I've sat down to write a blog several times in the past few days. Like everything else in my life, it too, has become more difficult.
It’s like I am running in slow motion while everyone and everything around me is going at high speeds. Each time I think that I feel ok I get blind-sided by the awfulness of SMA. It’s hard to describe but it’s like a wave flooding my mind, weighing it down and drowning out every other aspect of life. The life I lead and must face in the future seems blurry, water-logged, and out of focus. Nothing seems real anymore.
When we first learned of Ella’s disease, we made a promise to one another, Lindsay and I did. A promise to do everything we can to keep her alive until they find treatments and/or a cure. Each day that passes seems to grow longer and the tasks more difficult. Not only does the progression of SMA affect the physical well being of those who have it, the progression wears away at the family as well. It digs its claws into the fabric of everyday life and challenges us to move forward with the things we once took for granted as we raise our kids..
eating, drinking & playing with them,
toileting & bathing them
moving with them
cleaning with them and after them
driving them
watching TV with them
sleeping when we can
socializing with our friends/families
working
reading stories to them
dressing them, exercising with them, brushing their teeth
cooking for them
talking on the phone & e-mailing when we get the chance;
...to name just a few.
All of these things have now taken on a new meaning.
Doing these things now takes more time, patience, energy, and forethought. It’s draining. Do these things we must, and I can find no better reason to continue doing them than my family of Lindsay, Ava, Henry, & Ella. Each day I am drawn closer to them and wrapped more lovingly around them.
As I witness what SMA does to a person I also experience the deep, penetrating love for that same person.
I used to think it was hard to be a mom of three kids.
Let me rephrase that again.
I used to think it was hard to be a mom of three kids under age 5.
I need another crack at this.
I used to think it was hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a progressive neuromuscular disease.
Nope, still not quite right.
I used to think it was hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a terminal progressive neuromuscular disease, with no treatment or cure.
Ok, this is it, I promise…
It is so incredibly hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a terminal progressive neuromuscular disease, with no treatment or cure, and a broken arm.
There that's it. What I just mentioned above is so far beyond what I ever imagined "hard" to be.
And I wonder, will it EVER get easier?
Judging by the pattern so far, it has only gotten harder as time has gone by. Much harder.
Ella is getting bigger. It continues to be harder to carry and hold her. It continues to be harder for her to support herself.
Ella is getting older. It continues to get harder to entertain her mind, when her body won't cooperate.
Not one day goes by where I don't think, "I can't do this."
Every day I wonder if I'll be able to do this for the rest of my life, or at least, the rest of hers (and that thought makes me sick).
Is it ever going to stop getting harder? Will I ever get used to this??
The time of year has come when we sit in contemplation of all that surrounds us. The whirlwind of activity that has led to this day of Thanksgiving is by no means light. Our lives changed in the most unimaginable ways.
Over the past 5 years of our marriage we have built a family of five, cut our income in half by having Lindsay stay at home with the kids, lost a grandparent, a niece, a parent, a sister and two childhood friends, stood by a sibling with cancer, had two c-sections and one VBAC2, found a church that we love after years of searching, made new friends, started a business, travelled a bit, have called 911 three separate times, thrown a number of parties at our house, been a part of a sibling's wedding, baptized three children, and found comfort in one another.
We have also learned that our youngest child, Ella Sabine Casten, has a terminal disease. A disease that we had never heard of. A disease they call Spinal Muscular Atrophy (SMA) Type 2. We often wonder how we make it from one morning to the next. We often seek strength from a myriad of sources; enough strength to combat the spiritual, emotional and physical ransacking this disease inflicts upon us and our family. It's not one day at a time...it's not one hour, it's one moment at a time.
As easy it can be to look at the utter heartache this disease brings with it we have also sought the miracles of abundance that have followed in its wake...for the graces of love, companionship, and comfort we are forever thankful...
We are thankful for God, watching over us every minute of every day. With each passing moment, we grow closer to the understanding that He is the orchestrator of our lives; He is in control.
