Faith in the Storm

The anxiety and stress of being a parent is something we all face. We are given this beautiful gift of a child and we pray we can help them along this journey of life without messing up. We love them more than we could ever imagine loving someone. It becomes a journey filled with both laughter and tears.

When you add autism to the equation, the highs of parenthood feel higher and the lows feel lower. Add one very prone-to-worry, very emotional momma and you have a recipe for chaos, or at least high blood pressure.

This is where my journey has taken me these last few silent months. The stress of every choice and the second guessing of every decision has kept me up at night. The questions replay over and over in my mind: Am I doing enough? Am I advocating for his needs enough? Is there more I can do? What if I fail?

Because of his autism, there are a great deal of unknowns left in Eli’s life, and it’s difficult to predict what he may or may not be able to do. But having so many unknowns can be daunting and scary, and only brings with it more questions: What effect will autism have on him as he grows older? Will he learn to cope and be able to be an independent adult? Will communication always be a struggle for him? While I can’t pretend these issues do not exist, I know it is not healthy to constantly dwell on them, and we have repeatedly seen Eli surpass expectations; we thought he might never speak, but he proved us and the doctors wrong.

Even as Jason and I work hard to meet his needs and formulate a plan to conquer these challenges, life continues to throw us a curve, and our plans continue to be pushed backward, how many opportunities for therapy have we lost, for how many different reasons? And as time passes, we feel the ever increasing pressure to start intervention immediately, when it will be most effective. Here we are, Eli is five, and no consistent intervention is yet in place.

The challenges grow. Drastic choices plague our mind. Should we relocate to another state with more services available for children with autism? Could we move to a new place like upstate New York or Pennsylvania? We could abandon everything because Eli is worth it, his future is worth it but what about Adam and Joseph? Is it fair to rip them away from family and friends?

This is where I have lived these last few months. I have dwelled in the worry and what ifs. The burden has been a load almost too heavy to bear.

I am reminded today of Peter in the bible. You can read this account in Matthew 14:22-33. The disciples are in a boat and the waves are tossing them around. Jesus walks on the water to their boat and they are terrified He is a ghost. Jesus tells them not to be afraid; Peter asks to come to Jesus.

First, let’s give Peter some credit for having the faith to even get out of the boat and walk to Jesus in that tumultuous sea. I think I would have been happy simply waiting for Jesus in the safety of the boat.  Not Peter; he gets out and walks out to Jesus. But as he is walking he notices the wind and the waves and becomes afraid. He begins to sink and cries out for Jesus to save him. Jesus pulls him out and says to him, “You of little faith why, did you doubt?”

I feel a little like Peter. I am being tossed around in the stress of life and somewhere along the way I have lost my focus. I am drowning in the sea of life.  Although I have never left God and still pray about every situation, I have had little faith in His ability. I may talk about faith but I am still trying to handle all the stress of the situation myself. “You of little faith” stings a bit.

But not anymore. I am letting go of the stress, the worry, the anxiety. I will place Eli and his future in the hands of God.

In Matthew 11:28 Jesus says, “Come to me all you who labor and are heavy laden and I will give you rest.” Psalms 55:22 says “Cast your burdens on the Lord, and he will sustain you.”

While I am doing everything I can do, and will continue to do to the best of my ability, I need to remember my strength comes from God. My hope is in Him, the author and finisher of my faith. I believe God is in control and I will give my stress to Him.  In doing so I am praying for the peace of God and the rest I so desperately need. I pray that if you also find yourself drowning in the difficulties of life, you will seek God and find rest – don’t try to do it all on your own. I have, believe me, it doesn’t work.

I think it is a process to let go of worry and replace it with trust. I need to remind myself that God has been faithful in this journey already and I can place my hope in Him. Jason and I can’t do this on our own.

So this is where I have been and this is where I am now. I am not sure of the future but I am trusting in the one who holds our future in His hand.

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Jude

I take out the silver cross and place it around my neck. It’s a symbol and reminder that I wear often, but always on June 13th. It’s been three years, and as grief does, the pain has faded from daily to weekly to only popping up every once in a while unexpectedly. Yet, June 13th still holds moments I remember so intensely.

