A Prayer-Filled Purpose for Christmas Cards

When I had the genius idea to do the SB Christmas Card Exchange, I had already decided that I wouldn't just toss all those cards received after the holidays were over. My SB family is, just that...family. I knew I wanted to keep the cards. I stumbled across this idea of creating a "book" as a way of keeping all the cards together. So, I made my own (using the template located on the link above).

So cute right?

(click the link above to download)

I had another idea. I wanted to pick a Christmas card at random and then pray specifically for that person/family for a week. I received about 57 cards this year so I'll pick a card (randomly) each week for the rest of the year, I'll have to double up a few times since I have more than 52 cards. I thought this was such a great idea and it turns out I'm not the only smart person in the world because a couple of days ago I read this post. This family started using their Christmas cards as a way to have purposeful prayer for a specific person/family. I know that prayer is something I struggle with. I don't always take the time to specifically pray for others. And I'm not likely to pray for someone or their family unless I know a specific need they have. By choosing a new card each week I'll have the opportunity to pray for a family just because. Once I draw a new card at the beginning of each week, I'll probably let the person/family know that I'll be praying for them all week and to let me know if they have any specific prayer requests. I'm really excited about doing this. I wanted a good location for the card so I would be reminded several times a day to pray. So I made this:

It's just a simple frame I made using scrapbook paper, ribbon and some letters I already had. I put magnets on the back to I can stick it to the fridge. Every week I'll put the Christmas card in the frame. Let's face it, I go to the fridge about 63 times a day so there will be a lot of opportunity for me to pray. I just love this idea. I'm excited to see what develops by doing this.

I encourage all of you reading this to do the same thing. Who's with me?

"7 Lessons from the community of disability"

I just wanted to share something that I read on another blog.  I started following this blog after I read the author's (Greg Lucas) book: "Wrestling with an Angel, A story of Love, Disability, and the Lessons of Grace".  You can read about my thoughts on this powerful book by clicking here.  Anyway, he posted the following "7 Lessons" on his blog recently and I wanted to share it.  It meant something to me...so I thought it might mean something to some of you. (Warning: it's kinda long)

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.

While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.

1. God is both sovereign and good.When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth.(Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

2. You have been brought into this community for a purpose.
I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.

3. Disability magnifies our vision for joy in the smallest things.Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.

4. Community brings much needed perspective
As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.

5. Outspoken men are often minorities.
While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place.

It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.

Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical.
I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se).

I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.

Worthy of Life

I am a member of this wonderful group on BabyCenter called "Spina Bifida Kids".  This online group is for parents who have a child or are expecting a child with SB.  There are well over 700 members in this group.  It is a wonderful community, full of parents who are more than willing to encourage and support each other.  We share the same journey.  We cry together.  We rejoice together.  We know all the SB lingo.  No explanation needed.  We are family.  At least once a week, maybe twice, a new member joins our group.  Not because she wants to be a part of our group but because her baby has just received the SB diagnoses.  She has just been told that her baby has Spina Bifida.  Immediately fellow members reach out to her with words of encouragement and the truth.  Many times these newcomers to our group have been told some very horrible, terrifying things about their baby.  They have been painted a very grim picture.  They have been lead to believe that their child, this baby that they love, will have no quality of life.  This comment was posted just today:

"We were told that she will not be able to walk.  At best we could hope for her to be able to transfer from bed to chair when she got older; however, due to the lesion being at L1 that was not looking too good either.  We've been told she will more than likely have MR (mental retardation)...."

I was absolutely heartbroken when I read this.  And this is just one of many examples I see on a regular basis.  The parents of this unborn baby girl have basically been told that the most their daughter will achieve is being able to transfer from her bed to a wheelchair.  That's it.  That is all there is to hope for.  Really??  The baby isn't even born yet and these predictions are already being made.  It is ridiculous and absolutely infuriating.  There is no way you can tell what a child is capable of just by looking at a sonogram halfway through a pregnancy!  A doctor has no right to make these statements.  I have no idea if this particular family is considering termination, it wasn't mentioned in the post.  However, based on what they have been told about the quality (or lack thereof) of their baby girl's life I wouldn't be a bit surprised if termination wasn't "offered".  When Glenn and I were told that Caleb had SB, we were told very similar things to what this family has been told.  