We are thankful for each other. Through the journey that we find ourselves we can always look to one another and truly know, understand, and feel what the other is going through. Without each other, we are lost in a world of confusion and turmoil.
We are thankful for Ava and Henry. They have shown, at their tender ages, that they are capable of providing comfort, compassion, and guidance to Ella. Not only do they look out for her in the most adorable ways, they still treat her simply as a "little sister"-teasing, fighting and everything that goes along with sibling rivalry--in this they bring a sense of normalcy to our house. They take our breath away each and every day in all they do with what they are given.
We are thankful for our families as they have stood strong with us; shouldered our cries for us; given their time to us; and poured out their love in so many ways...we rely on them so very much.
We are thankful for the strength that Ella has, despite her horrible disease.
We are thankful for Ella's adoring personality, tenderly touching everyone she meets with her love.
We are thankful for Ella's amazing team of doctors, nurses and therapists. Each time we are with them they provide us with the experience of never being rushed, always finding out exactly what we need, explaining things in ways that we can understand, and leaving us feeling well taken care of at the end of it all.
We are thankful for the researchers who are working so hard to find treatments and a cure for SMA.
Most of all, among everything else, we are thankful for you. Each and every one of you who reads Ella's story and sends your thoughts and prayers her way. There was one time that we, along with Ella, felt alone...it was when we realized, after her EMG, that she had SMA. We sat in the car, the three of us, as the world around us went forward---we went nowhere. We were alone, we were scared, and we were without hope. You have changed that. The love, compassion, generosity, thoughts and prayers have held us up, given us hope, and kept the loneliness at bay.
This morning I called the pediatrician's office to set up Ella's appointment with the Orthopedist. I spoke with our favorite nurse, Maggie (who rocks!), and she got Ella in to see the ortho this morning! The doctors at the ER figured we wouldn't be able to get in until next week, because of the holiday.
When I took Ella to the appointment, she was a rockstar :) She was being her normal outgoing self, saying "hi" to everyone she saw, in that sweet little voice that we all love (to people in the elevator, the receptionists, the nurses, the doctor, etc.).
When the Orthopedist saw her x-rays, he immediately confirmed the two fractures in her arm, the "buckle fractures." He said that with her being so young, her bones will heal very quickly and she will only need to wear her new cast for 3 weeks (as opposed to 6)!
We've never had a cast in the family before, so I wasn't sure how she would react to the technicians putting it on her. While I didn't think she would scream and cry, her reaction wasn't exactly what I expected...
I guess I never thought having a cast put on would be so much fun!
The reason the cast has to go all the way up her arm is to prevent it from falling off (since her arm/hand is so small). The positive of this is that she can't get her fingers to her mouth. The negative is that she can't reach the wheel of her wheelchair on that side, so if she goes in it, she'll pretty much go in circles.
She'll definitely need a lot of extra help over the next few weeks, but it could have been worse. So much worse.
To say that this past weekend was a rough one for us would be quite the understatement. I think I experienced the lowest low in my entire life. To be trying so hard to sort out all of our feelings about SMA and then have something like this happen was extremely difficult for us. I wasn't sure if I would ever get out of the "dark place" last night.
But going to the Orthopedist today and seeing how casual he was about the fractures really helped.
Our Squishy is ok.
God was watching over her on Friday night.
Sure, I'm still playing that dreadful scene over and over in my head, and probably will for some time. I don't think I'll ever forget the sound of her going down those stairs. And yes, I'm continuing to think of all the "what-ifs"...
Last night we faced one of the most terrifying moments of our lives.
Ava and Henry had gone down the basement to play and forgot to shut the door. Ella was in her wheelchair on the main floor with us. We had our eyes off of her for a brief moment and then we heard the thud-bump-thud-thud-thud. We knew exactly what had happened. She went down the stairs in her wheelchair.
She's ok.
We called 911 and she was taken to the ER. All of her neurological signs were completely normal.
She wasn't sucking her fingers and "charging" to comfort herself, which we thought was a little abnormal. The doctors noticed that she seemed to have some discomfort in her right arm.
