list continues… We were never promised that life would be easy, but if you can make it through our time here on Earth, we are promised eternity. Our time here in this fight is so brief compared to what we have to come. So back to the war we go, preparing for our next battle. 🙂 A cousin sent me a message this morning with a saying that has been passed through our family. “Don’t worry about the mules, just load the wagon.” Well said, and our purpose continues.

I want to thank everyone who showed such awesome support for us during these times. It is so nice knowing that we don’t go to battle alone.

20130705-104456.jpg

20130705-104503.jpg

20130705-104515.jpg

20130705-104508.jpg

20130705-104629.jpg

20130705-104637.jpg