We were told that Caleb wouldn't walk.

We were told that he would be "mentally retarded" (doctor's exact words)

And we were offered termination more than once and told that we needed to hurry because I was approaching the cut off date for an abortion.

Another mom joined the BabyCenter group this week.  She has just been told that her baby boy has SB.  She is "considering" termination.  Breaks my heart.  I cry for the babies that are never given a chance.  I cry for the parents that feel like termination is the right choice or the only choice they have.  I cry for the parents that choose termination because some moron doctor has given them false information.  I am always so thankful for the parents that come to the BabyCenter group because we rally around them so quickly.  We share our kids with them.  We show them how wonderful our children are and how worthy they are of a chance at LIFE.  We tell them the TRUTH.  No, SB is not easy. It is not a walk in the park.  It really stinks sometimes.  But our kids are amazing.  They are rock stars!  They touch lives and change lives.  This world would be lacking without them in it.  They are deserving of LIFE. 

Caleb is worthy of LIFE.

And another thing, why is a wheelchair seen as the worst thing imaginable?  Why does a child needing a wheelchair mean that they will have a poor life?  Is our value in our ability to walk!?  Let's remember that all of us, everyone on this planet, is one car accident or one stroke from needing a wheelchair ourselves.

Caleb's worth is not determined by his mobility.  His worth is in the fact that he was created by God.  It doesn't matter how he gets from point A to point B.  I care about Caleb's heart.  His character.  His moral compass.  I want him to know Jesus, to love Jesus, to live his life for Christ.  I care about the eternal, not the temporal.

Caleb is worthy of life.  SB doesn't take away the value of his life. My hope is that this blog, and other blogs like it, will continue to redefine Spina Bifida.  I fully believe that the Spina Bifida Kids group and blogs have saved lives.  I know that there are babies with SB that were given a chance at life because their mom or dad signed into the BabyCenter group or somehow stumbled upon a blog that showed how wonderful these kids are. They are all worthy of life.  

Now if we could just get these medical professionals to visit our blogs so that they could see what Spina Bifida looks like because most of them don't have a clue!

Playing Hurt

I actually posted this on my other blog last week but for some reason I had it on my heart to post it here as well.  So here goes:

This past Sunday my pastor did a sermon titled: Playing Hurt.  He used football as a metaphor for our walk with God.  A football player that truly loves the game will play even when he is hurt.  He will push through the pain because he has a love for the game.

A Christian that truly loves Christ will stay in the game.  We will follow Christ regardless of our circumstances, regardless of whether we are hurt.

We have to learn to play even when we are hurting physically.

and

We have to learn to play even when we are hurting emotionally.

I thought of my first pregnancy loss in August of 2007.  I had to have a D&C.  I was in quite a bit of pain following the procedure.  Two days after the D&C my oldest son, Caleb, got really sick.  Scary sick.  He had a 105 temperature, vomiting, lethargic, it was awful.  We had to take him to the ER where he was diagnosed with a kidney infection.  We spent 4 days in the hospital with him.  And I remember how I just didn't want to deal with all that was going on.  I was in pain physically.  I was angry at God for allowing me to go through the pregnancy loss and then to allow my son to be so sick.  I was in pain emotionally.

Two months later I got pregnant again.  I was cautiously excited.  We saw the heartbeat.  I was thrilled.  And then 3 weeks later the heartbeat was gone.

Another loss.

Another baby gone.

Another D&C.

I was devastated.

I was furious.

Why in the world would God allow such a thing?  Really?  Wasn't it enough that my first son was born with Spina Bifida?  Now I had lost not one but two babies.  Didn't He know what I was dealing with?  Didn't He know how much I was hurting?  Physically and Emotionally?