Sure enough, she fractured the two bones in her forearm, just above her wrist. It's called a "buckle fracture", which is quite common among young children and pretty minor as far as breaks go… she won't need the bones to be set or have surgery, but she will need to be in a cast for 6 weeks. Right now she's in a temporary "half cast" to allow for any inflammation, but she'll need to see an orthopedist probably the week after next to get the regular cast.
The fear, the emotion, the utter sickness we felt last night (and probably will for some time) simply adds to our already fragile and heightened awareness of what we are dealing with each and every day. This is so hard on so many levels.
Quite honestly, we feel like the world's worst parents right now. We KNEW that if she ever went down those stairs in her chair it would be disastrous. We KNEW that we couldn't depend on Henry and Ava to close the door every time they went down there (although they do almost every time). We are so incredibly thankful, as it could have been catastrophic, but we're feeling unbelievably low about ourselves right now. We feel so guilty that we weren't watching more closely.
God graced us with protection over Ella last night. She woke up with us this morning as her usual self, just with a splint on her arm.
Obviously this will make things even harder for our sweet Squishy than they already are. It's her right arm, which means no more sucking her fingers and "charging"; and eating and other activities will be more difficult for her. We're not sure how well she'll be able to use her wheelchair during her recovery.
Although she wants to suck her fingers, she's been doing really well with the pacifier to comfort herself. We've actually been trying to get her to stop sucking her fingers, as doing so puts an enormous amount of extra unwanted germs in her mouth.
Now that her right arm is incapacitated for a little while, we can work on her using her left arm more... something her therapists have been trying to have her work on, as it is much weaker than her right. Now she has no choice.
As for the basement door, our first order of business this morning was a trip to The Home Depot to get a "Spring-Powered Door Closer"...
Time will heal her arm.
Time will heal our consciences.
Time is what we have with her now... and more than ever, we understand that anything... ANYTHING can happen in the blink of an eye.
This past Tuesday (11.15.11) Ella was evaluated and fitted for a "stander". This is a piece of equipment that holds her in the standing position, so she can bear weight, which is so important for a child with SMA.
Weight bearing helps increase bone density as well as improve respiratory health, two essentials for children with SMA.
The process for getting Ella the stander is very similar to that of getting the power wheelchair... first she is evaluated and her physical therapist and the vendor decide on what will work best for her needs. Then the letter of medical necessity is written by the PT, which is then given to Dr. Murphy (Ella's pediatrician), who then signs it. The letter goes back to the vendor, who then submits it to the insurance company. And then we wait for approval (hopefully). But this process takes a long time... the letter of medical necessity for her power chair has yet to reach the insurance company (and she was evaluated over 5 weeks ago - we were told that part would take about 2 weeks).
The stander that was decided upon is the Bantam "Easy Stand". It has a sit-to-stand feature as well as a tilt feature. It comes with a large activity tray as well. This stander will also allow Ella to push right up to the kitchen table for activities.
The vendor was kind enough to let us keep the Easy Stand that he brought over for a couple days. Ella's PT said that the goal is to work up to 2 hours of standing per day (not all at one time). The first day, Ella stood for a total of 2.5 hours! She even did her entire OT session standing!
I have to say that I was really concerned about how I would feel seeing Ella in this "contraption". But it had the opposite effect... seeing her upright and vertical, standing like any other 1-1/2 year old was incredible! And she was so happy!
It is definitely a larger piece of equipment...
Getting everything into position for her to stand.
Playing her iPad
Such a big girl!!
Sitting at the kitchen table.
Standing at the kitchen table.
The clear activity tray helps with her spatial awareness.
Speaking of large... Ella had her monthly dietician check-up yesterday, and she's gained 1/2 lb.! Woo hoo! She really hasn't been eating much for the past couple months, so the dietician suggested that we supplement with PediaSure. Luckily Ella LOVES it and has been drinking up to two 8-oz. containers every day (which is almost an extra 500 calories per day, plus a lot of important nutrients!). We've also noticed a big improvement in her mood and energy levels since we started supplementing :) We're going to try some more aggressive measures to help her GI issues (namely constipation), hoping that will help her build up more of an appetite for solid foods... stay tuned!
