ask and you shall receive

Earlier this week I had a meltdown and consequently went on a mission to demand answers as to why Cale was displaying some of the behaviors he had been showing over the last six months or so. My husband called the doctor, because I knew I would either break down in tears over the phone or sulk back into my timid and very non-assertive ways and agree to an appointment that was months out. He called on Wednesday and she agreed to see us today, Friday. I felt a sense of relief knowing that we were finally doing something proactive in search for our answers.

Cale has extreme reflux, or so we have always thought and I still continue to believe. He's had swallow studies performed and has been on the medication Prevacid since he was six months old. We've tried a handful of different medications but none of them have ever been helpful, even the Prevacid, but we were told that if he didn't take it the reflux would get much worse. So, under doctor's orders, he's been on it for over two-and-a-half years. Never once have I thought it cured, or even relieved, the symptoms he has shown practically since birth. As a baby he spit up CONSTANTLY. I remember feeding him tiny amounts at a time and then walking with him upright for hours, literally, in hopes of keeping his meals down. The instant I set him down he would spit up. Over time, when he was about eighteen months old, the spitting up subsided but the physical evidence of his reflux remained, even to this day. You can hear the acid come up in his throat and you can see him painfully try and swallow it back down. For the last six months I have felt that his reflux has gotten worse, but since this is all we've known throughout his entire life, I guess I kind of brushed it off as just another check mark on the list of sucky things he has to deal with.

Going back to my meltdown earlier this week, I finally became fed up with watching Cale have to live with something that interferes with so much of his day-to-day activities. I can't even read him a book without him jerking his entire body in order to keep his meals down. His fine motor skills are already compromised but when you add in the reflux it is almost impossible for him to control any part of his body. At times, the work of having to swallow whatever is coming back up knocks him off balance and makes him fall to the ground. What child should ever have to live with something like that? So, the call to the doctor came next and today we argued our case to look deeper into what might be going on in his little body since the medications were not working.

We got an answer, and even made a plan, but it was nothing like what I had imagined. I honestly thought we would go in there, give a description of what was going on, and then our pediatrician would refer us to a GI doctor and they would scope him and put him on a different, stronger medication. Our plan though, instead, is to travel to Seattle to see the GI doctor. There he will "prove" that Cale either does or doesn't have reflux. Despite his diagnosis, we will also travel to Spokane to see a neurologist. Our pediatrician thinks the episodes of Cale trying to keep the acid down are actually seizures.

Seizures.

Seriously?

I have a flood of emotions running through me right now but the only thing I can come up with to say is that this sucks. It's not enough that he was born premature and has undiagnosed developmental delays, but now we have to add on seizures, too? Seriously? I feel like I just got punched and I keep trying to get up but every time I do I get punched again, and again, and again. I hate this, I really do, and I would do anything to make it better. Now every time I see Cale trying to overcome what I thought was reflux, I am fearful that he is actually having a seizure. Is he having them at night when I'm not with him? That thought alone makes the hair on the back of my neck stand up and my stomach to twist in a series of knots. I don't want my baby boy to be having seizures. I want him to be able to enjoy being a kid.

I feel like I'm back in that place. That place where I don't want to go anywhere, I don't want to see anyone, and I don't want to do anything. I'm back in that place where it's emotionally difficult to be around normal developing children. I honestly hate being here but I don't know how to get out. I want to be happy and enjoy my children the way other moms get to enjoy their children.

It's ironic that just yesterday I chose to focus on a verse about how God made each and every one of us perfect and nothing about us is a mistake. We are wonderfully made. But today I find myself questioning God and wondering what His plans are for Cale. Why did He make Cale the way He did and why this week, a week I so desperately wanted to focus on the positive, have we been attacked with such negativity. My perspective is wrong, I know that, but I don't know how to change it.

How do you rejoice in suffering?

Psalm 139: 13-16

Psalm 139: 13-16

¹³ For you created my inmost being;
you knit me together in my mother's womb.

¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

¹⁵ My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

¹⁶ your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Today I am choosing to focus on this passage. I've always believed with all of my heart that Cale was not a mistake and that God made him the way he his for a very perfect reason, but it's nice to be reminded of this passage. It's a good one!