I'm going to be honest and admit that I didn't talk to God for about a week after that second loss.  I just couldn't bring myself to go to Him.  I knew that I needed Him more than ever but I was angry.  I was hurt.  I felt like He had pulled the rug right out from under me.  I didn't want to open myself up to any more pain.

I soon went back to God.  

Back to His word.  

Back to what I knew I needed.  

Back in the game.

But not everyone goes back.  Not everyone stays in the game.  Some people choose to turn their back on God when the going gets tough.  I think we want to believe that being a Christian means smooth sailing.  That God will stop all pain, all suffering.

Nowhere in His word does He guarantee us a life without suffering, at least not this side of heaven.

In fact, the word is very clear that as long as we are on this earth, we will go through pain.

"In fact, everyone who wants to live a godly life in Christ Jesus will be persecuted."

2 Timothy 3:12

Read all the things that Paul went through:

"I have worked much harder, been in prison more frequently, been flogged more severely, and been exposed to death again and again.  Five times I received from the Jews the forty lashes minus one.  Three times I was beaten with rods, once I was stoned, three times I was shipwrecked, I spent a night and a day in the open sea, I have been constantly on the move, I have been in danger from rivers, in danger from bandits, in danger from my own countrymen, in danger from Gentiles; in danger in the city, in danger in the country, in danger at the sea; and in danger from false brothers.  I have labored and toiled and have often gone without sleep; I have known hunger and thirst and have often gone without food; I have been cold and naked..."

2 Corinthians 11:23-27

Paul was a man living his life fully for Christ.  And look at all the things he suffered and endured.  He had plenty of opportunities to quit.  To say: "Ya know what, I've had enough. I'm done with this whole thing."

But he stayed in the game.

Jesus said that the most important commandment is to:

"Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength."

Mark 12:30

Those that choose to quit when life gets rough never loved the Lord the way Christ tells us to.

Love for God is what keeps us in the game.

While we will experience pain physically and emotionally there will be a day when God will wipe away every tear and there will be no more pain. (Revelation 21:4)

Left wondering....but still at peace

Well the Spina Bifida community is all abuzz right now.  Most of you reading this know that the MOMS study is complete and the results are in.

For those of you that aren't familiar, the MOMS study was a clinical trial that looked at the benefits of in-utero surgery for babies with Spina Bifida.  Basically surgery was done to repair the opening on the back somewhere between 19-25 weeks of pregnancy.  The purpose of the study was to see if prenatal surgery on babies with Spina Bifida would lead to better outcomes than having the surgery done after birth.

Well the results showed that prenatal surgery does in fact help.

It helps in terms of mobility, children with prenatal surgery are more likely to walk unaided.

It also lessened the need for a shunt due to hydrocephalus.

The study is getting a lot of mainstream attention, which is great and very needed.  

Here are a few links you can check out:

NPR article

Diane Sawyer

Brian Williams

msnbc

I am going to be honest and say that I have mixed feelings today.  When we found out that Caleb had SB, I was about 18 weeks pregnant.  We heard about the MOMS study right away and we decided to pursue that option.  We filled out all the paperwork.  I had an amniocentesis because that was required by the study.  We sent over all the medical records.  We talked to a representative from the study.  I told my boss that there was a chance that I would be leaving work months earlier than I had planned.  We were all set to see if we would be chosen for the prenatal surgery.

But while we were making these plans, we never had peace about it.  It never felt like the right thing for us to do.  We were pursuing it out of a feeling of obligation.  That we should do whatever we could to help our baby.  It was a big deal to participate in this study.  It would have required me to be in San Francisco for several months.  And there are significant risks to the surgery.  But there was also the potential for great benefits.

Glenn and I did not have peace.  At all.

Everything in me said that this was not the right choice for us.  This was not want God wanted us to do.  

I remember getting ready for work one morning and Glenn and I were talking about the study and all of our fears and the lack of peace.  We then decided that we weren't going to go through with it.  And in that moment I felt peace rush over me.  I actually felt like smiling.  I was relieved.

