Scattered Showers With A Chance of SUNSHINE

I always try to write during moments of clarity, and I try to avoid writing in the middle of the “storm.” Sometimes the “storm” lasts a little longer than expected, and though it may be very tempting to spill all my emotions here, I try to wait until the “storm” passes, so I don’t worry my family of my mental and emotional well being. 🙂 I have endured a few “storms” in the past year, but who hasn’t. It is all relative to our life and our experiences. I have learned it is not how severe the storm is or how often they pass, but how well you are able to adjust yourself to maintain standing.

I wouldn’t say the past week has been a “storm.” Maybe, the past week has been more comparable to scattered showers. These few weeks have been filled with a few set backs, but with moments of SUNSHINE peeking through.

The scattered showers all started with Benjamin’s collapsable lung. This is something we fight frequently, but this time, the collapsable lung is a little more … collapsable. Just when I see the sun peeking through, another shower follows and the lung closes again. If this is all I had to endure, it would be a piece of cake. Unfortunately, life takes me away from doing the important and fun things for Benjamin, Lennon, and Isla, and the showers begin.

I try to stay on top of our paperwork and medical bills, so I made a call to Medicaid about some paperwork we have yet to receive. After multiple curious questions and many moments of silence, the woman told me that Benjamin was listed as a “surviving dependent.” I told her he is definitely my dependent, but she quickly replied, “well, you’re not dead are you?” Interesting, so now I am listed at dead. She said she will have to get back to me on this one… I am sure she will. We will have to see how this turns out since it has been a week and no reply.

Next, our DME company called to let us know that our insurance pays around $20 for an $130 trach. We currently receive four a month, and change them weekly, but the DME company mentioned that some people change them every other month. Well, we will not be changing them every other month. It was also mentioned that maybe there is a cheeper trach. Are we really looking to skimp on something that keeps my son alive? Oh my.

Benjamin started speech again this week at Tulane after being off a few weeks due to illness and his therapist being out for family issues. It is obvious how much Benjamin benefits from Speech and Vital Stim, because he really regresses when he is off. He is swallowing and vocalizing less in and out of his sessions. Benjamin did lick on a few pretzels and loved the salt. He had a much better reaction to this than to sweeter food items. (Isla was also at therapy and was treated to quite a few pretzels.) On a really good note, Benjamin has started signing this week. We consider this his first word. With almost 100% accuracy, Benjamin signs “more” when he wants to continue an activity and signs a modified “all done” when he is over it. It is hard to accept, but I know that vocalizing words and sentences may not be Benjamin’s primary mode of communication. Though this can be disappointing, knowing that he will be able to communicate by signing or by using a communication board is wonderful. SUNSHINE. We will soon be starting the process for Benjamin to be assessed for appropriate communication devices.

In OT, we placed Benjamin on his hands and knees in a crawling position. His head needs full support, but when I would try to lower it, he would push briefly through his arms. (Ignore his hair in the picture) I know Benjamin will not be able to maintain this position on his own, but seeing this little push through his arms was awesome. SUNSHINE. We have also been playing ball, Benjamin is able to kick the ball when it is placed by his foot, and he will push the ball off his lap with his hands. He loves this and smiles so big. Lennon and Isla do a great job of playing ball with him. SUNSHINE.

Next, we lost our main nurse a few weeks ago, and have started with a new one. I am very careful about making sure they are 100% prepared before I leave them, so I have been tied to the house. I love staying home with Benjamin, but being unable to leave him makes taking the girls to school and getting to the grocery store very difficult. I am getting better, but throwing Benjamin in the car to make a quick trip can be a little frustrating and tiring. There is no such thing as a quick trip. My plan after Easter is to get everything together in time to get Benjamin’s morning routine completed, girls dressed and packed for school, and in the car ready for school and Mass by 8:00. I need a challenge and this will be one. I like to be independent so depending on others gets very frustrating. I just need to know I can do it on my own.

