Saturday, December 3, 2016

Why I share

I never know how much to share on Facebook or this blog about our life as a special needs family. I am pretty open about the highs and lows, and I try to highlight the highs. When I point out the hard things or the different aspects of our life it isn't because I want people to feel bad for us. Our life is really good. My children don't fight. I witness miracles in the ordinary. We celebrate the mundane.
But I point out our differences, our struggles and our sadness to promote understanding, to educate, and to start conversations that might lead to positive changes.

It is hard to still be working on skills that other kindergarteners mastered years ago. Our potty training journey has not been typical, so commiserating in those conversations with friends is slightly awkward. Meltdowns have decreased, but there are still things, often unknown, which can cause frustration,anxiety or sadness for G. And we are just now really beginning to see how much life is different not only for our son with CP and autism, but also for our neurotypical som as well. My child  with special needs has many adult "buddies," but few peer interactions. It is hard for kids his age to want to talk to him because of their age and his needs. The Hubs and I will likely never have an empty nest, so whe friends joke about counting down till their kids leave for college it is hard to laugh.

This doesn't mean I want our friends to censor their conversations, walk on eggshells or force their children to be friends with mine, or even make sure that G is included in every activity. He can't do every activity due to limitations or lack of interest. We have been so fortunate to have friends invite us to birthday parties (we can't always attend), to greet him with a smile and hello and patiently wait for a response, and a church that is willing to make accomodations in classes and activities.

I share what our life is like because I believe we are meant to bear one another's burdens. My son is not a burden, he is a joy and delight. But the obstacles and issues we face can be burdensome. We were not created to do life alone. I share because awhile ago a dear person ahead of me in this autism journey blogged about their life - not just autism but the regular stuff, too. It was such an encouragement to read even before I was an autism mom, and especially after I became one. Maybe my sharing can encourage someone just starting on this path. We all need encouragement and prayer and support during different seasons. And the amazing thing about sharing the needs that we have is that we also get to share the celebration of the milestones and miracles we see.

Our family most likely doesn't look like most. We laugh, we cry, we go to a lot of appointments, we learn, we advocate, we play Trouble almost every night. We are exactly like you, yet we are nothing like you. We want to be noticed and yet we want to blend in. We long for God to show up in big ways, and we covet your prayers for Him to keep faithfully answering the smaller ones, the ones we do not even know how to pray yet.

"Jesus answered, 'This happened so that the power of God could be seen in him.'" John 9:3 NLT

Sunday, November 27, 2016

Advent - hope

Dear C and G,

Today I set out the candles in our temporary house. I couldn't find more than two that coordinated, so I found four different candles and set them in a platter. They are each labeled with one of the Advent words - hope, love, joy, peace. I never remember which order they are supposed to go in, and when I search the Internet to find out, I am given a couple of different options. But we start with hope.

Advent comes every year and serves as a reminder of the need to anticipate and the need to hope. We remember when the nation of Israel was waiting for the Messiah and the world was lost in sin and darkness. Advent reminds us of the waiting then, and it reminds me of the waiting now. Jesus came bringing hope because He brought the good news of salvation. He went away, but He promised to return and to give us a new heaven and a new earth. When we think of hope during this season, we remember the hope He has given us - a way to know Him and fully rest in His victory over sin - and we also hope for the day that has yet to come.

We cling to the hope that He will one day make all that has gone wrong right. We cling to the hope that there will one day no longer be autism or cancer or abandonment or violence. The world is still dark, but we know that the light has come and is coming again. We light a candle to remind us of that hope, that truth, for those of us who trust in Him for salvation.

I pray that just as Peter wrote a suffering and persecuted church, that you would prepare your minds for action and be sober-minded and set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ. I pray that your hope wouldn't be in a political system or a well-rounded eduction or even your own abilities or personality, but that your hope would be in what Jesus has done for you. Rest in that grace, rely on that truth, put your hope in His promise.


1 Peter 1:3-13 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls. Concerning this salvation, the prophets who prophesied about the grace that was to be yours searched and inquired carefully, inquiring what person or time the Spirit of Christ in them was indicating when he predicted the sufferings of Christ and the subsequent glories. It was revealed to them that they were serving not themselves but you, in the things that have now been announced to you through those who preached the good news to you by the Holy Spirit sent from heaven, things into which angels long to look. Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ.

Saturday, October 15, 2016

To Bubby, who has been seven for quite a while now

Dear Bubby,
I have drafted this letter several times now, always meaning to sit down and write the whole thing. Yet, here it is October, and I am finally writing it. It isn't for lack of love or motivation, but lack of brain power once I get you and your brother to bed.