SMA is a progressive, degenerative disease. It's robbing my daughter of movements we take for granted. It's debilitating to her in so many levels. It strips her of the ability to even lift a cup of water unless we fill it just right to keep the weight appropriate for her weakened muscles to manage. It destroys joints and it wreaks havoc on the spine.
As a parent of a child with SMA I can honestly say that this disease beats on the emotional and physical well-being of me.
At night when the house is quiet and the clock is turning its hands without anyone looking; at 3 a.m. I make sure Henry and Ava's covers are doing their all important work of keeping them warm...when I reach Ella's crib I needn't adjust the blankets, for she hasn't moved since we put her down. The light of the moon sits restfully on her brow and I see her frail body lying there, housing the soul we know as Ella. I watch her sleep for a moment and then touch gently her head, with a finger I wipe the sweat that has accumulated due to decreased oxygen (SMA kids tend to get less oxygen into their bloodstream during sleep…night sweats are one result). I kiss my two fingers and run them over her face. I walk out of the room and to my bed. I lie there. I wonder what will happen and my mind refuses to go there...I know what will happen and I hate it.
Each day I grow closer to Ella as she draws my love to her without effort. All my kids do that. It's what I most cherish about them.
Each day when I wake up I know I will battle SMA in my head, my heart, and my soul. Each hour presents itself with its own agenda. Some hours bring to me heartache, others slap me with anger, and still others take me away to a place of sadness and despair, hopelessness and anxiety. Still others offer me a reprieve; a chance to regain who I truly am.
I am all right...then I pick her up and feel her body slump against gravity. Together she and I fight it. I can't fight too hard for her for she wouldn't be able to handle the movements I would impose...it's an awkward dance we do with gravity.
I am all right...then I hear her cry from across the room and see her slumped over on the floor, unable to get up, or even move herself for that matter. She calls for mama or dada…her little voice rings through the house…the tone is all too familiar now. Sometimes Ava or Henry will help—they are such a blessing.
I am all right...then I see her fingers hyper-extended and know that her ligaments are not able to do their job properly...sometimes she looks at her hands in a funny way. I think she knows something is not right with them. I wish I could take it all away.
I am all right...then a flood of emotion fills my being; sometimes it's fear, sometimes it's love, other times it's anger, and often it's numb. I understand SMA yet I cannot grab a hold of it yet...
I am all right...then I see her smile and my heart breaks for my little girl.
I am all right...then I cradle her in my arms before bed, sitting in the rocking chair, telling her, "Everything is going to be all right." She looks at me with her big, soft, beautiful eyes and her mouth curls up in a slight smile...I am drawn to her...I love her with all of my heart....which aches for her life.
I am all right...then I find a quiet moment and I ask God to continue to carry me. I look back and see that He has been for quite some time. In His arms I search for His eyes, His smile, His voice to tell me that "Everything will be all right". My life right now is a confusing mess. I cling more tightly than ever to my wife and kids...I do, however, build a wall of emotion around myself. A wall that I will not let be penetrated for it is too scary for me to let it all go. My life has thrust upon me numerous trials and my wall is thick. I know God has been gently taking my wall apart for me, I wish He'd hurry up as I feel as though it is closing in on me…darkening my world once again.
I am all right...then SMA takes another crack at my family. It threatens our way of life, our quality of life, and presents itself as a menace to our well-being. It threatens to tear us apart. It is persistent and unforgiving.
It's a horrible disease.
I grow more and more tired each day. I am losing articulation of how I feel, for my emotions have been over-taxed; I cannot keep a hold on them long enough to identify them...for as quickly as one emotion comes; it leaves--and another one replaces it...the cycle continues 24/7.
There is no rest for the weary.
I am all right...then again, I can't really say that for sure.