Lastly, in the back of my mind is knowing KC leaves after Easter for Baton Rouge for three months. He will be in Baton Rouge for a total of 9 months (in three month intervals) until next July. Even though I have great support from my friends and family, this is an overwhelming thought. I am not only going to miss the extra help, I am going to miss my best friend. I hope this year flies by, as we are finally closing in on KC finishing his residency. I couldn’t be prouder. SUNSHINE

I know I can sound deliriously optimistic at times, but I don’t every want to give people a false image of myself. I know for myself, reading other books and articles by deliriously optimistic people, made me feel inadequate. I felt as though I was missing something whether it was clarity, spirituality, prayer, or sometimes I wondered if they were on an artificial substance. It took me some time to realize that an optimistic person isn’t always optimistic. An optimistic person is able in time to let the positives outweigh the negatives. Optimistic self-help books are never written during “the storm.” These books are written after the storm during the SUNSHINE. Optimistic people are capable of seeing the SUNSHINE and this is where I feel I am. I try not to dwell on the overwhelming moments where I find myself having a Mommy Timeout outside, driving around tears (only time I am alone), or down to the point where I don’t even want to clean my house. I am human and these moments happen for me…for all of us. Optimism isn’t seeing a glass half-full instead of half-empty…optimism is being able to fill that glass back up. I look at optimism more of a verb than an adjective.

I was mentioning to a friend about a day that I removed every piece of baby equipment from my house. Benjamin’s posture was too poor for a baby swing, he was unable to hold his head to use an exer-saucer, and had too little control anywhere for a bumbo seat. On this day, in a moment of weakness and frustration, I ditched it all. She said she felt better knowing I was human and not always optimistic. 🙂 Though I was very flattered, I never want to give the idea that I am always smiling like a jack-o-lantern. That is what made me feel inadequate reading other books and articles. I have my moments like we all do, I just prefer to focus on the SUNSHINE.

On a funny side note…As I am writing this, Lennon and Isla are in time-out in their room for fighting. After a few minutes in there, I hear their radio turn on…to Cuban rap music. You just have to laugh. At least they can’t pick up anything bad from music they can’t even understand.



If You Pray Don’t Worry

I would compare the past few weeks to a roller coaster. Benjamin has had his ups and downs with his left lung, we have had a few awesome family events, and we have had quite a change in nursing. Once again, I was reminded not to worry. 🙂

A little over two weeks ago, Benjamin started to act as though he didn’t feel his best. We are completely accustomed to the occasional lung collapse and can manage it at home, but this time it is a little different. After multiple ups and downs and frequently thinking we had beaten it, I took him in to the doctor Tuesday. Of course, the lung is closed (not surprised), but what to do about it? For now, we are trying an antibiotic, and we return to the doctor Monday. If the lung is not open, then Benjamin will be admitted and he will have another bronchoscope. My biggest fear is that there is nothing more they can do for that lung. When it is down, Benjamin only has brief periods of energy, and he sleeps much more. Between floppy tubes to the lungs and mucus plugs, the left lung is a little challenging. Yesterday, I thought we were once again getting over it, but last night we were up again doing CPT trying to open the lung and lower his heart rate.

Between visits with the pulmonologist, he went ahead and set us up with a cardiologist. Benjamin had an echocardiogram and an EKG between visits with Dr. White. While watching Benjamin get his echo, I yawned a few times. The girl commented on how tired I must be especially after finding out I had a 3 and 4 year old. My mother-in-law talked a little bit about our routines, but I made sure to reassure both of them that we were doing great. We take it a moment at a time and no need to worry. The tech said her mom tells her, “If you pray don’t worry, if you worry don’t pray.” AMEN.

It was good news from the cardiologist…Cardiac output is great, as well as, sinus rhythm. Benjamin still has a small hole between the top two chambers of his heart, but at this time it is not affecting the function of his heart so we will leave it be for now…If you pray don’t worry, if you worry don’t pray.

Benjamin also lost his main nurse last week. She had been with him 40 hours a week since he was discharged from the NICU. We were sad to see her go, but her life took her in a different direction. This week we are starting with new nursing. As you can imagine, leaving Benjamin with someone new is out of the question. I warned them that it will take me a while to leave him, and don’t take it personally. I am so afraid initially that if something happens and I’m not there, that I will hate myself forever. I make sure that I feel as though the nurses are prepared for anything. If you think it is hard to drop your kid off at daycare the first time, try to leave your child who is supported by electricity and requires constant medical care. Sheesh…it gives me anxiety just typing but… if you pray don’t worry, if you worry don’t pray.