Jason and I were in the emergency room that day. I had just begun my second trimester of an unexpected pregnancy. We already had two amazing boys, Adam and Eli, and had not planned to have any more when I found out we were expecting. I feel every child is a gift from God and thought, “Ready or not, this is God’s plan.”

While waiting for a sonogram, I felt nervous but not panicked. We had been through a difficult pregnancy with Eli: low fluid, early labor, and I had to take a pill to keep him from coming too early.  But in the end, Eli was born healthy. This situation, however, was so different. With Eli, I had been hooked up to monitors and given medication to stop labor, but I was also further along. Needless to say, I was concerned at how slowly things seemed to be moving in the ER during this visit.

As the pain intensified, I was taken to imaging to get a sonogram. Worry began to embrace me, and I started to pray as they wheeled me into a waiting room. In what felt like forever, Jason and I finally were taken in. As soon as the lady pressed the instrument onto my belly, I knew. It was as if all the wind was knocked out of me and I could barely choke out an “I don’t see the baby”.

The screen flashed black and the lady running the test bowed her head and quietly murmured an “I’m sorry”. What followed could only be described as a whirlwind. Frantically, I tried to grasp on to hope. Surely, God would not abandon me. I went to the bathroom and discovered a very large amount of blood, taking away from me the shred of hope I had left.

Not too long after being wheeled back to the ER, I felt what I could only describe as the sensation of giving birth. The nurse came in and quickly removed the baby behind a sheet where Jason and I could not see.

All at once, it was gone: the pregnant feeling, the connection, and I was empty. It was the same experience as giving birth to my other children, but with no joy, no one to hold, no cries, no laughter – just an empty feeling; the emptiness in my body and the emptiness in my arms.

The nurses brought us our tiny baby boy. We named him Jude. He was so small they placed him in a cup. He was every bit a baby with eyes, nose, fingers, and toes. Perfect in every way, but not developed to survive in this world. There are no words to describe that moment. No words to describe the pain.

I could write to you about how sad and alone I felt. About how well-meaning people tried to comfort me but used all the wrong words. How I had to be admitted that evening due to blood loss, and the agonizing realization that the hospital had placed me in the labor and delivery ward. Every time a baby was born, I had to hear a soft lullaby over the speaker. It was agony.

I would love to tell you that I instantly looked to God and sought comfort in scripture and worship, but that would be a lie. I was angry at God. How could He give us an unexpected gift only to allow it to be ripped away?  Why did God not intervene?

I do not have that answer and I do not expect to receive it. What I can tell you is how I got through the worst experience in my life.

It happened one day as I was driving alone in the car. Jason and I had been making decisions on how to proceed with a burial and what kind, if any, memorial service we would hold. I cannot speak on my husband’s behalf, but I never saw someone so patient, caring and understanding. I know he is the man God has sent for me.

I was in the midst of all this chaos in my mind as I was driving and I had it out with God. I let all the anger and frustration I had pent up fly right out of my mouth as a heavy flow of tears streamed down my face. It just so happened that I had the radio on, and as I silently sobbed, the song “Held” by Natalie Grant began to play:

“This is what it means to be held, how it feels when the sacred is torn from your life and you survive, this is what it means to be loved and to know that the promise was when everything failed, we’d be held”.

As I listened, a peace that I cannot describe came over me. God was in the car, holding me. He did not leave me. In the following weeks, we held a memorial to honor the short presence of little Jude, and I sang that song. God held me every step of the way. God’s grace and mercy were so real to me in the midst of my pain and suffering.

So why did I choose to share this story with you? I don’t know what you are facing in your life or how much pain you may feel. Maybe you are without any hope.  What I do know is there is a God who loves you. If you call out to Him, He will hear you. You may still have to go through the pain, but God will give you the strength to do it. During this time, I came upon a scripture which we had etched into Jude’s urn, Lamentations 3: 17-24

17        My soul is bereft of peace;
I have forgotten what happiness is;
18        so I say, “My endurance has perished;
so has my hope from the Lord.”

