Friday, July 25, 2014

Breathing....

First, I want to start off by thanking all of you that are praying for us.  There are some days that I just know that God's grace is being poured out in abundance upon us.  He promises to hear our prayers and to carry us - our life is a living example of that!  It touches my heart to know that people with their own busy lives, with their own praises and requests, their own needs, take the time to lift us up as well.  I cannot express what an encouragement that is to me.

This morning, Serenity goes in for her tonsils/adenoids removed and tubes placed in her ears.  This is normally an "easy" surgery.  However, given her special needs - including her personality!!! - we are not sure what to expect.  The doctors are also taking special precautions.  She will be staying overnight at least tonight and possibly tomorrow night.  In addition, the doctor reserved an ICU bed for her "just in case".  That makes my heart tremble just a bit, honestly!  Knowing our little firecracker, she will either be wanting to run around right after surgery or she will be testing our faith with complications - either way, we will need your prayers and His grace! 

Handsome will be the one staying with her.  I still struggle with the change in our roles a bit.  I can truly see that I need to be the one at home, especially with Little Man's arrival.  But it is hard to kiss my girls goodbye as Daddy takes them away to the hospital.  I am so thankful for God's provision on this, but it tests me in a whole new way!

Grace is doing so very well recovering from her surgery!  Her spica cast is beginning to really smell though, despite our best efforts.  She is scheduled to get it off in about 3 weeks.  We had a heat wave here just after she got it on.  Once again, God had arranged provision way ahead of our need.  When we moved into our home over a year ago, we had to replace the furnace.  Given where we are and the lack of gas lines, a heat pump was the best option.  It automatically comes with air conditioning.  I told Handsome at the time that there was no way we were going to spend the money to run the air conditioning given that our area only gets a heat wave about once a year!  I should have known as soon as I said that!  So fast-forward a year and I am so thankful for God's provision for Grace's comfort.  It looks like this week may be hot as well, so I will thank Him for the cool air and trust for the provision to pay for it.  (Then, I will go back to our "no AC" vow. ;-) )

Grace continues to be such a joy in our life.  She is Handsome's reward at the end of a long day.  He still cuddles with her every night as the day winds down and scoops her up every morning as the day begins.  I am amazed at the Lord's gracious gift to my hard working husband.  He fiercely loves all his children and each one has their own niche in his life, but Grace is his peace right now.  What a precious thing.

As for life in the rest of the family?  It is a busy summer.  I am learning in yet another way, to let go of self and rejoice for others.  I don't like "busy" - I want a "quiet" calendar.  But I have realized again, that is not necessarily what my kids want.  They want to be seeing friends and going places - to enjoy their break from school to the fullest.  I also have to remember that even though each mark on the calendar means I am busy, it doesn't mean each child is busy.  Today may be the "Big 3" busy with youth group, but the younger ones are at home.  Tomorrow it may be four doing things, but the others are not, etc.

Even though it is busy, it is a little hard to believe that the summer is almost gone.  I tell Handsome that I feel like on May 31st, we are at the top of the slide and then "zoom"....we are at the bottom of the slide and it is time to start school again!  Once again, it is so true for another year.  I am seeing the end of summer quickly arriving.  I have to laugh once again at all my big plans for this summer.  As the summer closed last year, I was determined that this summer I would finish painting the house and garage, have a garden going, and work on at least several areas of our overgrown, wild yard.  (We are now on 5 acres - what a gift - but Handsome and I laugh that it feels like a half an acre due to the the overgrown blackberry bushes everywhere!)  I certainly didn't picture that I would be bouncing a cranky baby and dealing with multiple surgeries!  I, of course, had planned for spaced out surgeries - not bunching them altogether due to a pregnancy!  God's plans were obviously different - and I praise Him for that.  So we will survive another year with one side of the house a different color....and blackberry brambles still taking over.  I finally picked one 10 X 15 area that I will get landscape fabric and bark on, just for my own sanity.  (But right now, all the supplies are stacked up and waiting....hopefully they won't still be mocking me as we start school on August 25th!)