With a heart painted on her cheek and a beautiful bow set in her hair, Ella looks to her new found friend Conlin.
Conlin is a 10 year old boy. Audrie is an 11-year old. Chris is 9 years old.
Conlin is a student of mine this year, Audrie was one from last year, and Chris is still in 3rd grade.
They are remarkable people.
Audrie & Chris, out of the goodness of their hearts, chose to help Ella by having the money that would have been spent on their birthday gifts instead be donated to Ella. They, along with their friends, presented us with generous donations that helped purchase supplies that Ella needs for her everyday living. Lindsay and I were overwhelmed with their generosity...hoping that someday our own children will be as thoughtful and caring.
For his 10th birthday, Conlin's wish was to help someone. Like Audrie and Chris, he didn't want presents for himself; these kids weren't thinking about receiving. Their hearts were somewhere else...in a place that few 3-5th graders visit on such a level...a place of true empathy and compassion.
Conlin's family started planning his birthday party some 6 months ago. It was to be a "Carnival for a Cause". They wanted to invite the entire 4th grade class (about 100 kids) to the party. Instead of presents, Conlin wanted whatever money that would have been spent on a gift for him to go toward a good cause.
The last piece of their plan was to find a cause to make their donation.
When this young boy learned of Ella's disease he told his parents that he wanted to celebrate his birthday by helping Ella. He too, like Audrie and Chris, looked outside of himself.
The church basement in which the "Carnival for a Cause" was held had been transformed into a kid's delightful paradise of games, prizes, food and fun. Laughter, music, face-painting, sports games, and more filled the afternoon as Conlin's friends helped him celebrate his 10th year of life. In that celebration Ella (along with her entire family) was invited...we were welcomed with open arms and loving care.
Our family found itself, on this day, surrounded by children and adults alike that have reached out their arms, in a loving embrace, as we do our best as a family to cope with the diagnosis of SMA.
A portion of the funds raised through the compassion of 10-year old Conlin will help pay for the new floor we had to install so that Ella can use her wheelchair in our house. With this new floor Ella can move about the first floor freely, explore her environment, and feel more connected to her family as we naturally move about the house. This gift is immeasurable.
The remainder of the funds will be donated to FSMA (Families of Spinal Muscular Atrophy) to help support their efforts to find treatments and a cure for SMA. Our hope for Ella, as well as the many children & families affected by SMA, lies with the research already underway.
As I was leaving today I told Conlin that I cannot wait to tell Ella, when she is older, about the student I had who shared his birthday with her on Nov. 12, 2011.
Birthdays are a celebration of life. They celebrate the arrival of each us of into this world. They signify the moment in which we found ourselves among those who love us the most. With the gift of life birthdays call for gifts. Most of the time, the gifts are bestowed upon the one whose birthday is being celebrated. Conlin, Audrie and Chris however, turned that around...they gave a gift. A gift that will make an impact on all of those involved in the celebration. A testament to what might have been meant when the words, "...love one another as I have loved you." (John 13:34) were uttered some 2,000 years ago.
When I was taking the picture above, we couldn't get Ella to look at the camera. She kept looking at Conlin as if she knew that he was sharing his day with her out of the purity of his heart. The day will come when we can tell Ella the story of how a girl and two boys, whose path in life crossed her father's path, stopped on that path to extend their hands out, reaching for Ella, and embracing her in their kindness.
Tomorrow (11.12.11) marks exactly three months since Ella was officially diagnosed with Spinal Muscular Atrophy.
It's been quite the ride so far, even though we've barely scratched the surface of our new life with SMA. Many ups and downs (but definitely more downs than ups). SMA (and everything that goes with it) has completely taken over our lives.
It's hard to imagine getting anywhere close to what our "normal" used to be, when it seems that every time we move closer to acceptance, we get knocked down again.