19        Remember my affliction and my wanderings,
the wormwood and the gall!
20        My soul continually remembers it
and is bowed down within me.
21        But this I call to mind,
and therefore I have hope:

22        The steadfast love of the Lord never ceases;
his mercies never come to an end;
23        they are new every morning;
great is your faithfulness.
24        “The Lord is my portion,” says my soul,
“therefore I will hope in him.”

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To Eli’s Pre-K Teacher

Every morning I take his little hand in mine and we walk together to the back of the school. Some mornings there are tears and a struggle but most mornings there are smiles and laughter. As we walk I often talk, sometimes I sing, and on occasion we sing. As we walk we stop to stare at the trees. He smiles. He flaps. He makes indistinguishable noises.  Most mornings I kiss him and hurry on my way but every morning I am so happy to be leaving him in your care. In fact, lately as I have been counting down the days each morning, I feel a small tug at my emotions. As I count down 23 days left, I realize only 23 more mornings I get to walk with him, only 23 days of pre-k left.  I am beginning to feel a bit of a panic. How will he ever make it in the big school? How will I ever make it without you?

I never truly understood what a great teacher was until my child became a part of your class.

You let me talk so freely to you. The door is always open. You never make me feel like I am a hassle or a bother. You are always giving of your time no matter what hour of the day. You are vested in Eli. You love my Eli. You meet each challenge with a smile and a sense of humor. You encourage me when I feel like less than the parent that I want to be. You are able to help me and advise me without talking down or making me feel less than.

Thank you from the depths of my heart for guiding me on the beginning of this journey. Thank you for holding my hand and listening. For the many tears shed down both our cheeks; the triumphs and the setbacks. Thank you for your listening and non-judging ear. So often I have come to you feeling very defeated but before I leave, you manage to help me find hope again.

Thank you for bringing out the best in Eli. For seeing his strengths and refusing to let him do anything other than his best. Thank you for pushing him and for pushing Jason and I. Thank you for setting high standards and goals, never limiting him.  Thank you for seeing my child; for treating him as the wonderful, loving little boy that he is.  Thank you for loving him and cherishing moments with him. Every time that you share a sweet story or funny moment, it warms my heart.

I know you will always throw the praise back to Eli or his parents, but you have to know that you have played a huge role in the successes we have seen over these last two years.

Words cannot express how grateful I am that you are a part of our lives. You have made a difference in Eli’s life, in my life, and the life of our family.  As we journey on and Eli becomes the young man God has made him to be I know without doubt he will impact others. Who knows how many lives he will touch or how God will use him. He already is changing people; I know he has changed me.

You may not be able to talk about God to your students but they can see His love shining through you as you minister to these little ones and their parents. Thank you for allowing the hand of God to work through you to change the world one student at a time.

Amazing Love

Having a child on the spectrum is, on its easiest days, a challenge.

I still pray every night for Eli to be healed and for him to be relieved from the struggles and challenges that he faces every day. On those days when I allow fear to grip me or sadness to take over, I plead with God to help my baby. And then there are the days when I feel I can’t help at all, and I go to sleep, heart-broken, wishing I could relieve him from the stress he faces.

However, in the middle of all of this, of the day-to-day routine, there is something so sweet and explainable about it all.

Besides praying for healing, I have started to pray that if God chooses to allow Eli to walk this path, that He bless him with the tools he will need to cope with a world not made for him. I pray that God gives him strength and confidence, and that as his mother; I can instill an undefeatable self-worth into his life. I pray that God helps our family grow to be the best support system we can be, and that Jason and I can be best parents we can be. I pray for guidance in the choices we face, and for Eli to be surrounded by people who will encourage him and advocate on his behalf.

Baby Joseph is one and growing by leaps and bounds every day. He is hitting every milestone (as parents of a child with autism, we are milestone experts!). I find myself relishing every word spoken, every long gaze. Today I held him and just soaked in the eye contact as he drifted to sleep.

I took so much for granted with Adam; while I enjoyed the newness of each first laugh, step, and word, I was so in a hurry to move to the next phase. Having a child with autism has taught me to enjoy the moment and appreciate the little things, to slow done and savor, not to be in a hurry to see my babies grow up.

