Sing a Song...(by Michael)

Ella is a very social girl. She loves spending time with family and friends. She loves to go to school events and she always adores her classmates.

The Fall promises that school will begin. Ella will be in 4th Grade. Many of her friends have extra-curricular activities that teach them skills, teamwork, and perseverance, as well as serving to socialize them. Ella can't join physically demanding sports because of her SMA, but there is one thing she can do---sing!

She often sings songs while she plays and many times the house is full of her voice. She received a karaoke machine for her birthday in June of this year (2019). Using an app on her iPad, which is paired with the karaoke machine, she picks music that she knows and the lyrics appear on her iPad. She sings along with the tune demonstrating confidence and vigor. Several times she has brought family members to tears with her beautiful voice.

Ella auditioned for the Young Naperville Singers (YNS), that will begin in the Fall, and made the "high" group of singers. She'll be a part of a group of kids singing their hearts out. Undoubtedly, she will make new friends while honing her singing skills.

In order to perform for an audience, all of the YNS members are required to wear matching outfits provided by YNS. Ella and I took a trip to the main office of YNS and did a dress fitting.  We found the dress size that fits her and it will be here soon.

This new endeavor will be a great experience for Ella. She'll have an extra-curricular activity like many of her peers and siblings have. She'll be able to make friends and do what she loves to do---sing! 

Ella being fitted for her YNS dress (July, 2019)

Hard to See the Light...(by Michael)

The only sound in the house is the washing machine doing its work. The kids are off at camp and Lindsay is in the hospital. The dogs follow me around the house wherever I go--they know something's up. When I ask them where Ava, Henry, Ella and mommy are, they tilts their heads and look toward the front door.

Lindsay's kidney surgery went well. They removed the tumor and 5% of her kidney. The recovery, however, has been very rough for her. When we met with the surgeon a few weeks ago he said he would make five small incisions in her abdomen. Right before surgery (in pre-op) they told her it'll feel like five stab wounds. She wasn't expecting it to hurt as much as it does. It hurts her to talk, laugh, or move. She is being discharged today (Wednesday, July 10) and will complete her recovery at home. She has a hard time getting in and out of bed as she must use her core to do so---and it is very sore and painful. I went to IKEA and, using donation money, purchased an electric reclining chair for her to use. This will help her get from a lying position to a sitting position without having to use her core muscles.

I know there's a light at the end of the tunnel but sometimes it's hard to see it. Lindsay's been in pain for years now and it's difficult to watch her continue to be in that pain. We thought everything would get better after the amputation of her lower right leg but that's not the case. She recently had the surgery for her left knee (meniscus tear) and, since it's the only leg she has to use for walking, it is taking longer to heal and gives her much pain. On top of that, she's dealing with the core pain with every movement she makes from the recent kidney surgery.  And she now has one more surgery to go through, as an out-patient procedure, to address the abnormal cells and tumor in her uterus.

I had the house to myself for two days and used the time to patch some holes in the walls, mow the lawn, and do a little power washing of the exterior of the house. Anything to keep things off my mind for a bit. But, of course, reality still sits there staring me in the face. I know what I have to do...take care of my family and make sure everyone's as healthy as they can be. 

The kids will be home from camp over the weekend and the house will once again return to its crazy self. There won't be a shortage of things to do on my part. Hopefully, by the end of the summer, we'll have all of this behind us and we can then move forward heading into Fall.

Potter and Ginny waiting for their mama!

Funny Spirit...(by Michael)

Everyone in the house had a red face. Energy levels were down and the heat was becoming unbearable. Our air conditioner stopped working days ago and the house was easily 85-90 degrees. We called the heating and cooling company recommended by our neighbor and they assessed the situation. As it turns out, we need a new central air conditioner and a furnace. They were kind enough to supply us with two portable air conditioners to help keep us cool. The first one is in the kitchen eating area and the second one is in the master bedroom. Ella sleeps in the master bedroom and Ava and Henry sleep on the first floor. We purchased the new equipment and will be paying for it in monthly installments over the next ten years. Installation is set for Saturday, July 6th.

Lindsay's second surgery of the summer (second out of three) is scheduled for Monday, July 8th. The kids will be at their respective camps that week so she'll have some quiet time as she recovers.  Lindsay will have the cancerous tumor (on her kidney) and 5% of her kidney removed. In August, she will have a third surgery to remove abnormal cells in her uterus and a growth that was found there as well.

We have run into some insurance problems with regards to approving the microprocessor foot for Lindsay. This piece of equipment is considered to be experimental and the insurance company denied it automatically. We are fighting this decision based on the following needs:

• Lindsay is young (38 years old); she has a lifetime ahead of her without a lower right leg.
• She has three active children under the age of 12.
• She has a daughter with SMA. This requires Lindsay to carry her, lift her, etc--and without the microprocessor foot, it will be very dangerous to do so, leaving complete care of Ella to Michael.
• She has a degenerating disc in her lower back. She has to use her legs to lift anything, including Ella, so as not to aggravate that disc; the microprocessor foot would be ideal for these motions.
• She's had four meniscus tears in the other leg's knee due to compensation for pain. She needs the microprocessor foot which will learn her gait, and in turn, will get her back to walking as she naturally would.
• She has a very active job directing the children's ministry programs at church.

We're hoping that the insurance company will see the need for Lindsay to obtain the microprocessor foot.

The kids have been acting out in response to all the stress in the house. They are fighting, bickering, and annoying each other above and beyond the normal sibling rivalry. The added heat in the house fuels the short tempers and they have been lashing out. We sat with them and had a family meeting. We had them list the positives and negatives about their life, right now, on sticky notes. We reviewed the negatives first and made a master list of repeated ideas. We talked about how each of us could help the others with the negatives to quell them. This is what they came up with:

• More parent one-on-one time with each of them.
• Respecting each other.
• Asking if behaviors and actions are "helpful" or "hurtful" right at the time of occurrence.
• Communicating positively (responding, not reacting).

We then went over our positives and had a good time talking about what makes us happy, comfortable, and respected. From there we listed (on sticky notes) one thing we each wanted to work on for the next week to help create a supportive family dynamic. We placed the "goal" sticky notes on the mantle so we would see them everyday. During our next family meeting, we'll review our mantle sticky notes and adjust accordingly.

Ella woke up at her usual time yesterday morning and was eager to get ready for the day. I rolled out of bed and took a shower while she played with the dogs on the bed. I took her into her room and dressed her and brought her downstairs. While administering her morning meds via her g-tube she looked at me and asked, "Where's your funny spirit?" I turned my head a bit as a dog does when they are curious and gave a little laugh. She smiled at me and I tickled her on her stomach.

Sometimes it takes the thoughts of a child to realize the complexities of life and how to deal with them. There's so much going on at our house and much of it causes stress and anxiety. Each one of us is dealing with the heat, the messes around the house, the needs and wants of others, as well as trying to make oneself happy. We're trying to get ready for surgeries, camps, birthdays (Ella's was June 10th and Ava's is July 5th), play dates, sleepovers, etc. 

I thought about what Ella had asked me and realized that a "funny spirit" can make all the difference in the world when dealing with so many obstacles. I think I'll add to my sticky note on the mantle..."have a funny spirit".

"Where's your funny spirit?" (July, 2019)