I haven't given the MOMS study much thought in the past 5 1/2 years...until now.  And I admit that when I saw that the results were out, I hoped (just for a second) that they didn't find there was any real benefit to prenatal surgery.  I know that sounds terrible but it's the way I felt (briefly).  But the prenatal surgery does have benefit, it can and does help.  So now I am left wondering...what if.  What if we had decided to pursue the surgery?  What if we had been chosen for the prenatal surgery?  What if?  Would Caleb be walking fully on his own?  Would he have a shunt?  Would things be different?  I don't know.  I just don't know.  And I never will.  

I still believe we made the right decision.  I know without a doubt that God did not want us to be a part of that study. It wasn't His plan, at least not for Caleb.

I still have peace.  No regrets.

Now having said all that, I think this surgery is wonderful.  I think the potential is limitless.  I love that Spina Bifida is finally getting some much needed attention.  I love that there are doctors that have a passion and a desire to improve the lives of those born with Spina Bifida.  I love what this could mean for so many babies.  I think that it could save lives.  I picture parents finding out that their baby has SB and just maybe they would find hope in a prenatal surgery and just maybe this would result in less SB babies being terminated. 

And that is a very good thing.

I am thankful for the families that participated in the study.  I know that it was not a decision that they took lightly.  It came with great sacrifice and risk. 

If you haven't already, I encourage you to watch the videos.  It truly is amazing.  

Absolutely amazing!

Sanctity of Life

Every third Sunday in January our church (and many other churches) recognize the day as "Sanctity of Life Sunday".  Today was that day.  I know that I just made a post about Roe v Wade but the subject is still heavy on my heart so I'm going to post about it again.  It wasn't my intention to be judgmental of women who have had an abortion or of those that believe women should have the right to end a pregnancy if they want to.  And I don't approach this subject as someone who has never been in the position to choose.  I know what it's like to be 18 weeks pregnant, in love with the baby growing in me, and then to be told that my son had Spina Bifida and significant Hydrocephalus.  I know what it's like to have a doctor tell me that my baby will not walk, will not have normal intelligence, and may not even survive.  I know what it's like to have that same doctor offer termination multiple times.  I've been there.  Granted the choice was never really there, we never even considered ending the pregnancy.  But I get it.  I get why some parents chose to terminate when they learn that their baby isn't "healthy".  I think it's wrong, but I understand their fear.  Do I think it is easy for these parents to end their pregnancy when they are halfway through it.  Absolutely not.  I'm certain that they are absolutely devastated.  Their hearts are broken, I know because mine was too.  I don't think that most people take a decision like that lightly.  Not even for a second.  I also believe that many choose to terminate because their doctor gave them "doom and gloom" predictions for their baby.  I believe that babies could be saved if more doctors shared the good along with the bad.

I think abortion at any stage of the pregnancy is wrong.  Period.  Life is Life.  And all life has value.  I can't as Christian believe any different.  I don't think it is the woman's right to choose.  She didn't make that baby.  God did.  That is His creation.  He is knitting that baby together.  We have no right to destroy that life, for any reason.  I know that's not the politically correct way to think these days but it's how I feel.  I can't believe for a second that God thinks abortion is acceptable in any circumstance.  My pastor said something that really spoke to me today.  He said that God's word always trumps our opinions.

I know women who have had abortions, most of us probably do.  Some had abortions because they just flat out didn't want a baby, the pregnancy was a mistake so they ended it.  Some had abortions because they truly felt like they had no choice, they didn't want to terminate but people close to them backed them up against a wall.  And many end their pregnancy when they learn that their baby has a birth defect, or a medical condition, or a chromosomal abnormality.  I can't imagine that most women just forget all about it and never think about it again.  I think it hurts for years to come...maybe forever.  Maybe some would make a different choice if they could.  Maybe some wouldn't.

I don't think abortion will ever be made illegal again.  I believe it is here to stay.  Too many people want the right to choose.  Not enough of us speak up in defense of these babies.

53 million babies have been aborted since the passing of Roe v Wade.