I am starting to feel like I can breathe again.  I find that with each new baby or adoption.  There is a "fog" that surrounds the first two months of each new addition.  I don't see it at the time - in fact, I would insist that it wasn't there at the time!  But then as we pass the two month mark, I do realize that in a way, we were in survival mode and now we are finally getting into the new "normal."  We were given a really nice baby swing to use by some friends and it has made a world of difference.  I am able to snuggle him in and have a small period of time in which I am free to tackle the dishes, laundry, or paperwork pile....or just snuggle another precious little person. 

However, there is a cost.  If he sleeps well in the swing, he doesn't sleep well at night.  So then the endless debate begins - stuff done during the day or sleep at night?  It really should be an easy answer, right?  I think that if I could count on getting a good 4-5 hour stretch of sleep, it would be an easy answer...but so many nights, there are repeated needs of kiddos...so it makes for lots of "cat naps" but not real, restful sleep.  (I can hear an "amen" from some of my friends!)  So every morning, I think that it is more important to have the freedom during the day to get things done, but then by 4 in the afternoon, I am longing for sleep instead.  And not just that "boy, a rest would be nice" but the "I am feeling nauseous because I am so tired" type thing.  Once again, I need to be trusting that my Savior will provide for all I need...even sleep.

So as I pray for the days ahead asking my Savior what my priorities and goals should be, one of the things I have realized is that my three girls - Serenity, Hope, and Mimi - have hit their "happy" place...and this is not necessarily a good thing.  They are more than happy in what they can do and aren't seeing the need to do more.  For example, Hope is safe, well fed, and slightly mobile.  All the basic needs that were denied for 5 1/2 years are now met and she doesn't see the need for more.  So most days as we put her on the floor, she will pick one toy or thing, scootch to it on her bottom, and then "pick" at it the rest of the day.  If we move her away to something else, she will just wait until we look elsewhere and will move right back and begin "picking" again.  Her therapist is really working on teaching her to walk, but like Mimi, she really isn't interested. 

So, I am praying for ideas and opportunities to press each of my precious girls forward in their development.  There are endless ideas and resources out there, but I know from experience it is very easy to plan and even to buy things, but the implementation is the key.  And that depends on so many things that are outside of my control - like others' needs, bad attitudes, paperwork/medical issues that need to be taken care of, etc.  If you are praying for us, will you lift this up as well? 

For Serenity, my focus at the beginning will be communication (either speech or sign language) and more directed play.  Not just wandering from one mess she makes to another.  She still doesn't play with toys and probably won't if she doesn't learn "how" to, beyond throwing them or putting them in her mouth. 

For Hope, both moving and communication are on the list.  Specifically walking or walking in a gait trainer.  The communication is much more difficult.  She doesn't even grasp the concept of communication being interactive.  Having Little Man, I am more painfully aware every day of what she has been denied.  He cries and someone picks him up and soothes him. He coos and someone coos back.  He smiles and gets smiles in return.  He knows already that if he does something, something will happen in return.  Hope has never had that.  As a baby, no one came when she cried.  No one answered back when she cooed.  No one returned a smile.  No one "talked" with her.  It is amazing at the hole this has left in her life.  It almost wires things "backwards".  Now when she cries and we try to respond as we would any of our other children, it does not soothe her, it winds her up more.  When she cries or fusses and we talk gently to her or try to rub her back or soothe her, she screams and pulls away - or she just ignores us.  This does not mean that we will stop, but it does make it harder.  Again, God is showing me the damage that has been done.  If it is harder for me to want to soothe her when she doesn't respond or responds negatively - and I know why and I know she needs it anyway - how much harder is it for her to understand how to interact when all she has been given is negative responses?  We have to begin at the beginning again - but with a child in which all the natural desires to interact (such as with Little Man) have disappeared or have been warped into something to fight against.  It hurts my heart to even think about. 

