Sophie Kate’s Journal

Hey everyone.  I was just checking in with Sophie Kate’s online friends tonight (Sun. Sept. 28) b/c I had been a bit behind due to our very busy weekend when I found out that another one of her friends has passed away.  This precious angel was just a few months younger than SK and had spent way too much of his short life in the hospital.  I am just devastated for this family.  What does this all mean?   What is this all for?  All of this hurt, pain, heartache and suffering that our precious babies and families have to go through, I don’t get it, AT ALL!!

Is this what Sophie is headed for months or years down the road?  Or it might just be years and years of pain and suffering b/c of the way her brain is causing her body to jerk and pull.  I heard this just this week and right now I can’t remember where I was (and I have heard this all of my life) that God doesn’t make mistakes, He makes everyone special just as He designs.  Really?  He made Sophie to hurt and be in pain and very possibly never utter a single word or ever understand who her parents are?  And we are supposed to live the rest of our lives this way?  How can we possibly?  Why is this happening to our babies? 

I cannot make sense of this b/c it does not make sense!  These children have so much to deal with in their lives that I am not going to even begin to list or describe, but it is just one thing after another, constant struggle, constant battle.  Ya’ll I cannot imaging hurting any more than I hurt over Sophie pretty much daily but I guess if I did not have God’s love and comfort in my life then it would be worse.  I am able to get out of bed each morning b/c of the strength He gives me.  I have no strength of my own left.  Are there no words for such a situation and time as this?  No words, only prayer.  Please remember this family in your prayers this week and in the upcoming weeks.   

God of heaven and earth, be real to this family right now.  This precious angel is in Your presence at this very moment and we rejoice in that and we know that he is no longer hurting.   Give Your peace and Your comfort to the loved ones he left behind, God hold them close to You and surround them with Your love.  All of this in the name of Jesus, “that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.” Philippians 2:10. 

Hey everyone, hope this post finds you all doing well. We’re doing ok over here. Sophie Kate has been a bit more fussy than normal for about a week. We’re trying to figure out what may be upsetting the little princess. Maybe she’s cutting teeth it’s hard to tell, maybe not tolerating her feedings as well as she had been since she’s been crying a lot more during feedings. I thought maybe her reflux was back, it’s just really hard to tell with her. So I have been talking to some of her doctors and nurses to try and figure out what we might need to be checking on. At this point I think we are going to talk to her nutrionist and possibly try a new feeding schedule and maybe give her some motrin or tylenol in case it is teething. I just want her to be happy, she deserves to be pain free and happy.

We are going to start seeing a new physical therapist soon. She’s already familar with Sophie Kate b/c she works with one of SK’s doctors so I am excited to see what she can do to help us. Yes, this means adding another day of therapy to our schedule but we’ll do whatever it takes to give her the best chance possible at learning to sit up, crawl and walk.

As for us as a family, we are hanging in there I guess. There are lots of things keeping us busy this time of year. Cooper’s got flag football, Jacob’s got baseball, SK’s got lots of therapy and Grey’s new role in the family is comic relief. God bless him, he can make me laugh if nothing else can.

I have to give a “shout out” today to my oldest. Happy Birthday Cooper! You made me a mother eight years ago today. I could never have imagined what the next 8 years would have held for me, but you made my dreams come true that day!!

Hey everyone.  Another week has gone by and I am still trying to process and come to terms with this whole cerebral palsy thing.  You know I don’t have a clue about the grieving process when it pertains to something like this, but I do know I have been going through it since November and I am sick of it.  It’s like how do you move through something that is always going to be a part of your life?  I’m feel like I am in a perpetual state of grieving with no end in sight.  No matter how much I try to enjoy something I just can’t b/c of this life sentence I’ve been given staring me in the face. 

I thought I would try to start participating in Kindermusik last week through Sophie Kate’s early intervention program.  It was our first venture into the world of group therapy.  So I get in there and literally I am looking at these other children and thinking “What is wrong with these kids?  They seem perfectly healthy.”  I am trying to talk to myself to calm myself down, but myself was not listening.  I was on the verge of tears off and on for about 5 minutes, when I heard one mother ask another mother how old her child was.  When the mother answered 10 months (same as Sophie) and I saw her baby making sounds, crawling, and trying to stand as were many others in there, I decided I was outta there and thankfully made it to the car before I completely lost it.  Come to find out there was only one other early intervention child in that class, everyone else was just random people from the community with their huge headed brain growing children (pardon me while I vent) who had paid to take this class b/c they just like the class.  So that was a fun day, needless to say we are done with that!!