HATE to feel this way

Dear Cale,

Today I became very frustrated with you. I was so excited to show you the awesome coloring books and stickers I bought for you while you were at school. I thought for sure it would bring a huge smile to your face. I got frustrated with you because you weren't able to peel the paper off the back of the stickers. I got frustrated because you didn't understand that the sticky side had to be face-down on the paper. I got frustrated because you wouldn't accept my help. Once I realized I was frustrated with you, though, I became angry. Angry because you weren't able to enjoy the things I thought for sure would bring you joy. Angry because I was mad at you. Angry at myself for letting me be mad at you. Angry because inside I knew that you wanted so badly to be able to peel the paper off the back of the stickers yourself, and here I was getting frustrated with you because you couldn't. I saw you watching Riley do it effortlessly and I can only assume you were wondering why it was so much more difficult for you. I was mad that I had spent money on something you didn't seem to care about. I was just plain fed up with it all.

But then all of that frustration and anger turned into tears. I was embarrassed that you saw me cry but thankful that you didn't know the reason behind those tears. What kind of mom am I to lose control in front of you? What if you did know that I was crying because I hate the fact that you are disabled? I don't ever want you to know that I sometimes get sad when I think about why God made you the way that He did.

I wish I could stop time because I'm realizing that as you get older, you too are realizing your differences. You get frustrated easier and are harder to make happy. My little boy who screamed in delight over a simple sticker is slowly disappearing. How do I get you back? I would do anything to get you back.

I hate that you asked to take a nap instead of play with your coloring book. Since when did sleeping become more fun than playing? I hate that you shook your head when I asked if I could read you a book before nap time. I hate that my attitude reflected my frustration.

I felt guilty as soon as I put you in your bed and you told me that you loved me. Today I was not worthy of your love. I wish you knew how much I loved you and that I would do anything and everything to make life easier for you. You're only three years old and already you've faced more challenges than I have in my twenty-five years of life.

I hate that.

Perhaps a bit of bad news?

Cale has been "walking" for almost two months now. I am putting the word walking in quotation marks because he only uses this form of transportation during situations he is comfortable in. He walks around our house pretty well but even then sometimes chooses to "knee-walk". I would say he uses walking as his main form of getting around 50% of the time. This in and of itself is to be celebrated and praised from the depths of the earth to the highest of heavens considering doctors were not even able to tell us with certainty that he would be able to walk. Walkers, crutches, and wheelchairs were always on the forefront of our minds. Never once did we allow ourselves to expect the best, because time and time again, Alex and I were always left discouraged, disappointed, and sulking in a dream that, yet again, had been lost.

Today, during one of Cale's regular speech therapy sessions, I finally asked his therapist a question I had been withholding for over a year. I asked if she thought and could predict, based on the high number of kids she has treated , if she thought Cale would ever be able to talk. She lowered her head, sighed, and looked straight into my eyes and told me she wasn't sure. She had treated kids, like Cale, that ended up being verbal and also treated kids that never learned to talk. My dream of hearing Cale SAY "I love you, Mom!" was instantly crushed. Cale being able to communicate with his friends was all of a sudden a far distant hope. A mother never, ever, in a million years wants to hear that her son will never be able to express his dreams, his wants, and his desires. How frustrating to him that must be. I should have never asked and just believed that God is capable of ALL things and even triumphs the most knowledgeable and credible doctors.

One thing, though, that is always constant and present in Cale's life, is that he is smart, determined, and one that fights against all odds put against him. No one ever thought he would be able to walk independently, and look at him now. For now, no one thinks he will ever be able to talk, but I choose to put my hope in God and believe that with Him, all things are possible.

Pueblo Bonito Resort and Spa

I've been holding off writing about this because when we first booked our vacation it seemed like FOREVER away, but we are officially within almost a month of leaving and I simply cannot withhold my excitement any longer!

Alex. Me. Thaiv. Crystal.

The above mentioned people used to be a group of four very good friends. Alex was in Thaiv and Crystal's wedding and both Thaiv and Crystal were in our wedding. We used to be able to call each other up on a Friday night and spend countless hours arguing over what we were going to do. Movie? Game night? Go out to dinner? The world was our oyster! We took spontaneous trips to Big Sky to ski and quick trips over to Spokane to see concerts. We even took a five day cruise with them down the Baja. But then one day Thaiv and Crystal decided to go ahead and get themselves pregnant. Five months later and whoops, Alex and I were pregnant, too. Over the course of three years we went from a quiet group of four to a very loud group of eight. Thaiv and Crystal now have two kids and we, of course, have our two. I can't imagine my life without all of our children in it because I love them all to death, but I can't recall the last time the original group of four friends was able to go out and enjoy themselves without a child attached to one of our hips.