For Mimi, the goal is also communication and mobility- but again, her little life stands in stark contrast with Hope.  Mimi, without miraculous healing by our Savior, does not have the potential that Hope does to communicate.  Cognitively, she is just not able to.  However, because she had a family from the very beginning, her little life is so different!  I was determined from those first days that she needed to always be with me - always seeing my face and hearing my voice.  So even though she is not able to communicate with sign language or words, she knows if she cries that we will respond.  She knows that her laugh will make others laugh.  She knows that her facial expressions trigger a reaction.  The difference is almost beyond description.  Even though I don't think she will truly have language skills, I still want to fill her time with practice of these things.  The biggest challenge with Mimi is that she does not "mimic".  So if I say "Dada", she will not even try to repeat it.  If I do a motion with my hands, it is not repeated.  If you really think about it, it takes away the starting block for building any communication.  Our only option is to use things she already does and try to turn that into a language of sorts.  For example, when she was pretty tiny, I am thinking around a year old, she began to purposely "blink" at me.  I immediately began to blink back at her.  It became a game that she still plays to this day.  Eventually it has gotten to the point that if I blink first, she will blink back at me.  But this is has taken many, many years of playing this game.  Rereading what I just wrote makes it sound as if she doesn't interact with us, but that is really not the case either.  She is very interactive and loves people.  She will crawl over to us and pull up to a stand and growl at us until we pick her up.  If she wants someone to turn on the TV (she loves music videos), she crawls over and makes a specific sound until we come.  But I can probably count on one hand these type of specific communications.  She "talks" to us all the time, but it is in her own delightful way and on a very limited level.  I know this is a hard thing to grasp if you don't have a child like this, but I saw it summed up on day on a poster.  It said, "They say you will never talk, but as your mommy, I hear you "speak" every day."  This is so very, very true.

My time is gone this morning as the sun is fully up and the house begins to stir.  I will continue breathing and praying and praising God even as I am counting the benefits versus the drawbacks of drinking another cup of coffee this morning.  He is so good.  Even when life is hard, He is good.  Maybe I should say especially when life is so hard, He is so good.

Here are a couple of pictures to tide you all over until I can get more of the rest of the gang...I am limited right now to the pictures the kids take of each other and baby - so needless to say, most of them aren't posted publicly because of the crazy poses and angles! :)

 The Prince

 Little Man

Hope

To Him be all glory, honor and power.

Monday, July 7, 2014

Grace's Surgery and EFBF

What a month has gone by since my last update!  Almost every morning I think, "Today I will update the blog!"  And then another day goes by....or I decide that maybe what I would write that day would be worthless because I was so tired physically and emotionally.

The good news is that Grace's surgery is done and was successful!  Praise the Lord.  She went in on Monday the 30th and came home on the 3rd.  Handsome had to stay with her because there is no way I could do it with Little Man.  It is hard for him to be away from work for even a few days, so I am very thankful he was able to do this. 

Grace will be in a half-body cast for at least 4 weeks, poor baby.  The doctor decided that the second hip did not need to be operated on, so we are also very thankful for that.  She did much, much better at the hospital with Daddy than she did with me in November for the g-tube.  Again, God knows best.  I was pretty frantic that I was not the one staying but with cell phones if the nurses needed to ask a question, it went very smoothly.

She had to have a special car seat and we have to be careful on how we position her at home.  Her pain meds are also critical at this point.  We were a little late this morning and she was hurting.  It broke my heart.  Please continue to pray for her.  That she heals quickly and well.  Pray for us as we maneuver through the next few weeks with the cast.  The day(s) right after the cast is taken off will also be incredibly hard....so many prayers would be appreciated.

In the meantime, I am suffering with EFBF - Extremely Fussy Baby Fatigue.  This is a condition in which your baby is so fussy that you are worn out body and soul.  It quickly develops a partnering condition of EFBA - Extremely Fussy Baby Anxiety.  This is when your baby is so fussy that you have to strategically plan everything - including things like how to go to the restroom - around your baby's screaming.  When you look at everything you have to do through the lens of, "How do I do this with one hand?" while bouncing your fussy baby with the other hand.  Both can be downright debilitating.

