Feeling different as a special needs mom

It is time.

Time to experience some of the emotions of being a special needs family.

They are not all bad, but they are there.

Like the times when you listen to those whose main concern in life is to look smart, intelligent, and be admired for those things.  And you remember the days that that meant to so much to you, and you realize with a deep understanding, that some of the most precious, beautiful, deeply profound moments have been brought to you by one that the world would not consider smart or intelligent.  And yet, this little one has taught you much more than those brilliant, smart people ever will.  Perhaps they touched your mind, but this one has touched your heart and your spirit.

The times you feel sadness when people do not choose to see the beauty in your special needs child.  Who choose to look away in ignorance or fear that something "bad"  like your child may happen to them.  Those are the times you must choose to overlook the pain in your heart and forgive, realizing that they have just given up seeing all that is beautiful and precious.  You must remember the times that you did this yourself to others before you had a special needs child yourself.  And you must forgive yourself and be grateful you were given a second chance to love in such a special way

The times when you stand in a room, and you don't know how to make small talk any more.  You are used to speaking of deep things, things that talk of life and death.  Things that talk of  love, cherishing the moment, making every moment count, grieving the sorrow and suffering, hoping for the beautiful time and place where there will be no more of that and yet dreading it with all your heart.

The time when you don't know the right questions to ask anymore.  You look at someone who is in despair over a cold that will be gone in a week, who says that they are suffering and you are silenced.  The point when you are not angry or thankfully the concept of it not being fair has not crossed your mind, but you are confused, not sure how to respond, not sure how to empathize, not sure how to feel the same sorrow over something that in your mind would be a blessed relief to deal with, rather than surgery, the right pain med, how to prevent seizures, etc.

The time you realize you are different and changed on the inside compared to who you used to be.  The exhaustion, the challenges have changed you.  And you are somehow grateful for it.  Grateful for the privilege of caring for these little ones.

Then there are times you realize and grieve for yourself.  You realize that your body deals with more stress than any normal person.  You realize that if you do not take care of yourself you will die younger, you will age quicker.  You don't know who to share with. No one understands your fears and your joys, your griefs. And than you are grateful for the everlasting Father of this universe who cups you in His Hands and who truly understands and who is always there.

You grieve for your other children.  You grieve that they will not have a normal childhood.  That they don't get as much attention or they have to deal with a mom who is more tired  But you are grateful that they will have a depth of compassion others will not  You pray it changes them for good.

You grieve for your husband.  He has a wife who is tired, who needs more help, who is not as young and vibrant as she used to be.  And you are grateful for faithful, compassionate supportive husbands.

No, I am different.  I always will be.  This will have changed me forever.  It will have changed my family forever.  But I have the choice of how to respond as always.  I have the choice to fight and be bitter, or to trust the Lord and let this change be for the better.

Right now, in the middle of my exhaustion and my emotion, I am choosing, choosing to trust.  Choosing to believe that beauty truly comes from ashes, that the Lord can cause all things to work together for the good of those who love Him.  I have seen glimpses of it.  I have seen glimpses of the good that He is doing in the midst of the everyday.  I am grateful.  And when fear grips me, or there are times I do not want to trust, I will surrender it all to His hands.  He will allow me to fall apart, He will allow those emotions to be there, He will listen, and then He will be there as he strengthens me to get up and get going again.  He will be my anchor, the lifter of my head.

Poem- Do the Next Thing

A poem quoted by Elisabeth ElliotDo The Next Thing

"At an old English parsonage down by the sea,
there came in the twilight a message to me.
Its quaint Saxon legend deeply engraven
that, as it seems to me, teaching from heaven.
And all through the hours the quiet words ring,
like a low inspiration, 'Do the next thing.'
Many a questioning, many a fear,
many a doubt hath its quieting here.
Moment by moment, let down from heaven,
time, opportunity, guidance are given.
Fear not tomorrow, child of the King,
trust that with Jesus, do the next thing.
Do it immediately, do it with prayer,
do it reliantly, casting all care.
Do it with reverence, tracing His hand,
who placed it before thee with earnest command.
Stayed on omnipotence, safe 'neath His wing,
leave all resultings, do the next thing.
Looking to Jesus, ever serener,
working or suffering be thy demeanor,
in His dear presence, the rest of His calm,
the light of His countenance, be thy psalm.
Do the next thing."