You are seven now. We celebrated at the end of spring with pizza and bowling with just a few friends from Sunday school. I brought Star Wars plates and masks, and it was delightful watching you have such a good time with your buddies. They are good friends to you - both the boys and their families - and I pray that in each season of your life you will have friends such as these.

You are reading chapter books, and you devour Beverly Cleary and Roald Dahl stories. I love that you love to read some of the things I once loved. You pick out audiobooks for the car, and we listen to them at least every Thursday, sometimes more often, and sometimes you bring them inside for free time. You played basketball again last winter, and I could tell the difference a year makes. I wonder what we will see this year. You have decided soccer is not the sport for you at this time, and that was a good conversation you had with me and Daddy. You like thinking about inventions and things you will create some day. You like building your Lego sets and then you like taking them apart. You love Star Wars, and I think the highlight of your year was when Daddy surprised you with a trip to the movies to see Episode 7 - just you and him. You saved your money and bought the DVD when it came out. I have lost track of how many times you have watched it.

You are a good brother and a good friend. You are patient with others, even with your parents. You are quick to forgive. You are good with little kids - your new cousin and our preschool friend. You are tenderhearted, and I hope the world never steals that tender heart away from you. You ask questions all of the time. All of the time. You are often silly, but you are also a deep thinker because some of the questions you come up with baffle us.

We have watched you grown in height and wisdom and age this year, but we have also watched you grow spiritually. You came to faith, and the Lord continues to grow that in you. You are interested in missions, and I pray that if that is the path Jesus has for you, that I can continue to entrust you to Him, no matter where that leads.

I am sorry this letter is late, but I know you understand. You see the day-to-day stuff of our lives, and I am so glad you are a part of it. I am so thankful for the seven-plus years you have been with us, and I am looking forward to the adventures ahead.


Friday, August 5, 2016

No Good Thing Does He Withhold

I think it will be the hand of God if we are able to sell our house before we move. I don't say this flippantly or irreverently. I say this as a person who rejects prosperity gospel theology, but who wants to believe in the God who sees - who sees every need, every stress - and who cares about the little details of our lives.

Because my earthly father withheld so much from me, I often to default to assuming God the Father operates in a similar way. He does not. "No good thing does He withhold from those whose walk is blameless." Too often I am tempted to believe He shouldn't withhold healing, He should take care of my wishlist, He should want what I want instead of it being the other way around. I point out all the ways I have given, sacrificed, and am worthy of His blessings forgetting that all my "goodness" is nothing but filthy rags. 

"No good thing does He withhold from those whose walk is blameless." This line from Psalm 84 isn't for me to remind God that He needs to give me stuff. Instead, last night the Holy Spirit use it to remind me that because of Christ, I am counted as blameless. Because of Christ, He has given me that which is good - forgiveness of sins and the hope of heaven.

There is a voice whispering to me to question God's goodness, to attempt to exploit His promises, to compare my blessings and struggles and good works with everyone else's, to assume that God owes me. Instead I must choose to say, "I will trust You, God. I will trust You in every circumstance because You are with me and that is enough. When I am discouraged, tired, and weary, help me to rest in You."

Sunday, July 10, 2016

Nine Months

Over the last couple of weeks The Hubs has applied for a job, interviewed for a job, been offered a job and then accepted that job. Starting some time in March our family will be moving to Tucson, Arizona, for The Hubs to begin working as a psychiatric nurse practitioner. He posted this news online for us the other day, and we have been blessed with kind words, well wishes and a few questions.

Why March? Well the simple answer is because that is what his future place of employment said. The reason behind that is because The Hubs graduates in December, and it is after that he will take his licensing exams and then wait for all of the paperwork process in getting licensed.

Why Arizona? Arizona is a good place for NPs to work, Missouri is not. Also, we both hate snow and ice. We do not get much snow where we currently live, but we do get ice on unplowed/unsalted roads. The Hubs is from California, and I lived in Arizona for two years right after college. I prefer July in the desert to January in the Midwest. We have been about a seven hour drive from my family for the last eleven years; now we will be about seven hours from The Hubs' family. Also we will be closer to In-N-Out and Disneyland. Arizona is a homeschool friendly and second amendment friendly state, which were also factors in our decision making process.

Do you know anyone in Tucson? I know one family in Tucson - they were pastors I met in Venezuela when I went to Venezuela. I have family friends in the Phoenix area, and some teacher friends still in Yuma.

We have nine months to prepare to leave, which we and others note is like a pregnancy. Of course I have never carried a baby to full term, so I don't actually know what it is like to wait nine months for something!

In all seriousness, please pray for us over the next weeks and months. This was not a decision we made lightly, and though we are excited that The Hubs has a job in a state we actually would want to live, Missouri has been our home for eleven years (me for fifteen total).