53,000,000
 

38 years, not an anniversary to celebrate

My last post was a celebration of 9 years of marriage.  

Today's post is about another anniversary, one not worthy of any celebration.

Tomorrow marks 38 years since Roe v Wade, the day abortion was made legal in this country. 

I'm going to share something that I read on another site, The Works of God.  This site calls itself a "disability ministry".  I love the messages they share. 

"We joyfully live with a hard and glorious truth: God purposes disability in his creation for his glory and for our good."

In today's post the author discussed abortions due to birth defects or "fetal anomaly".  Here is a list of some of the diagnoses that often result in termination of a baby.  He got this list from the website of a women's center that performs "late abortions" based on "fetal anomaly"

"...we have terminated pregnancies for fetal abnormalities such as 1) Central Nervous System that include: holoprosencephaly, encephalocele, encephalomyelocele, hydrocephalus, Spina Bifida, holorachischisis, Dandy Walker, anencephaly, holoanencephaly, absence of corpus callosum; 2) Cardiac abnormalities that include: Primary Pulmonary Hypertension, Hypolastic left and right ventricle, holoacardius, tetraloy of Fallot, Eisenmenger’s complex, transposition of great vessels; 3) Chromosomal abnormalities that includes a) Common: trisomy 13, 18, 21, b) less common: trisomy 16, short arm and long arm deletions; 4) Skeletal abnormalities: Polydactyly, Achondroplasia, Osteogenesis imperfecta, lethal dwarfism, 5) Kidney abnormalities: Adult and Infantile Polycystic Kidney diseases, Potter’s Syndrome; 6) GI abnormalities: gastroschisis, omphalocele."

You can see that Hydrocephalus and SB are included in that list.  I couldn't find exact statistics but I've heard that 70-90% of babies with SB are terminated.  Never given a chance at life.  Never given a chance at all.  And it's not just SB.  I read this article today that states that 92% of parents terminate their pregnancy when they learn the baby has Down Syndrome. 92%.  And would you believe that babies are terminated because they have a cleft lip!  Breaks my heart.  The fate of these precious babies is determined by their diagnoses.  That's it.  That's all they are. A diagnoses, a disability, a birth defect.

"Disability does that in this culture – individual human beings created for God’s glory cease to be recognized as people, and the sum value of their lives is entirely defined by their disability. So, we eliminate a disability, not a person. But every one of those listed ‘procedures’ was done on a child, cruelly in the name of ‘compassion’ to prevent suffering in the child or the mother."

"Disability is hard; I certainly understand that. But we should not wrap what is happening to our unborn children with disabilities in the pretty language of compassion, either for them or for their mothers. Once again, the strong are making permanent decisions about the interests of the weak. And the weak are being destroyed."

 I just don't understand how we got to a place and time where this is acceptable.  Where this is a woman's right?  How did this happen?  Our culture, this world, is so messed up.  The hypocrisy is astounding.  Heaven forbid if we cut down a tree, or refuse to recycle but it is perfectly fine to end the life of a baby.

I'm sorry, I know I am on a rant right now but this upsets me so much.  It upsets me that doctors tell woman awful, terrifying things about their baby and then push them toward abortion.  We were told horrible things when we found out Caleb had SB, and we were "offered" termination at least 4 times.  I remember the doctor being shocked that we had no intention of aborting.  But many, many woman do terminate because of SB, or Down Syndrome, or cleft lip, or even because they just don't want a baby healthy or not.  Millions and millions of babies gone.

Here is the child that was supposed to be "mentally handicapped and severely disabled".  Um, I don't think so.  He is a beautiful, perfect, smart, sweet, funny 5 1/2 year old boy.  His name is Caleb.  He is the way God intended Him to be, because God does not make mistakes.  People do.  And even if Caleb turned out to be what the doctor predicted...does that mean he doesn't deserve life?

I don't mean any of this to be hurtful to someone who has had an abortion.  My heart breaks for the women who made that choice or felt like they had to make that choice.