I guess it’s ok in my mind or I am more able to bear being around the boys friends b/c everyone is older than SK, but being around children that are SK’s age or very close to it is sooo hard.  Seeing what all they can do and what Sophie Kate cannot is heartbreaking.  I was suppose to have the perfect children too. 

The days just keep coming so quickly, one on top of the other barreling toward the one year mark.  Everything keeps playing over and over in my mind almost daily as if I have no control over it.  Everything in my life was perfectly ordinary and normal this time last year and now most days I feel like I am barely hanging on as things continue to spin out of control and make absolutely no sense.  I work tirelessly with this baby God has given me not knowing if it will make any difference whatsoever to her future, wondering at the same time what this is doing to my children who actually do have a future and a life to look forward to. 

I hear all of these people around me tell me what a blessing Sophie Kate is to them, how can her own mother not feel that way?  She utterly and completely exhausts me and yet I love her so unbelievably deeply.  How can these two feelings come together?  And yet they do in her.  I admit I am struggling with God over what has happened to my baby girl.  I want so desperately for her to be healed, but I have to come to terms with the fact that that may or may not happen while we are on this earth.

She will be healed one day for sure, there is no doubt, when she stands before her Creator!  Until that day, God lift our heads to the One who is the source of all our strength and let us feel how truly ALIVE Your love really is!  Praise be to the Name that is above all names, Jesus!!

Thanks for listening.  Sorry for the downer posts lately.  I hope the posts will pick up some joy soon, don’t yall?

Hey, everyone.  Well, our first full week back from the beach has certainly not been what I had expected.  I guess we were living on borrowed time and our string of good weeks has now come to an end. 

The appointment with our physical medicine doctor (called a physiatrist) was Tuesday.  Sophie Kate was officially diagnosed with cerebral palsy that day, the type of cerebral palsy that she has is called spastic quadriplegia (not sure if that is spelled right).  The quadriplegia means that all 4 of her limbs are involved and the spastic refers to the spasticity of her muscles i.e. the high tone or increased tightness that she has in her muscles versus her muscles being limp and floppy which hers are not. 

You know this had always been on our minds, this is certainly not a unexpected diagnosis, but to hear those words pertaining to your baby is indescribible.  I cannot even put words to it.  We have been given some short terms goals for Sophie Kate and have been told that these are essential for her to master in order for there to be any chance that she will ever learn to crawl or walk.  This doctor is going to be a great addition to Sophie’s medical team.  Although I had to have a very difficult conversation with him, he was quite pleased with all of the therapies that she is involved in right now and he said he wouldn’t change any of that at this time.  He is going to be very involved with the therapy side of things and will be keeping on top of her muscle tone issues and medications to help that. 

This is the first doctor that has ever asked me what kind of person Sophie Kate is.  It really brings tears to my eyes first of all when I think about how kind he was with his questions and second of all when I think that none of her other doctors have bothered to really know who she is.  He asked what her days were like, how she reacted to strangers, how she reacted when other people held her, how she responded to her therapists, what her nights were like, what things calm or sooth her and I could go on and on.  I felt like he really wanted to know her and I haven’t felt that from any other doctor.  God bless him.

So now we have a renewed focus and somewhat of a timetable.  He of course did not give us any absolutes of what he thought she would be able to do or not, which I wouldn’t have believed anyway, but he did give us a timetable of when we need to be seeing some things accomplished.  So we will be working furiously on these things, I would say day and night but since SK sleeps at night now I will just say day after day after day.  These things are just as important to the future of our family as they are to Sophie Kate herself.

This week has been so impossibly difficult, I have cried to the point of being sick.  I run out of time, I run out of energy when will I run out of tears?  When will life make sense again?  This is like a nightmare, but I will never wake up from it, it is always always with me.  I can never escape it.  My daughter has cerebral palsy, they say that cerebral palsy is not fatal.  Then why is it killing me from the inside out?

Okay, last post about Beach Trip “08, I promise.  I guess at some point I’ve got to get back to reality and realize that I am not still there, but it is fun to play the “this time last week” game, you know? 