Eli has always had a way of showing us affection, whether it was a smile, a squeeze, or, my favorite, leaning his head on your arm as he eats dinner beside you. His precious little personality exudes love. But even with all this affection, it was only a short time ago – at age four – that those three little words came out: “I love you!” Amazing! I know of others who have yet to hear those words and my heart breaks for them. Having a child with autism has taught me that sometimes the littlest words or actions mean the most. Hearing your child say “I love you”, is one of those moments, and I hope to never take these words for granted, not from Eli, or from any of my children

I recently read a blog title that warned, “Don’t tell me my child’s autism is a gift.” No, autism most definitely is not a gift; the gift is to see the beauty, grace, and love in spite of it.

Tear Stained Burgers

It was your typical Saturday of errand running, busy and with numerous stops. That evening we decided to head to one of my favorite restaurants, well known for their yummy hamburgers. It was a big treat for me, and the boys’ first visit. As we entered and were shown our table, the hostess complimented us on our adorable boys.

The kids menu was a picture menu, which was exciting for me; Eli tries so hard to tell us what he wants to eat, but his verbal communication, although progressing, is still very difficult to make out. Picture menus provide him the opportunity to choose an item with a simple point of his finger. The drinks, however, were not of the picture variety. So I asked Eli if he wanted lemonade or milk. I heard “Lemonade”; that was mistake number one. When the lemonade arrived, Eli began to argue rather loudly and unintelligibly. I smiled gently and said to him,” Here, take a drink”, hoping that a taste would change his initial objection. He tried to take a sip, but he spilled some lemonade on his shirt.

Now, you should know that even though my son loves baths and swimming pools, rain or the slightest water sprinkle sends him into a tailspin.

Back to the spill: With a small spot of lemonade on his shirt, Eli lost it. He screamed and cried and yelled, “Milk! Milk!”  I tried very quickly to quiet him down, and as I gradually calmed him down, the waitress graciously handed him a new cup with milk. Crisis averted. And almost on cue, a nearby table started singing “Happy Birthday”.

Did I mention Eli cries in terror over that song? Yep, in our house, we do not sing “Happy Birthday” without first designating a family member to take Eli for a short walk.

At this moment, my husband quickly scooped him up and took him to the front of the restaurant, leaving me and the other two boys at the table. At this point I smiled and realized…wait, I have two other children! Poor kids! As I tried to make conversation with Adam, and avoid all eye contact with anyone in that room, my youngest, Joseph, began to cry.

I grabbed him out of the high chair and tried to soothe him. The waitress returned to our table, this time with coloring sheets and crayons. Poor Adam! He sat back in his chair and colored silently. Meanwhile, Jason walked back to our table with a now calm Eli and returned him to his seat.

Not even a half a moment later, Joseph cried out loud, and Eli erupted again, this time into an ear piercing scream, pounding his head against the back of the chair as if in total pain. I handed off the baby to Jason and took my crying son away from the table.

As I sat in the front lobby, Eli tightly hugging my neck, I looked out at the restaurant. I checked back on our table.  My husband was trying to engage our oldest, so he didn’t feel left out, and soothe the baby at the same time.  I looked at the hostess and guessed that she didn’t think our boys were so “adorable” now. I looked at the customers sitting near us and wondered if they wished they had been placed in a different seat, or worse – thinking they must be drawing massive conclusions about Jason and my lack of parenting skills.

I tried to hold in the tears as a calm-again Eli, noticing the front door being opened and closed, flapped his hands excitedly.

I am good at choking back the tears and wearing a smile. Why? It’s easier.  A smile makes others around me feel more comfortable.   It makes me feel stronger despite their stares, side comments, and judgmental glances. I refuse to let them see my pain.

When I noticed our food was being served, I took Eli back to the table. He bounced up to his chair like all was right with the world and the last twenty minutes had not happened. I gave him a smile and a kiss.  He squeezed my arm, and he began to eat

I looked at my husband; he shared quietly with me that the table close to us asked to be moved. I smiled – can you blame them? They paid money to enjoy a nice meal, scream-free. We chuckled a little to ourselves, but there was a tinge of sadness in our halfhearted laugh.