Well, that day is arriving very, very soon! On February 23 we will take to the skies and head for Cabo San Lucas, Mexico!!! Although each of us is anxious and hesitant in our own specific way about leaving the kids for an entire week, I'm pretty sure all of us are bursting inside with cartwheels and flip-flops.

Crystal and I are planning a day to ourselves before we leave to get pedicures, waxed, and tanned (spray tan, not skin cancer), and hopefully the guys will follow suit and at least get a spray tan with us. I'm not entirely sure I feel confident in a bikini at the moment but hopefully we'll be having so much fun that I won't even remember to care. :)

Anyway, so that's what I have to look forward to in about a month! Mexico here we come!

Oh, and did I mention that I am terrified beyond belief of flying? I shed tears on the airplane that get me weird glances from strangers wondering what on earth could be wrong with me. The last time I flew anywhere with Thaiv and Crystal was when we flew down to CA to board our cruise. As we were standing in line waiting to be boarded, Thaiv looked outside at our airplane and said, "Erica, is the wing supposed to look like that? I don't think it's supposed to look like that. Something must be wrong!" I immediately burst into tears and nearly stayed back in Spokane. If Thaiv knows what's best for him he better not make any comments about the safety of our aircraft.

It's not about me

At least once a month I meet with a group of moms that all have children with special needs. A few nights ago we met up to have dinner and chat about life. One of the moms referenced a quote from the book, The Purpose Driven Life: "It's not about me." She was putting it into the context of how sometimes she feels guilty for being sad that she has to go through the experience of having a child with a disability. She believes it isn't about her and despite trying not to make it that way, selfishness always finds a way to creep in. We finished the night eating way too much dessert and then I drove home, not really giving a second thought to the idea of it "not being about me".

I believe in an earlier post I admitted to not crying about Cale in a long time. Life had been pretty good and Cale was making progress. My efforts to keep the positive on the forefront of my mind must have been working because I hadn't had a reason to be sad in quite some time. For whatever reason, though, last night I broke down in tears. It honestly surprised me a little and I felt awkward crying in front of Alex. I didn't want him to see me like that, weak and broken. Cale also saw me crying and I can't help but wonder if he knew the reason behind my tears.

I can't really pinpoint a specific event that all of a sudden made me so sad. Yesterday, both Cale's teacher and his speech therapist commented on how hard of a worker he is. They continually praise his determination and patience. Cale has to work for everything, from something as small as stacking one block on another, to maintaining his balance while remembering to move one foot in front of the other, making step after step after step. Things that other kids don't even have to think about Cale has to give all his concentration and attention to. The praises he receives from his teachers make me happy and so proud, but they also put a lump in my throat as I try to not be sad that Cale has to work for everything. Simple play is work and I can't help but be sad that his childhood will never be normal or easy. Some of my tears were for Cale, wondering if he's beginning to understand or question why he's not like the other little kids.

The rest of my tears, though, were feelings of guilt pouring down. It's hard to know if I'm a good mom and if I'm being the best advocate I can be for my son. For instance, I'm used to Cale getting pushed around and having toys grabbed right from his hands. Even normal kids experience that. I'm used to watching Cale chase hard after a group of kids, only to reach them and have the kids turn right back around and run a different direction. Cale never gives up, though - he'll continue to follow them. I'm used to watching Cale look at other kids, knowing that he's wanting to be able to do what they are doing. I even see that as he watches his sister. I'm used to Cale getting frustrated when he realizes he needs help. Last night, though, he was on the floor walking around on his knees. A child in one of those Fisher-Price cars ran right into him. Cale fell face-forward and the child continued to move over him until half his body had disappeared under the car. As I watched and looked for Alex to come swoop him up, Cale awkwardly tried to get up, and once he was free, he didn't even cry. He simply moved out of the way. Unless Cale gets hurt, he doesn't cry when other kids do things to him. He doesn't cry if someone pushes him over or takes a toy away from him. He doesn't cry if kids run away from him and he can't keep up. He doesn't cry when he realizes he can't do something on his own. He doesn't even cry when he gets run over by a toy car.