So….this time last week at the beach I had met the neatest group of friends.  They had all graduated from Samford (a university here in Birmingham for my outside of Alabama friends), they were staying at the same place we were and many of them still live in the Birmingham area.  And that only begins to describe all of the things I realized I had in common with this sweet group of eight friends.  God brought this meeting together, which began with Grey falling out of a grocery cart in Publix (don’t ask, for those of you who know Grey, you are not surprised by this) and ended with a connection that I will not soon forget.  Just by meeting these girls and getting to know them a little at a time, we realized that we had a lot of things in common many were through mutual people we knew, which just blew me away b/c this was not just one or two people we had in common it was tons and then one of them like us has a special needs child, what a great connection that was.  What precious people to meet while on vacation, God was definitely in that.

I couldn’t let the beach posts go without some pictures from Labor Day, the day when the waves were coming all the way up to the dunes.  We had never seen waves like that before, some of the outlying effects from Gustav coming ashore.  

I love this picture, it really shows the power of the ocean and how small we actually are.  C and J are on the steps that went down to the beach straight down from our place.  There is no beach in these pictures, the waves had come all the way up!  All that had been beach area prior to Monday (Labor Day).

Another shot of how the waves were coming up to our beach steps, C and J loved it.  Grey as you can see was not so sure, he so wanted to be down there with the big boys but every time the waves even thought about coming up that far he was outta there.

These are actually shots from Sunday, the waves were up but not to the point that they were on Monday.  The boys had the best time boogie boarding in those waves, we were out there all afternoon.

That was a great ride captured.

Grey couldn’t take anymore fun that day.  Doesn’t he look like a little Michael Phelps in his swimsuit?  Sophie and I were the picture takers, she does a good job doesn’t she?

Gotta love and hate the dress up beach pictures.  Love the results, hate the process that gets us there.  It’s always tough to get those shots, but so worth it once you get them.  Just wanted to share a few with ya’ll, can’t share them all b/c we’ve got some great Christmas card potential with some.

Our little princess.

Grey

Jacob

Cooper

Sorry for the long winded posts lately, we just had such a great trip I couldn’t leave anything out.  God really blessed us with a great family trip.  Lastly and back to reality way too soon, SK has a doctor’s appointment this week with yet another new doctor, it is the physical medicine doctor that I don’t know that much about.  Please be in prayer for her this week, I will certainly give more information on this when I have it. 

Thanks for indulging me on the beach stories, it was fun!

Okay, so I promised a story about a pontoon boat.  Some of you have already heard this, I hope I can do it as much justice in print as it deserves. 

We rented a pontoon boat to go across the bay to a place called Shell island for obvious reasons b/c there are lots of shells there.  The winds were up a bit that day (it was Sunday), not too much just a little bit, but we decided that would be the best day with effects of Hurricane Gustav coming in on Monday.  So off we go and by we I mean just the 6 of us, there is no one driving us over to the island no tour guide of any kind, just us and a map and the markers we are to look for along the shoreline to make sure we stay on course getting there and getting back.  I really couldn’t believe that they were allowing us to do this, no boating license needed and no experience whatsoever needed. 

We were told that the channel would be “choppy,” their words not mine.  We had to come out of the bay were the boats were docked, cross this channel, and then go into another bay area where Shell Island was.  Choppy does not begin to describe what this was.  The whole boat was going back and forth, the wind was unreal, waves were splashing up and into the boat, Grey was crying, Cooper and Jacob were holding hands, Chad was driving, I was holding Sophie Kate and Grey and intermittently screaming and at the same time thinking “This is how we are all going to die.” 

Well, somehow we made it through the channel without sinking the boat and into the bay of Shell Island.  At Shell Island, there is no commercial development, i.e. no boat docks and no bathrooms.  As a side note on their website they make it very clear that there are no facilities on Shell Island so plan accordingly.  I’m not sure what plan accordingly means with children, you know?  Back to the no boat dock situation, yeah we were told to just beach our boat and then throw the anchor over, so that is what we did, no problem.

We then set out to explore this beautiful island and find all the shells we could ever hope for and it was beautiful.  The sand, the scenery everything.  It was just a really neat place.  We left our boat on the bay side and walked across the island to the gulf side.  

Those are shells, they were all over not just along water’s edge.  Hey that’s probably where they got the name of the island from, huh?