During our meal, we discussed if we should stop eating out with the kids. Honestly, we had only experienced this kind of outburst twice. Usually, Eli did well when we ate out; I mean, he has no volume button and can be loud, but we pick loud family friendly places on purpose.

Toward the end of the meal, I noticed Eli getting agitated yet again because, wouldn’t you know it, someone else was having a birthday. I quickly picked him up and asked Jason to pack my food up so I can finish in the car. I grabbed Joseph and Eli and headed for the door, expecting to hear some sigh of relief from everyone I pass.

As we walked to our car, Eli attempted to tell me something, but I could not understand anything he said. He started yelling out his words to me until, finally, he dropped to the ground in frustration. Though I simply could not understand his speech, I am sure he felt he was being ignored.

I walked quickly to the car, and now, I was unable to hide my tears. The pain of not being able to understand my son, and the reality of the entire evening, had taken its toll on me. By the time Adam and Jason came to the car, I was a mess. What a sight I must have been in the parking lot, crying and holding on to my husband.

This was one of those days that brought more questions than answers, and more frustration than peace. In moments like these, we feel very alone and helpless, but it is in these moments where we decide if we will allow it to break us. Are we going to hold onto each other, to our boys, to our faith?

Not all days are wonderful. Not all moments are easy.  There are many scriptures that have powerful meanings, but one that I turn to in the times I feel most distressed is Lamentations 3:21-23

Yet this I call to mind and therefore I have hope:

Because of the Lord’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.

Christmas Miracle

Christmas is my favorite time of the year and I always feel a bit sad to see it go. This year, however, I am finding it a bit more difficult to let go of the season. This Christmas offered a lot of wonderful firsts for our family. Joseph saw his first Disney Christmas this year; I love seeing his eyes light up at each and every twinkling light he sees! Adam was very involved in making cookies and crafts, which is something I have dreamed of doing with my children since before they were born. But one of the more extraordinary blessings this year came to us from little Eli.

Last year, at the age of three, Eli showed no interest in any lights or decorations as Adam had at that age. We would take trips around the neighborhood to look at lights and, while Adam pointed excitedly at every display he saw, Eli was only very involved in inspecting the toy he had in his car seat. When we decorated the tree that year Eli preferred to play with toys in the room and he had to be coaxed into placing just one ornament on the tree for the sake of a photo. As I relished every Christmas tradition and moment with Adam, a small piece of my heart cried for what I would never experience with Eli. That year Christmas happened around him.

This year, as the Christmas season began to come upon us, I embraced what was sure to be the wonder and joy of Adam and Joseph and resigned myself to including Eli as much as he would allow. Was I in for a big surprise!

It came one night during our weekly search for Christmas lights. Our neighborhood begins to decorate in late November, so I decided to swing by a few houses after Thanksgiving that are usually decorated early in the season, As I approached the first house I pointed and yelled, ”Look! Christmas lights!” Adam squealed from the back, Joseph strained to see from his car seat, and I was surprised to see Eli actually looking out the window. We passed a few houses that night and Eli seemed very interested.

Then it happened: one night as we were driving home, I saw a nicely decorated house and pointed it out to the boys. Adam called back excitedly, “Christmas lights!”, and rather unexpectedly Eli literally screamed out the words “Christmas lights!” I looked to see him smiling and pointing at the display.

From that moment on, no display would escape Eli’s sight, and no ear was safe from the screaming pronouncement “Christmas lights!”  if that were not enough, at Walmart he became obsessed with the Christmas department, though, unfortunately, his favorite item was an inflatable Santa in an outhouse. He loved that display so much I honestly considered purchasing it. Thankfully, my husband was there to talk some sense into me by reminding me that we did not need Santa’s outhouse on our lawn..

One day, Eli came running into the living room and hollered, “Christmas tree right there!”, and pointed at an empty space by the wall. The next day we bought a tree and Eli helped Adam decorate it until the last ornament was hung.

Even more so than pointing out Christmas lights, were Eli’s obsession with Charlie Brown Christmas, both the book and the movie. One day in the car, out of nowhere, he began to sing ‘Hark the Harold Angels’.one of many Christmas songs he learned this year.