Please keep Benjamin and his “wimpy” left lung in your prayers. 🙂


MDA Muscle Walk and Eskimo Kisses

Saturday, our team of 41 walkers raised $2,311 for MDA at the 2013 MDA Muscle Walk. Team Miracles to MILEStones second lined around Zephyrs field in honor of Benjamin and his buddy Jackson. We were happy to help support the MDA since MDA helps fund research for Myotubular Myopathy, as well as, provides support locally to families. MDA was able to connect us with the Good Life Foundation to help transform our van.

The day could not have been more beautiful. Everyone had a wonderful time, except poor Isla whenever anyone in a costume came by, and there were a lot of them. We were surrounded by adorable children of all abilities and extremely supportive family and friends. To top the day off, Benjamin learned to shake his head “no” to be able to give eskimo kisses to his Daddy. A friend of ours reached down to tickle Benjamin, and he shook his head “no.” Loved it!

Thanks to everyone who donated money and a special thank you to all those who woke up on a Saturday to spend the morning with us. It takes a village, and I am so proud of the village that supports us. 🙂








The Good Fight

For Lent, I gave up my usual… cookies, cakes, and desserts, but I also started going to daily Mass. I felt like I could use some time for prayer, reflection, and a little peace and quiet. 🙂 Each morning, I feel as though the message is written just for me, but maybe, just maybe, I work the message into my daily life. 🙂 This morning, once again, something stuck. Romans 8:28, “All things work for good for those who love God.” The closeness that I now feel with God, came from a place where I felt lonely, depressed, and desperate. He brought me out and showed me the blessings that we all have. It’s unfortunate that it takes a rough road to put us back on the path, but I think sometimes we must experience this to acknowledge and except the gifts we have been given.

Another mom blogged that the path of a family with a child with medically fragile needs is at times, rough, lonely, and hard to maneuver. She also wrote that we must travel so slowly down this rough road that we are able to see the beautiful things around us…the sun, the birds, the trees. Even though at times I feel like this road parallels a roller coaster where you must feel the extreme lows to experience the extreme highs, our road has slowed me down allowing me to experience things I took advantage of before. We must not forget that we are never alone, even though we may feel lonely during our rough and low times, and we must patiently wait for the new day.

The meditation for Mass today ended with this prayer…”Father, I surrender my life into your hands. When I get weary of fighting the good fight, lift me up and hide me in your presence. Keep me safe until I am able to praise and thank you once again.”

I really find comfort in “hiding in his presence” during the tough times, waiting for the joyful times. We are so blessed to have had so many joyful moments lately, but the message today helps to prepare me for any rough roads we may have in the future.

Benjamin’s Big Boy Bed

For the past two months, Benjamin has slept on a bed on the couch. Since his last hospital discharge, I have spent at least some, if not all, of the night on the couch next to him. Even though I am a very hard sleeper, I can tell any change in Benjamin’s breathing much quicker than his alarms will sound.

This week I decided it was time for Benjamin to move back into his room. (and me back into my bed full time) I ordered big boy sheets for a full bed and took down the baby crib. It wasn’t until I started to dismantle the bed that I realized this is the first time our house will not have a crib since before Lennon was born. Lennon, Isla, and Benjamin are close enough together where we kicked one kid out of the crib to move in another. This move brings such mixed emotions. I am so happy that Benjamin is healthy enough and old enough for us to be able to progress to a big boy bed, but on the other hand, taking the crib down is a tough reminder that KC and I may not be having any more children. When we decided to have children, we knew we wanted a large family. It almost feels selfish of me to be sad about this since we have three beautiful children, but know one wants to hear that it might not be a good idea to try for any more. Since Benjamin’s affected gene hasn’t been located by genetic testing (only by muscle biopsy), I am unable to start testing to see if I am a carrier; therefore, we are not sure of the chance of reoccurrence.

For now, I will look at this moment as an awesome and miraculous change. I will give thanks for my three beautiful and amazing children, and thank God that they are all still with me. Our new problem will be keeping Lennon and Isla out of Benjamin’s bed at night. They are truly the best big sisters a little brother could ever ask for, we just have to keep an eye on them for lving him TOO much.