Yes.  Right after my last blog post, my content baby turned into our typical extremely fussy baby.  I had forgotten how hard this is.  I am just not hard-wired right to handle a screaming baby - it just completely undoes me.  Don't get me wrong, we do let him cry. We have to in order to keep life moving here, but it is just not something that I am able to get used to.  Our hardest time right now is at night when I need to feed and rock Mimi to sleep.  By the time I lay her down, I am wiping back the tears at hearing him cry in the other room - as well as feeling so badly for Handsome, The Warrior, or The Testy Chef - whoever has the turn of trying to walk/bounce him until I can come get him.  By the time I have him back, I am so wound up that I cannot sleep....leading to more Fussy Baby Anxiety! 

So right now, even the most mundane like showering, using the restroom, folding laundry, and cooking has become epic in proportion. However, because this is our ninth or tenth kiddo like this, I do know that it is just a season.  That eventually (with some a little over a year) this too shall pass.  I am so in love with this Little Man and so thankful for this precious gift my Savior gave to me that I cry over him daily.  Even during such a hard, hard time, I know that I have been blessed beyond measure - far beyond what I could ever have imagined.  I know this seems contradictory to some, but it is the truth.  It is a huge struggle to get through the days, yet I am so filled with joy over him.

My precious family did go camping in mid-June.  The Helper and The Testy Chef (my two oldest daughters) stayed home with me and the "Little 5" to help and to finish their schoolwork.  It was a really difficult week with Little Man and trying to keep the other four well taken care of so the girls could study.  BUT the amazing thing to me - though some of you will laugh - is how QUIET it was (other than Little Man!).  I could not believe it.  I just soaked it in every day.  In addition, a completely amazing thing happened - something I was told was true, but had seriously doubted over the years...when I had a few seconds to clean something...it STAYED clean.  Really!  Did you catch that?  It STAYED clean.  I have to say, as silly as it sounds, this did give me some hope for the distant future.  I might, just might, have a clean house some day....ah, bliss!

The week after, my two oldest girls took a trip to Colorado with their Bible quiz team.  The Helper's team took second in the nation and she was personally the third highest quizzer in the nation!  I am so proud of them both!  While they were playing and getting a much deserved break, Handsome, The Warrior, and I had to hold down the fort at home.  These are really tiring days!  The day after they got home was Grace's surgery - so the team at home shifted again to the Big 3 kids and I while Handsome was in the hospital with Grace.

This morning, my Big 3 are headed off to youth camp.....Can I say that I am really dreading this week?  I don't think any of them read my blog regularly, but I won't post this until they are gone...two of the three have offered repeatedly to stay home and help me.  It makes my Mama's heart melt at their kindness, but there is no way I am going to let one of them stay home.  Their youth group is an amazing group of kids and leaders and they deserve the break!  But....I am still dreading this week.  After the Big 3, I have three 10 year old boys, an 8 year old girl, and a 7 year old boy.  I am realizing more and more that they just have not been expected to learn/do the same things as the Big 3 because they are so capable....so this is a good week to really work on some training.  I have realized, especially with the boys, that there really seems to be a 'you-got-it-or-you-don't' gene for taking care of smaller kids - and I get that.  I don't expect them all to be kid-helpers.  But I should be able to say, "Will you take care of ______?" and have it get done.  Hmmmm, another area to work on.   Regardless, I would so appreciate prayers for this week.

Once the Big 3 are back, life still stays busy for July.  Lots of doctors' appointments and Serenity has her surgery for tonsils, adenoids, and ear tubes the end of this month.  Another extended family camping trip in there as well.  I just keep praying that although I am exhausted (EFBF and EFBA), that my kids are loving their summer and will be filled to the brim by the time we need to focus on school again.  Praying for the strength for today....and tomorrow...and the next day....

Here are a few photos for fun:
Hope playing

Serenity with Grandpa!

Hope with Smiley and The Boss

Hope on her hands and knees!!!

Hope with Grandma

Mimi with Grandpa

The Testy Chef with Little Man

Grace and Little Man

The Boss

The Warrior with Little Man

Serenity (She is so easy to get fun pictures of!)

Little Man

The Helper and Serenity (both addicted to selfies).