I hate that so many women make the decision to terminate because of SB, likely because their doctor has told them horrible things, false things.  Is having a child with SB easy.  No.  But neither is having a child with no medical issues at all.

That's why this "Redefining Spina Bifida" movement (and it is a movement) is so important.  We can change the way people see SB and the people that live with it.  Go to the site to buy t-shirts, hoodies, tote bags, and more.  I tend to focus on SB because that is so very close to my heart, but ALL life has value.  Everyone has a right to life.  Period.  We have to start defending these babies that can't defend themselves.

On another note, I have decided NOT to make this blog private.  At least not now.  I hate the thought that a parent expecting a child with SB might miss out on seeing this blog, seeing how wonderful Caleb is, because I decided to go private.  I wish I knew about blogs like mine when I was pregnant with Caleb.  It would have made a world of difference.

A reminder of God's Grace

I just finished a really amazing book: "Wrestling with an Angel, A story of Love, Disability and the Lessons of Grace" by Greg Lucas.  It is a short book, only 100 pages, but it is powerful.  The author of a book is a father who has a son with some very significant needs.  I cried several times while reading the book.  It touched my heart.  I want to share some things from the book that really spoke to me.

I hear religious-minded people say all the time with good intentions, "God will never place a burden on you so heavy that you cannot carry it."

Really?

My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone.  He will break your back and your will.  He will buckle your legs until you fall flat beneath the crushing weight of your load.  All the while He will walk beside you waiting for you to come to the point where you must depend on Him.

"My power is made perfect in your weakness," He says, as we strain under our burden.

Whatever the burden, it might indeed get worse, but I know this-God is faithful.  And while we change and get old, He does not.  When we get weaker, He remains strong.  And in our weakness and humility, He offers us true, lasting, and transforming, and undeserved grace.

It is this grace that enables us to do more than survive in this world.  Grace enables us to thrive in the presence of this world's sufferings while magnifying the One who breaks us with affliction-that He might equip us with comfort, compassion, and strength to give to others. (page 14-15)

I used to think that God would never give me more than I could handle.  I have learned in the last few years that this idea is not true, and it's not biblical.  Nowhere in God's word does it say that Christians will have never face suffering, or trials, or pain, or sickness or heartbreak.  I believe that God often gives us far more than we could ever handle on our own.  It is during those times of pain that God is there to help us, and to even carry us when needed.

While reading this book, I really reflected on the last few years.  I believe I have faced some of the toughest trials of my life specifically in the last 6 years.  Everything from Caleb having Spina Bifida to losing 2 precious babies in 2007 and Benjamin's emergency arrival leading to a hysterectomy.  I admit that I was angry at God during these trials.  After my second pregnancy loss, I didn't speak to God for days.  I was hurt and absolutely furious that He allowed such a thing to happen.  I felt like the rug had been completely pulled out from under me when I lost the first baby and right when I was beginning to pick myself back up, I was knocked down again by the second loss.  And to be honest, Spina Bifida absolutely beats me down some days.  So I have those days where I ask: Why? 

I know He loves me and cares for me, but sometimes I cannot understand this strange affection.  What kind of love is it that brings so much pain into my life-especially from a sovereign being who has the power to make all things right.  And so, by nature, I resist the One who ultimately has designed all these difficult conditions for my good and for His glory. (page 18)

Have I allowed these trials to bring glory to God?  I wonder if I have.

The book isn't just about having a child with special needs, it is about humility and discovering God's grace during our trials, and even in our everyday life.

Truth is, you never know when or where the breeze of God's blessing is going to blow.  Grace is like that-unexpected, undeserved, and unpredictable. (page 27)

Grace, even in the small things of life, is never small grace. (page 29)


I absolutely loved what he had to say about humility.