March 15, 2013

Christ is building His kingdom with earth's broken things.  Men want only the strong, the successful, the victorious, the unbroken, in building their kingdoms; but God is the God of the unsuccessful, of those who have failed.  Heaven is filling with earths broken lives, and there is no bruised reed that Christ cannot take and restore to glorious blessedness and beauty.  He can take the life crushed by pain and sorrow and make it into a harp whose music shall all be praise.  He can lift earths saddest failure up to heavens glory.  

J.R. Miller "Streams in the Desert"

Follow Me and I will make you....

Make you speak My words with power

Make you channels of My mercy

Make you helpful every hour

Follow Me and I will make you

Make you what you cannot be

Make you loving, trustful, godly

Make you even like to Me.

From Scotty Smiths blog Heavenward on Feb. 1

From Scotty Smiths blog Heavenward on Feb. 1

"It’s a source of incredible peace and freedom to know that you’ve ordained all of our days for us. That doesn’t feel like mechanical fatalism, rather Fatherly affection. I’ll not live one day more or one day less than you decree, by your sovereign purposes and eternal pleasure.
There’s a part of me that would like to turn the clock back for a possible “do-over,” especially for certain stretches of my life. But then again, not really. Your name is Redeemer, and you’re the God who restores years eaten away by locusts. I choose to rest in your love rather than stew in my regrets. I have great confidence and hope in your commitment to make all things new.
Continue to rescue me from my small and wrong thoughts about you. Keep showing me how little I really see and understand about the greatness of your love for us in Jesus. That won’t embarrass me; it will thrill and free me. May the gospel keep on getting bigger and bigger and bigger.
Indeed, may each additional day, week, month, or year you appoint for me in this world be filled with a greater grasp of the only love which will never let go of us—the only love that is enough, the only love that is better than life, itself. By your Spirit, Father, continue to reveal to me how wide and long and high and deep is the love of Christ—the only love that surpasses knowledge (Eph. 3:18-19). Everything else will take care of itself. So very Amen I pray, in Jesus’ matchless and merciful name."

Yes, my Father, and help me to remember this.  Thank you so much for the fact that there can be an eternal view.  And how I need that.

Tonight as my body aches, and I cannot seem to relax, I ask you to take my swirling mind and focus it on You.  Let me my mind relax Father, realizing the beauty of who You are, and Your amazing love.  I can rest in this, and this alone.  Thank You, that I am loved by You.  Thank You, that because of Your grace and Jesus I am accepted. 

Josiah Updates

I haven't updated people for awhile on Josiah.

Well, some big news is he now has nursing care, and it has been a big help.  He was amazingly approved for 40-48 hours a week and so there have been two nurses who are coming to help during the day.  It has been a big help so I can do other things with Hannah and Elijah, housework and the other thousand little things I have to do.

Of course, it is a little different having people in your house all the time, but overall I am really grateful for the help because things were becoming very overwhelming with his care.

He is still being fed through a g-tube and his vision is very poor, the pediatrician thinks he is legally blind even though his eyes sometimes work.  We think the problem with his vision is more on the side of the brain rather than the eyes.  This condition is called CVI (Cortical Visual Impairment).  Here is a link to the explanation for those who are interested.  :)  http://www.aph.org/cvi/define.html

About a month ago Josiah started to throw up very badly.  For a while it was after every single feeding, and sometimes not only once, but multiple times after each feeding.  He has started to do better, sometimes he can hold down his feedings, but sometimes he can't.  Often he struggles with holding down his medication.  This causes a lot of struggles because he needs his medication to be seizure free and comfortable.  If he doesn't get his medication he is often in pain.