We had only rented the boat for a half a day, so we went back across the island to get back on the boat.  You can imagine our surprise when we discovered that due to the wind our boat was no longer perpendicular to the beach, it was now parallel to the beach.  Chad had raised the boat motor out of the water when we had gotten there so that was good, but there was no use putting it back down in sand.  So we all got on and by we all I mean me and four children and after putting all the life jackets on, I took my place behind the wheel, yes you heard me.  Sophie in one hand and boat steering wheel in the other, talk about multitasking.  Now here is the part we might have not thought through completely b/c Chad is in the water pushing the back end of our boat out of the sand, while I am supposed to lower the boat motor (it’s all automatic thank goodness) and “gun it” in reverse when he says to all the while holding our 10 month old baby girl.  Out of the goodness of his heart another guy came over and helped us b/c everyone in the bay was pretty much in the same position as we were with the windy conditions.  Well, you all know what happened as soon as I gunned it when I was told to, me and the four children go sailing backwards leaving Chad stranded on the beach.  So he’s telling me to put it in neutral and I am yelling for him to get on the boat b/c I didn’t know what else to do. 

Long story even longer, Chad made it to us and we headed back.  We did have to cross the “choppy” channel again, but this time since we knew we weren’t going to die we were actually able to enjoy it.  It really was a fun day, the boys loved it and Sophie Kate tolerated it.  That was really a lot for her to take in, it was a long day for her but she did sooo good.  She did not appreciate being splashed by all the waves and the spray of the ocean on the way back and you know come to think of it neither did I.

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Pontoon boat rental-$150 dollars

Life jackets-$60 dollars

Snorkeling gear-$30 dollars

Not capsizing the pontoon boat-priceless

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Don’t you just love the absolute unabandoned freedom they feel.

What a good big brother.

Let the seashell hunting expedition begin!

I am so thankful that we are able to do these things with SK and allow her to experience different things along with the boys.  It was definitely an adventure that I would love to do again!

Hey everyone.  Sadly, our week at the beach has come to an end and as we were crossing over the bay bridge, which to me really signifies that you are leaving the beach, I have to smile at the wonderful memories we made this week.  Our weather could not have been better considering the hurricane we were facing at the beginning of the week.  In fact, it only rained for a short period of time on Saturday evening.  We never got one drop of rain from hurricane Gustav where we were, which was about 20 minutes east of Sandestin in Seacrest Beach. 

It was a lot of work, but you know what, it’s a lot of work at home too and I would much rather it be a lot of work at the beach than a lot of work and be at home, at least I am always in a good mood there, it’s hard to be mad or sad at the beach.  SK did really well.  She spent lots of time at the beach and at the pool and even a little while on a pontoon boat, but I will get to that later.  We took her and all her gear down to the beach, set her up on her own towel and she was quite content.  We even made Sophie her own sand chair underneath her towel so that she could sit up some and look around.  That sand made a great customized chair for her, whenever she needed more support we just pushed more sand up underneath her towel.  Of course she also had her favorite amenities from home as well like her swing, her boppy and of course her mama and daddy’s laps.

As for the boys, they had a great time at the beach and at the pool.  We are so glad that they love the beach as much as we do.  It just blows my mind all of the things they can find to do with just sand and water.  As our lives have been inundated with shifting priorities over the past ten months, I was also very much aware of how our priorities shift again whenever we are at the beach.  People can become so engrossed with digging holes or making sand castles or digging trenches to channel water that they will not rest until their mission is complete.  Forget schoolwork, forget video games, forget therapy, never mind that I haven’t eaten for 6 hours, I must keep digging this hole till I hit water.  I love it! 

Our place this year was just perfect for us, we were on the ground floor with our back porch overlooking the pool and the gulf.  So this year no one had to stay inside with Grey and Sophie Kate while they napped in the afternoon.  One of us could be down at the beach and one of us could be at the pool.  We had a great spot.

There are lots of stories to share from our vacation, the beach cannot be limited to just one blog entry, there will be more to come including the maiden voyage of the USS McManic as well as some other neat things that God wove together on this trip.  I will leave you now with a few pictures from our trip.

Sophie taking advantage of one of my favorite past times at the beach-the nap and those boy shorts own me, sister!

Grey had his own little spot to surf in, too cute!

Check out that hair!

We’re full on trench building in this one.

Happy Birthday sweet baby girl, 10 months old and counting!