Truth is, we are often so self-centered that we fail to notice the most significant and God-glorifying aspects of what's taking place around us.  We miss out on a lot of human joy and deep inner satisfaction because we are so tied up with personal cares.  But Jake (author's son) can shift my focus away from my superficial concerns and force me to reflect on what is most important.  As I am caught up in the reality of his limitations, I am reminded of how small and secondary most of my personal concerns really are.
Throughout the Bible, though, God uses weakness to define strength, and He uses humility to display greatness.  Whether it is a stuttering goat herder who takes on an Egyptian Pharaoh and leads a nation to the Promised Land, or a small boy slaying a sword-wielding giant with a sling and a stone, weakness is God's tool to shame the strong.  And when the King of the universe became a man-even the servant of men, laying down His life for the very sinners that spit in His face-humility displayed greatness like the world had never seen. (pages 32-33)

I got serious goosebumps on that last sentence.

I know this is a long post and I wonder how many of you will actually read this all the way through but I had to share my thoughts.  This blog is like a journal to me and this book impacted me in ways I don't want to forget.  I needed to read this book right now.  I have really been struggling lately and this book helped me work through some things.  My mind has been consumed lately with things that don't really matter in the big scheme of things.  I have this need to control and fix things...but I just can't.  I needed to be reminded of God's grace and the strength that only He can provide me.  I need to be reminded that He is in control and He is so much bigger than any problem, issue, crisis, or trial that I am facing.  I just see a few pieces of the puzzle but God knows what the finished picture looks like.  I am so lacking on my own, it is God that gives me what I need for the day.  I just need to be reminded of that from time to time.  It's easy to get in a routine and just strive to get through the day and forget that God is eager and willing to help me.  All I have to do is ask.

"It is the LORD who goes before you.  He will be with you; He will not leave you or forsake you.  Do  not fear of be dismayed."
 Deuteronomy 31:8


"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
(2 Corinthians 1:3-4)

Faces of Spina Bifida: Meet Aaron and Sarah! (Warning: LONG post!)

I've got a special family to share with you today.  This family has 2 children with Spina Bifida, one biological and one adopted from China.

This is Aaron

Aaron is 7 years old, he has an older brother Isaac and a younger sister Sarah (who you will also meet today).

Here is what Aaron's mom had to say about him:

"He currently plays Upward touch football, but would rather sword fight or pretend to be a Jedi any day of the week.  He is very talkative and friendly.  Often, when we are out, he will find someone to befriend.  He loves stories and surprises people with his very good vocabulary - He even surprises his mother!  Just a couple days ago, he explained to us what a scepter was!  He also loves animals of any kind."

Last year they decided to adopt a child from China and they chose Sarah.

Sarah is 4 years old. She has only been in their family for a year but when you are around her it seems like she has always been with them.  She just fits right in.

This is what mom had to say about Sarah:

"She loves music and sings all the time!  She is happy and loves everyone she meets.  She loves school, reading books and is curious and picks up on new information very quickly.  She really would like to have a cat, but has settled for Harriet, our little dog.  She also loves Dora, The Explorer and Kipper the Dog.  She really enjoys camping and riding her bike."

You can read more about the Steven's Family by visiting their blog:  Serving up Stevens 


As you know October is Spina Bifida Awareness month which is why I decided to feature kids each day of the month to show everyone what Spina Bifida looks like.  I am always amazed that few people have heard of SB despite the fact that is the THE most common birth defect.  I wanted to showcase all of these beautiful children and their families so that anyone that stumbles upon this blog can see how special, wonderful, precious, and healthy these kids are.  I've given a lot of thought to what Spina Bifida awareness should be about.  A lot of attention is given to the importance of taking folic acid in order to lessen the chance of your child having SB.  And yes, if you have a working uterus you should absolutely be taking folic acid every single day.  But to me, that is Folic Acid awareness, not SB awareness.  To me SB awareness is making the world aware of all the children, teens and adults living with SB and what their lives are like.  For me it is desperately wanting doctors to know about SB because so many have no clue and they are advising their patients to terminate their pregnancy simply because the child has SB.  This is unacceptable to me.  I think SB awareness is being an advocate and a voice for Caleb.  It is being an advocate and a voice for the unborn baby just diagnosed with SB.  It is being a support to those parents that are terrified and unsure what to do.