This week it's Ella's fingers. Her PT has noticed that her index fingers have been becoming hyperextended over the past month or so. Her OT took a closer look this past week and said that it's because her hands are becoming weaker, thus causing her ligaments that hold her joints in the proper alignment to become loose. After feeling the joints in Ella's index fingers, her OT said that her joints are already misaligned and will only get worse until the they ultimately become dislocated. At the top joint of her index finger, the tip of Ella's finger is almost always pointing down, and if she is unable to gain the strength to hold it straight, it could develop into a contracture (become stuck in the bent position).
Ella will most likely need custom hand splints to wear when she sleeps to help correct this problem. For those of you who know our Squishy personally (and have been "charged" on), you can probably guess how much she's going to like wearing hand splints that prevent her from sucking on her fingers :(
Here is a video that we took during OT this week to send to Dr. Silver (her neurologist), showing her "swan neck deformity" that is developing in her index fingers.
Despite the many discouraging days that go along with SMA, I feel like I've grown and changed so much as a person in this short amount of time. As a mother, as a wife, as a daughter, as a sister, as a child of God. My priorities in life have shifted significantly.
I'm really beginning to see what's important in life. Truly important.
It's not our house, or our car. It's not the clothes we wear. It's not how much (or how little) money we make. It's not the things we're able to buy (or not buy). It's not the little disagreements we have with each other, our loved ones, or anyone else. While these things play a role in our lives, they're not what matter most.
Live and love.
That's what it comes down to. Living life and loving each other. Life is not all "cookies and flowers" (how I used to describe myself to Michael). There are ups. There are downs. Some people have larger ups and downs than others, but we all have them.
While we think of a "lifetime" as being forever, life is actually pretty short. Especially when you think you have it all figured out.
But the truth is, no one knows what tomorrow will bring. We can sit here and plan all we want… plan for the Christmas season, plan for a trip next year, plan for a new house and/or car, plan for our kids' college tuition (ha!), plan for retirement. But the bottom line is, if we don't live for today, we're not really living.
Three months. When you think about it, it seems like such a short amount of time, but it's felt like an eternity to us since Ella's diagnosis.
I've reached a point where I have to decide if I'm going to focus every piece of my being on how devastated I am about our Squishy, or if I'm going to try to start moving forward. Accept the cards we've been dealt, and try to live life to the fullest. Easier said than done, I know, especially when we continue to receive discouraging news.
But what would Ella want? I don't think I have to wait for her to be able to speak the words to me. I know exactly what she'd want.
Everything that happens (or ever will happen) is all part of a plan. Not my plan or yours, but His plan. One day we'll understand, but until then, what we have to do is very simple.
Live and love.
Focus on the many blessings in our lives (we ALL have them, even when they seem hard to find sometimes).
We'll still have some adjustments to make. Physical, emotional, spiritual, social, financial. It will probably take a lifetime to truly "accept" what is going on. It's not going to be easy and I'm sure we'll have setbacks.
But this is our new normal. Having good days and not-so-good days is what our future will be about for the rest of our lives. It's not what we planned. But it is what it is. It's not worth wasting time trying to understand or change things. It's not worth wasting what precious time we have on being angry and upset.
I'm going to try stop questioning "why" things are the way they are and instead start trying to do what I AM able to do…
When we drove through the parking garage we found ourselves parking close to the exact spot we had parked when Ella had her EMG this past July. It was then that we unofficially knew she had SMA...it was then, in that spot, that our lives took on a completely different meaning. As we passed that spot we both looked and a shudder ran through our bodies...we found parking just a few spots away.
We pushed that awful day out of our minds, gathered up our third baby, bundled her warmly (with her "b4SMA" blanket) in her stroller and went to go meet Dr. Lucille Lester, Pulmonary Specialist.
Dr. Lester is fantastic. She is experienced, easy to talk with, and approaches her craft with care, understanding, and with a logical sense about her. We like Dr. Lester and she is now part of Ella's medical team.
Our main focus was to baseline Ella's respiratory system and develop a plan for her so that we can keep her as healthy as possible for as long as possible. Dr. Lester made it very clear, with a soft yet firm approach, that any virus can lead to disaster. We listened intently.