We are trying to figure out what to do about his reflux.  Some medication seem to help, but none help totally.  He has been approved for a fundoplication, but I don't know if his reflux is severe enough for that.  Different doctors have different opinions.  So, we would appreciate for wisdom.

I hope you all have a really wonderful weekend. Take care my friends.

4 year old boys and the things they say....

Mommy, you are a thousand trillion years old, and you look so nice and you are cute.

Year End Questions

Many people rush into the new year with lofty ambitions and new year’s resolutions without properly evaluating, and learning from, the past year’s experiences. When we don’t intentionally unpack our previous season, we aren’t fully prepared to grow into the new season life affords us. With that in mind, I want to share with you some questions of introspection I like to use at the end of every year. I believe that when we deal with these questions in a very purposeful way, we are best equipped to set new goals and clothe ourselves with the right approach to enter the new year with determined resolve and clean spirits.
Questions for Introspection and Implementation
1. What are my fondest memories of .....? Who and what made them special?
2. Was there a beautiful moment(s) in which God revealed himself more deeply to me? (a relationship, a revelation, a serve opportunity, etc.)
3. What were some of the most meaningful projects, accomplishments, or activities I engaged myself in this past year? What underlying factors made them meaningful and how can I build these factors into my core values for the new year?
4. What did I procrastinate on and fail to get done this past year? What discipline can I add to my life to eliminate procrastination in the new year?
5. Am I closer to my friends and family from my activities this past year? If so, what activities brought me closer so that I can practice them more in .....? If not, what goals do I need to set to achieve greater relational intimacy in the new year?
6. The things that excite me most reveal much about my priorities. What did I celebrate most in 2011? What does this reveal about my priorities? Are they things that God values (such as one sinner coming to repentance or a person becoming more devoted to Christ, His Church, and His cause)?
7. How committed have I been to my local church: Christ’s primary and greatest agent for changing the world? How can I become more committed to Jesus, His Great Commission, and His Bride: the local church?
8. Who am I taking responsibility to mentor (discipleship)?
9. What happened this year that needs to be remembered, memorialized, perhaps recorded in a journal so I can return to it in the future and recall the blessing (or the rebuke) of God? Making such a record is like those monuments and altars God had the Israelites raise up when great things worth remembering had happened.
10. What have my prevailing feelings been (and what are they at the present)? What has been my dominant mood this year? Has there been a preponderance of sadness, of depression, of fear, of anger, of regret, of joy, of gratitude, of emptiness, of enthusiasm? How has that mood affected others?
11. What have been the “blessings,” those acts of grace that have come through others or—as I perceive it—directly from God himself? Can I express praise and appreciation (sometimes even written in a thank-you note or other expression of gratitude to someone)?
12. Who inspired or mentored me this year? Should I let them know how much they influenced my life?
13. Have things happened for which I need to accept responsibility, perhaps leading to repentance? Why did they happen? Were they avoidable and how can they be prevented in the future?
14. Is there a possibility that I am living in denial of certain realities? Painful criticism, sloppy work, habitual patterns that are hurting me and others?
15. Are there any resentments or ill feelings toward others that remain unaddressed, unforgiven? If I don’t deal with them appropriately, I will carry toxins into my new season in 2012. What must I do to deal with them? Do I need to release someone who has hurt me or apologize to someone I knowingly hurt?
16. Is there an overarching message God has been speaking into my life this year? Through Scripture? Through books? Through sermons? What has he been saying through those in my inner circle of relationships? Through critics? What insights swirl up and out of the deepest parts of my soul? Which of them needs to be repudiated, and which needs to be cultivated?
17. What are the things I might do and say that would make the people in my inner circle feel more loved, valued, appreciated, and even empowered going into ....?
18. Am I mindful of the socially awkward, the poor, the suffering, the oppressed in my local world and in the larger world? Am I in tune with appropriate current events in the world and perceiving them through the lens of biblical perspective? If not, what can I put in place this new year to help me become more attuned people, community, and events.
19. Am I closer to God now than I was at the beginning of ....? Why?
20. Now, what will be my goals and resolutions as I move forward into ....?