Wednesday, May 30, 2012

May Update

Hello friends! I have so much to update you on! May has been a whirlwind of a month. We have had several celebrations and appointments keeping us all very busy. Mom recently went for a day of testing to see if she qualifies for the Diaphragm Pacing System. This is a fascinating new trial and the day was long, full of extensive education and research methods. I'll write a post outlining the entire day, results, and what's next for her journey. It's a lot to take in and sort through so I want to make sure I have the time to gather all of the info so I can explain it correctly. For now- enjoy the picture summary below of the past month!

College Graduation 2012
Memorial Day- Mom swimming with Ryan
Ryan's first baseball game!
Mother's Day 2012

Thursday, May 3, 2012

Progress Report

Waiting in the Doctor's Office

If there was one theme that covered this month’s progression appointment it would be stress. Just coordinating the day, schedules and prepping emotions leaves you frazzled and at times clouds your judgment. It seems lately that our family has just been attacked from all sides. There has been a great deal of change with my dad’s job, huge strains on personal relationships and just an enormous amount of frustration.  When you combine it all with the unknowns of ALS it becomes a volcano just waiting to erupt.

I am so grateful for family who sticks with you and offers support in time of need. My sister in law Shannon kept Ryan with her all day for a play date. Knowing Ryan was in such good hands gave me the peace I needed and the strength to focus completely on my mom. Dad is overwhelmed and didn’t attend the appointment. Quite honestly, I completely understand. I think hearing the summary from me and the extra time it allows to process everything helps make it seem bearable. The bond that we have all formed is incredible and although it’s a great burden to carry, to relay the information, and teach him about medical terminology and research it’s one I take with great honor.

Unlike the previous progression appointment mom went in with a few concerns. They all seemed to range in severity but I think she found great satisfaction in having herself heard. She wrote of issues we have experienced with the home care company APRIA. This is nothing new as they have been a nightmare to work with from the beginning. Unfortunately, all of mom’s supplemental feeding supplies as well as Bi Pap supplies come to us from here. Thankfully, we are now in the process of switching over to a new home care company. The hope is that she will receive better customer service and care.

In addition to housekeeping concerns she was very anxious about the “paralysis” in her face. As the doctor examined her it was clear that he was concerned at the severity of it. After asking several questions regarding time frame he told us with great care that he was concerned enough at the progress that additional testing would be required. Much to our surprise we were told that it is extremely uncommon for an ALS patient to have asymmetrical “paralysis” in the face and especially at this point in her ALS journey. He told us that it is most common to see symmetrical paralysis… that by looking at the person you would never know unless you were specifically looking for signs of weakness. Though statistics tell us that possibly 1% of ALS patients will experience the type of “paralysis” mom has its rare and her doctor has never really seen her type of case before. So- all that to say that he has ordered an MRI of the brain to rule out a brain tumor. It’s possible that what mom is experiencing is a completely unrelated issue.

We went in thinking this was just another piece of the ALS puzzle. What we were told was unexpected and came as a bit of a shock. But in all reality- we were more numb than anything. After all that we have dealt with thus far nothing seems to phase us like it used to. I can’t sit here and tell you that my mind wasn’t instantly flooded with thoughts of hope that maybe mom really doesn’t have ALS. For that split second I let myself begin to hope for something else. And yet, in just a split second I pushed that thought so far out of my mind. I can’t allow myself to go there. The realism in my personality refuses to allow myself to think that this has just been one bad nightmare.

The worst part of summarizing this appointment to the rest of my family has been that each one asked exactly what I thought. To hear my dad say: “So, she might not have ALS?” To hear my brother say: “you never know Tara” and to then have to tell them no. To explain that yes, mom does have ALS and this doesn’t change things… to watch those tears fall down my dad’s face… it’s the most heart-wrenching experience. I am so incredibly grateful that God has given me strength and grace to stand and hold us all together. That I can gracefully break the news, explain the situation, offer hope, be the physical strength for each one of them. I can’t explain the strength and peace that washes over me in each of these situations other than to say that it’s not me doing it. That strength completely comes from God and I’m so grateful that I can be the vessel he is choosing to work in to send peace and hope to my family. I cry and I feel pain, don’t get me wrong… but to have the strength to cry later- to feel the pain as I drive myself home is a blessing to the rest of them.

Mom’s stats have been hovering around the same as her last appt. Her breathing levels dipped from 51% to 43%. We are on the waiting list for the Diaphragm pacing clinic… at that appointment testing will be conducted to see if she is a candidate for the diaphragm pacer. She gained 2lbs- and the strength in her arms and legs has stayed steady.

Thank you all for continuing on this journey with us. As always, thank you for the prayers, cards, texts and support!

Wednesday, May 2, 2012


It was an average day at work. I had spent the morning laughing with co-workers trying to stay motivated enough to make it through the last half of the day when I noticed my phone was vibrating. I looked down and in a split second I panicked. As I answered the phone I could hear my mom breathing rapidly and with the raspy sound of her voice I heard my name.  As I desperately tried to figure out what was wrong I was overtaken with the most intense sense of panic. The rush of adrenaline that seeped into every ounce of my being was overwhelming. All I knew to do was to run…literally run. As I raced to the stairs on the opposite end of the floor all I could do was pray. Pray that whatever it was- she would have the strength in her voice to communicate it. I stood outside longing for the thick hot air to stop suffocating me. With each moment of silence the panic became greater and as she struggled on the other end to speak to me I could feel her frustration. Knowing that Ryan was with her and she was alone, I did the only thing I knew to do… I told her I was coming home. I drove with intensity in an effort to hold it together and be strong for whatever situation I was getting ready to walk in to. As I rushed in the house I saw her standing in the kitchen, my dad was holding Ryan and standing beside her. My dad instantly said: “it’s ok, she’s ok. Ryan is sick”.  An enormous amount of peace and relief came rushing over me and then it happened… the floodgates to my emotions opened and I lost it.  As I stood frozen in their living room I realized that this is my new reality. That nothing is simple anymore. That a phone call from my mom means something is wrong… that I will never experience the beauty of a solid conversation with her again. Realizing the effect of this situation my mom began to cry. She just looked at me and all I could say was: “I was so scared mom, I was so scared.” My dad trying to make things better continued to say: “it’s ok Tara”. I couldn’t accept it. It’s not ok… and I made that clear. This situation- this new normal- this new life- the panic and fear I was feeling isn’t ok. I needed to stand there and cry and voice it. Honestly, it sucks.

Sometimes, I think these situations need to happen. It’s healthy to recognize that life is hard and it’s ok to have those days. I don’t dwell on them and for the most part I am adjusting to this new life we are all living.  At the same time, I can’t help but mourn what we are losing. Communication is such an art and all too often I think it’s taken for granted. I miss her voice. I miss the deep laughter that would consume us… sometimes so much that it would irritate my dad. He used to tell us we needed to knock it off before one of us got sick and then we would just laugh harder. We are truly blessed to still have moments together as a family. As difficult as it was to be on the receiving end of that phone call- I am forever grateful. With each situation of panic and fear we learn to love deeper and to hold each other stronger.