The day to day plan is to keep the germs at bay. This means our whole family must wash our hands religiously. We must also ask anyone who wishes to hold our Squishy to do the same. If anyone has a cold or any virus, Ella must keep her distance.
Included in the day to day plan is a new therapy called "manual chest therapy". Dr. Lester gave us two hand-held cup-like devices made of a soft rubber. There are certain spots on Ella's torso, back, and sides that we are to firmly pound for a total of 20-30 minutes per day (if she does get sick, we will have to perform "manual chest therapy" several times a day). This will cause vibrations in her chest cavity and will help to move any secretions from the smaller branches of her lungs to the larger, more centered branches where she can then cough them out more efficiently (see the video at the end of the blog).
At some point she will need a vest that will be connected to a compressor to do this for her...and most likely a cough assist machine. That, however, is down the road...we will see how she fares this winter. We will be visiting Dr. Lester again in February and every three-months thereafter to re-assess.
The next step was a chest x-ray to baseline her. She was a perfect patient. Dr. Lester was pleased with her lungs. They are clear and have ample capacity in order for her to breathe normally. She did say that her diaphragm was a bit high, but this is to be expected from a person with weak muscles. All in all, the x-rays were great!
Ella has developed quite the personality when we visit the doctors. She melts them with her charisma and always is tolerant, cooperative, and a joy. Doctors, nurses, therapists, technicians, and support staff always give us compliments on how well she does...
Writing this blog together, as husband and wife, seemed appropriate since the focus extends itself beyond our immediate family, stretching its reach to those of you who surround us. Extending to those of you who see us everyday and to those who we have yet to meet. We know there are so many people out there who are following our story--who are a part of our story.
The highs and lows that we experience are often absorbed by you. We understand that we are not the only ones who are suffering at the hands of Ella's SMA. We appreciate your goodwill and compassion. We understand your feelings of helplessness. People have expressed in numerous ways their desire to help; "How can I help?", "What can we do now for you?", "What do you need?" are questions we hear often.
Believe it or not, those questions are not easily answered. One might think in a situation such as this that we would be able to articulate our needs. Not so. We wish we could do so more easily; more readily. Our needs, the needs of our family, are deeply rooted in several areas...just like any other family.
The fact remains that we do need help. This help, however, is going to be needed on different fronts--namely emotional, spiritual, social, physical, and financial.
Looking at each one:
Emotional Support:Knowing that people are there for us to talk with is invaluable. For the past three months the sole focus in our minds has been SMA. We have come to realize that we cannot constantly think about SMA and what it's doing to our family...we have to have emotional breaks. There are other parts of life that need our emotional attention. Often times we find the person whom we feel we want to talk with and take it from there. Other times we simply are running on overload and cannot talk about it. It's never anything personal, it is simply when and where we find ourselves.
Spiritual Support: We have found that our church (St. Timothy Lutheran Church) has become instrumental in our lives. We are being drawn closer to God, closer to the members of our congregation, and closer to each other. As Christ put it so eloquently, "For where two or three are gathered in my name, there I am in the midst of them." (Matthew 18:20). We are finding that the thoughts and prayers that so many are offering truly provide us with great comfort. This is so important to us for it speaks directly to Him, who is in control.
Social Support: While SMA has been thrust upon us, it is not healthy for it to be all-consuming. We would simply be crushed under the weight of it as it takes over our life. Our family still needs to go out, be with friends, and be treated as any other family. All families have stress, all families have "issues" and "situations" that need attention. We are a family that happens to have a child with a terminal disease...this does not define us...it simply presents us (and those we know) with a different set of challenges. We are slowly rekindling the need and desire to once again connect with our friends as we did before the diagnosis came in. When our time is not as easily available as it once was, it's truly not personal...but we do miss you.
Physical Support: A hug goes a long way.