Is this a sign that Cale simply accepts being who he is? Or is it a sign that I'm not protecting him enough and he's gotten to the point where he thinks he deserves to be treated this way. I don't know where the line is between being an advocate for my son and being an over-protective mother. I want Cale to be tough and learn to stand up for himself, but he's not doing those things for himself and so I can't help but wonder if it's me that needs to stand up for him. Parenting a child with a disability and knowing what's right is so incredibly difficult. But it's not about me and as I think about why I was crying, I'm left wondering what it looks like to have it not be about me. What does that even mean and can it help me try and sort out the right and wrong in raising Cale?

Some things are way beyond my understanding

Christmas came and went. My parents' beloved pet, Roxie, escaped from our house on Christmas day and after hours of searching for her, we learned she had been hit by a car. Losing a pet on Christmas kind of takes the joy out of things. New Year's also came and went. Alex and I made it 'til midnight but once we toasted our glass of sparkling cider we almost had to drag each other up the stairs and boost one another into bed. My body is not made for staying up until midnight. We now begin 2010 not much differently than we ended 2009. Life keeps rolling along and I suppose we're just hitching a ride.

I truly do have more joy in my life than the prior paragraph may lead you to believe, but the course of some recent events has kicked me in the shins and made me realize that this world is a crappy place to live and some day, and only until then, will I be able to live in complete peace, void of any and all suffering. The birth of a new baby girl makes me question yet again why suffering is allowed and what sort of plans God has for the suffering He allows us to go through.

My friend's sister and her husband gave birth to a baby girl on December 23rd. After from what I understand was a healthy and normal pregnancy, this baby girl was delivered and not breathing. Rushed to the NICU with her parents only allowed a glance at their new, precious baby girl, doctors determined that she could not breathe on her own and was unresponsive to anything going on around her. This baby girl can not suck, move her arms or legs, and possibly not even be able to see. Full-term and with what seemed like no complications during her pregnancy, why is this happening? Doctors believe the baby girl, Lydia, was deprived of oxygen at some point which lead to significant brain damage. The parents have had to make incredibly difficult decisions, one being whether to let their baby live or to let her go be with her Father in Heaven. So far they have chosen for the doctors to do everything they can to let her live. I know of two surgeries she's already had to undergo and who knows how many more could be to follow.

My heart just breaks for these new parents. Here they were, spending nine months anticipating the arrival of their first child, getting excited and preparing the nursery. Waiting during those last few days in complete euphoria of knowing they will soon get to meet the baby they have been waiting so patiently for. They were probably getting excited to be able to bring her home in time for Christmas. What a perfect Christmas present! But now, days into the New Year and Lydia is in the hospital, tubes and wires connected all over her body, helpless. Her parents did not get to bring her home for Christmas and not only that, but the child they had dreamed of is not the child they got.

"Dreaming New Dreams" is the title of my blog and it was for this very reason I decided to name it that. Alex and I were forced to dream new and different dreams after Cale was born and we realized he wasn't the normal baby boy we thought we were going to have. Our situation and the situation my friend's sister and brother-in-law are going through are completely different and I don't dare try to compare our experience to theirs, but I do know how they are feeling at least on some level. The fear, the shock, the "why us", the disbelief that this is actually happening are things I definitely experienced and assume they must be, too. However, I believe God protected my heart during Cale's birth and the two months he spent in the hospital, because I look back at those days and wonder how on earth I got through them without being in tears every single day. I was even able to smile and be joyful. I know it was God protecting my heart because I should have been a complete wreck. Don't get me wrong, there were days when I was and those days were really tough, but God was definitely looking out for me. I pray He is doing the same for this family.

The verse that has always come to mind, even when I was driving home after Cale was diagnosed with cerebral palsy, is Jeremiah 29:11, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." I believe this verse applies to us all, even to Cale and baby Lydia. God has great plans for the both of them and will use them to help bring glory to His name.

Please pray for Lydia and for her parents. I can't imagine the fear in their hearts but I do know we have a great God that is capable of great things.