I have already cried three times at the thought of leaving our church. It is not a perfect place (no church is), but we came to our church three and a half years ago disillusioned and hurt by a past church experience, and we have experienced such love, discipleship, and friendship at our church. It will be especially hard to uproot our boys from such a place where they have been taught, cared for, cheered for, and poured into. Please pray for both C&G as we transition in the spring. Pray for us to find the right church for our family, and for meaningful new friendships for all of us. Pray that G would understand and adapt to changes and for C's nervousness and sadness about the months ahead. Pray for me as I investigate church possibilities via the Internet. There were several to look at thanks to The Gospel Coalition directory.

Please pray as we try to get our house ready to sell. I already have some things checked off the list, but there is much to do. Pray for good time management as we fit the extra chores in around work, school, clinicals, homeschooling, therapy, etc. Pray the house will sell at just the right time at the right price - preferably before March.

Please also pray for the paperwork and other "research" I have to do, especially in light of all of G's physical, social, medical and emotional needs. Pray we find the right doctors, therapists and other support systems in Tucson.

There is much still to do with just living and enjoying life while we are here. I look forward to doing a better job catching the remaining lightning bugs this summer and admiring the autumn leaves, as well as rejoicing that this is my last Midwest winter. But knowing how I am, all of that will be done in between a lot of tears because I would put up with ice storms and tornado warnings any day for the friendships we have been given in Missouri.

Saturday, July 2, 2016

The light

The light at the end of the tunnel is starting to shine a little more brightly. We are less than six months  away from graduation, and the weeks after that will be the licensing process for The Hubs to become a psychNP. The job hunting/interview process has already started, and we are facing decisions of where do we want to/need to move?

We knew we would probably have to move away from here. We have tried a couple of different times before, but it never quite worked out. So in my mind I think I felt like we would always be here even though that was never the original plan. Originally the plan was to live here for about five years. This summer marks eleven years, and if you count my four college years, fifteen years.  I have lived here almost my entire adult life, except  for those two years when I up and moved to live all by myself and teach in a random town in Arizona.

Moving wasn't that scary when I was twenty-two. But now it isn't just me I am thinking about - the big picture is me, The Hubs, and our two kids. On one hand an adventure and a fresh start somewhere that doesn't have snow sounds exciting and wonderful. Yet on the other hand it sounds terrifying and exhausting. Will my kids make friends? Will we find a good church? Will The Hubs like the place where he works? What is the right place for us? Will I be able to homeschool and get Bug to his therapies and get this house ready to sell? That last question makes me want to go eat a tub of ice cream and take a nap.

God's grace and provision has been enough to sustain us these last eleven years (well even more so these last thirty-five.) I can look back and see how He has ordained each and every step, even the painful ones. Through each trial and each success, every loss and every blessing, He has continued to draw me closer to Himself and strengthen my faith. Sometimes I feel weary of my faith needing to be strengthened. But I will trust Him. I will trust Him with all of the uncertainties, and I will trust Him if the light illuminates the next step or if it does not.

Sunday, April 10, 2016

For Siblings' Day

On Thursday afternoon we took a last minute visit to our little local zoo.  We saw the giraffes first, at Bug's request, and then spent some time in the snake building for you. Because we didn't make it to the elephants last time, we hiked to the far end of the zoo, and then the crying started. Nothing we did worked, but you remained calm while I wiped up tears and a runny nose. You said things that are your inside jokes with your brother, but they did not work, and so you knew we would have to leave.

I watched you calmly leave the zoo, even though it took forever to get back to the front and then to our car. Once again, you did not yell or cry or tantrum, you just held my hand as we looked both ways, and you settled for a scoop of ice cream as a consolation prize. And although you were a little more upset when something similar happened at the circus the next night, you still did not take your disappointment out on your little brother.

You teach me every day what it looks like to be an above-and-beyond sibling. I am only an average sister, on my best day. But you are gracious and loving and kind. You have a friendship with your brother that I can only partially understand. You push boundaries with your dad and me, as every child does at almost-seven years old. I am still figuring out how best to guide and disciple and encourage and correct you. But I rarely have to correct you in your role as big brother.

So on National Siblings' Day and Autism Awareness Month, I wanted to let you know that I see you. I see your strengths and weaknesses, I see the gift you are to our family, I see all that you are learning and what you are still figuring out. I hear you ask your deep theological questions about God's will and autism, and I hear the faith that you have when you say, "One day when..."

Bug has told you all week this week that you are his best friend, and that you two are the best boys, and what he said is true.I know you hear your little brother say that he loves you. I just wanted to remind you that I love you, too.