I have seen some amazing things happen in the past couple of weeks.  I have seen almost 700 "Redefining Spina Bifida" t-shirts sold! I have seen my online family grow and get stronger.  I have seen a passion and a fire in all my fellow SB families to DO something.  To take action.  To be a voice.  To take over the world.

We have decided to make this Wednesday "Spina Bifida Worldwide Day of Prayer"  Prayer is a powerful thing people.  I discovered a new appreciation for prayer recently.  I am doing a wonderful Beth Moore bible study on the book of Revelation at my church.  In Revelation 5:8 our prayers are depicted as golden bowls full of incense in the throne room of God.  I got such a mental picture of all of my prayers being in these beautiful golden bowls.  My prayers are valuable to God, your prayers are valuable to God.  Prayers aren't just tossed into a plastic Dixie cup, they are in splendid golden bowls.  I don't know if that means anything to you but it sure meant something to me.  It gave me goosebumps all over.  Take time to visit the link above and make a commitment to pray on Wednesday.  The link will tell you specifically what to pray for.  Imagine hundreds, maybe even thousands of us praying all at the same time.  And then imagine our prayers being placed in beautiful golden bowls.  Valuable to God.

He Is Risen

"On the first day of the week, very early in the morning, the women took the spices they had prepared and went to the tomb. They found the stone rolled away from the tomb, but when they entered, they did not find the body of the Lord Jesus. While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. In their fright the women bowed down with their faces to the ground but the men said to them, "Why do you look for the living among the dead? He is not here; he has risen! Remember how he told you, while he was still with you in Galilee; 'The Son of Man must be delivered into the hands of sinful men, be crucified and on the third day be raised again.'"

Luke 24: 1-7

Baby on the way

It is an exciting time in the McLelland house these days. It looks like Caleb is going to be big brother in February. I am almost 6 weeks pregnant. We've known for a couple of weeks but I have been so hesitant to tell everyone. After losing 2 babies last year it is hard not to be anxious about this pregnancy. But I figured it is best to let people know so that those of you that pray can begin praying for this new life. I had a sonogram last week and it showed exactly what they expected to see this early in the pregnancy, just a small sac. I go back for another sonogram July 2nd to make sure there is a heartbeat. The dr has me on progesterone, it might not help but it certainly isn't going to hurt. We are cautiously excited right now since it is still so early in the pregnancy. The bible says to "cast all your anxiety on Christ because He cares for you", so that is what I do on a daily basis. I know that He is in control of this new life, so all I can do is I cast my worries and fears at His throne. I trust that He knows best. We would certainly appreciate your prayers. I will keep you posted on how the pregnancy progresses.

Bad News

Well our family received some bad news today. I went in for a routine OB visit and an ultrasound showed that I have had what is called a "missed miscarriage". Basically that means that the baby died, probably a couple of weeks ago, but for whatever reason my body hasn't realized that yet and hasn't expelled the baby. So, I have to have a D&C this Saturday morning to remove the baby. This was certainly a tough blow to us. We are understandably upset and probably a little in shock. I'm one to believe that everything happens for a reason, even if we don't understand or even like the reason. I've had the song "Praise you in this storm" by Casting Crowns in my head all day long so I thought I would post the lyrics.

"Praise You In This Storm"

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Big Brother Caleb

Very big news in the McLelland household! Caleb is going to be a big brother! He will have either a little brother or sister in Mid-March. We bought him this shirt as a cute way of letting family know, we had a busy day driving to see all the grandparents. It took them a minute to understand what his shirt meant, they had to read it out loud a couple of times before they got it. It was pretty funny. As you all know, Caleb has Spina Bifida so we are just asking that everyone lift up prayers that this precious baby will be healthy, that the delicate spinal cord will form just the way it is supposed to. The spinal cord forms very early in the pregnancy so please start those prayers soon. We are very excited about the new addition to our family and we know that Caleb will be an outstanding big brother. I happened to read this verse during my quite time today so I thought I would share it.

"Before I made you in your mother's womb, I chose you."
Jeremiah 1:5