Financial Support: Of all the support types, this one is a difficult one for us to address. Finances are a personal thing and the pride associated with providing for one's own family runs deep in our society. That being said, we know that we are going to need financial help. What that will look like we really do not know. We do know that whenthe time comes and we need some serious financial help we will ask those who have indicated that they will help us in that capacity. Currently there are people who are putting together fundraisers for Ella...the funds raised from these will help tremendously in what we forecast we need to accomplish (home modifications or new house, special equipment, daily activity equipment, etc). The tricky thing about SMA is that each patient is different...the needs for one patient may look quite different than the needs for another patient with the same diagnosis.
One thing that rings true...whenever we are asked for "what we need" and we are unable to articulate an answer, we want all to know that we rely so much on your thoughts and prayers; for Ella, for us, for the many children and families affected by SMA. Each one of you has already made a mark on our lives...you have truly helped us in ways that you may not even realize.
On Wednesday Lindsay and I will take Ella to see Dr. Lester, her pulmonologist (University of Chicago Medical Center), for the first time.
Of course, the feelings about this appointment are mixed.
I am anxious to see what the doctor will say about Ella's current ability to breathe. We aren't seeing anything unusual yet but we do know that the subtle signs of impending breathing problems can be hard to detect by parents/caregivers in the early stages.
I am terrified because I know that respiratory health is a critical component to Ella's survival. It terrifies me, I think, because we are now entering into another aspect of SMA...a new realm. This is where the real work in keeping her healthy comes into play. The responsibility is tremendous.
We have been in contact with several families that also have kids with SMA. We know that breathing assistance equipment, cough assist equipment, machines that monitor breathing, etc. will all be a part of our life. It is intimidating to say the least. It seems as though we get past one hurdle and there are a hundred more before us...
The appointment will hold many answers for us. The pulmonologist will be the most important part of Ella's medical team. I'm anxious to begin this all-important relationship with Dr. Lester.
We enter this week holding on to one another...for it's within each other that we find our strength...in each other and in those that surround us.
I've come to the realization that SMA is not a reality for me. Not even close.
I haven't been an emotional wreck lately. In fact, I haven't thought much about SMA at all. And it's intentional.
I've realized that I'm doing everything I can to create things to keep myself busy so that I don't have to think about the reality of this awful disease. And it's working.
One way I keep busy is by doing the many extra things that we have to do for Ella (make phone calls, research online, look into car/home modifications, etc.). It's weird, because I would have thought that these tasks would cause me to continuously think about SMA, but surprisingly, they don't.
But every now and then it starts to creep it's way in… I see Ella struggle with tasks that should be very simple for a 16-month-old. But then she'll move on to something else and forget about it. She's starting to have little tantrums like any other 1 1/2-year-old, so it's easy to pretend that her frustrations are typical.
I haven't allowed myself to stop and think about what's going on inside our baby's body.
I'm terrified to.
How in the world can a mother possibly go about her day-to-day activities knowing what SMA is doing to her sweet little baby?
I don't think I'm in denial. I know SMA is there, I'm just choosing not to think about it (emotionally, that is). I'm not sad or upset right now. I actually feel pretty numb.
The other day we were at the playground and there was a moment when Ella was sitting off to the side with me, watching Ava and Henry play. I could see (and feel) the longing in her heart to play with them, the way they play. I could almost feel her start to understand that something isn't right. But I quickly pushed it far away from my mind (and heart), because honestly, who would be able to recover from this simple, yet powerfully emotional experience?
Then this morning, we were driving in the car and Ella wanted so badly to play with this little toy camera that we have. The problem is, she's not strong enough to hold it. She can grasp it for a few seconds, then it slips from her weak fingers. I kept trying to give it back to her when we'd stop at red lights, but every time it would fall after a few very brief moments. I've never heard Ella cry out of frustration like she did this morning. She was sobbing, gasping for breaths in between. I almost lost it in the car with her. But once again, I forced myself to push the emotional aspect of it out of my mind.
While I know my feelings (and choices) are a defense mechanism, deep down I know that it's probably not the healthiest way to "deal" with what's going on in hopes of moving forward.
I feel like I look and act like I'm handling things pretty well, but who am I kidding?