Last year I had cried over the fact he could not participate in the church Christmas program, but this year he was a shepherd.

Christmas is about the love and hope that came down from heaven in the form of a tiny baby that would save all mankind. I could not help think that this was God once again, sending me his hope and his love in the form of a little child. A child who last year could not say more than ten words, but this year sang along with several Christmas songs. A child whose future at times seems so unsure, but who was teaching me to have faith, faith in not what I see, not what doctors tell me, but faith in a God who is so much bigger than my small understanding of things. Faith and trust!

This was my Christmas miracle. It was more precious than any gift I could receive. It came in the sound of my little Eli wishing everyone he met “Merry Christmas!”.

Autism: Our Journey So Far

Eli was one and a half when we began to notice something different about him.  He did not speak except for high pitch squeals and an occasional “da-da”. In fact, we called him R2D2 because he made the cutest squeaks and squeals.  Whenever we did something out of the normal routine (such as going down a different aisle in the grocery store) he would have a huge meltdown. The meltdowns were major, but we attributed them to his frustration with being unable to communicate. On one occasion, at an aquarium, I noticed Eli physically shaking at the sight of swimming fish, and his hands would move in a funny way. There were other behaviors that would follow, like his obsession with circles; he ran in circles and wanted to touch and step on anything round, especially manhole covers.  All in all, he just seemed like a quirky little guy.

At his two-year old appointment I expressed my concern on his lack of speech to the doctor. After a brief discussion she recommended speech therapy, but then paused and asked me “Does he make eye contact with you?” I was dumbfounded; it was a behavior I really never paid attention to. I stammered a bit, trying to point out instances when Eli did look me in the eye, to which she replied “Let’s start with speech first and go from there”.

Driving home from the doctors, it dawned on me: all those cute little quirks that I loved so much about Eli did not seem like simple little quirks anymore. As a public school teacher, I know enough about children to realize what the doctor was silently implying – autism.  I immediately went home and googled signs of autism.  All signs pointed that way.

My husband and I started Eli with speech therapy and had his hearing tested. After his hearing was found normal in December 2012, we started on our journey with a wonderful neurologist. Our new doctor didn’t rush into a diagnosis, but, rather wanted to take her time observing and testing Eli  because of how young he was, and really take time to examine every aspect of what could be going on.

Fast forward to July 2014: Eli now communicates with some sign language and pointing but he is also beginning to use a few words. Every day that I hear even the slight sound or semblance of a word, it is an amazing and indescribable feeling!  But with this small sign of progress, other signs of autism, like his hand flapping, have become worse.  More than ever, he is unable to tolerate certain sounds or pitches, and he pinches members of our immediate family for reasons we still cannot figure out. Though at times he can be sweet as pie, more and more he exhibits very aggressive behavior.

On July 3rd a team of specialist and doctors sat down with us to discuss what we already knew in our hearts: Eli is on the spectrum. He has level two autism that is moderate to severe and they believe he may have apraxia of speech, unrelated to the autism, that needs further testing.

The diagnosis was not hard to swallow. We love our baby and we had been preparing ourselves for this diagnosis for a while. The most difficult part came when we asked ourselves“ Can we do this?” Are we able to raise a child with autism?  What if we fail? Research proves that Eli’s current age range is the most critical time for intervention, and the specialist suggested to us that he needed 40 hours of applied behavioral analysis therapy a week, two hours of speech therapy, and two hours of occupational therapy; where were we going to find the time to fit in this much-needed therapy? And then there is the finances – the idea of 3-4 co-pays a week made my husband feel sick. Oh and by the way… we have two other babies who need us just as much. The worry and concern was overwhelming. But in spite of all our unknowns, we always had one thought in mind: we have to do this, all of this, , and do it right to give him the best shot in this world..

And that is how our journey began,  with hope, lots of worry, but more than anything, with the strength and love of our Lord Jesus Christ. For me, this is crucial. I have hope because of God. Yes, I get overwhelmed on a weekly basis, but at the end of the day I know with whom my hope is in.

We don’t know what the future holds for our beautiful boy, but we know who holds our future. I take great comfort and peace in that. All we can do is try our best, work like it depends on us, and pray like it depends on God.