Tuesday, October 26, 2010

Shelter in the Storm

I LOVE blogging! If you read my post as of last night you know that yesterday was a bad day. It was one of those days that guilt and grief took hold of my joy. But last night I got it out had a good cry. In fact, I havent had one of those breakdown type of cries in a long long time, and I think I was due. There is something about falling on your face before the Lord and letting go of everything that had built up in your heart and mind. And last night that is what I literally did.

I gave all that anger, guilt , grief and sorrow that was stealing my joy to my Savior. I stopped letting satan convince me that my God isnt big enough to take it from me. Of course I know that God wants all my burdens, I just sometimes forget that I have to surrender them to him first. He is there with the open arms. I am so thankful for that. If I have to walk around with what I felt last night I just dont know how I could get out of bed and breath each day.

So this morning I feel relieved. I am still struggling and it might be that each hour I have to re-surrender my thought to God but that is my focus. Give it to HIM until this storm passes. HE his my shelter today in the storm ,HE is my protection from this anger that is trying to control me right now, HE is my hope!

Fitting that we have Tornado watches today. I have a bit more of a peace about those today too ;-)

Monday, October 25, 2010

My Anger Vent

Warning I am having a pity party today! You were warned...

Today is just one of those days that I allow myself to feel bad. I try to do too many of these or at least I try not to stay in them for too long. About a year after James was born I realized that I needed some counseling to deal with the guilt I have over James' condition. During that counseling I learned that guilt and grief is very cyclical. I think I had been told that before but when you are so frustrated that you can seem to "graduate" from one of the stages it is good to have a counselor remind you that you are "normal" ( whatever that is) So that means that you can find yourself in acceptance and be trucking along with life and the BAM! you are smack dab in the middle of anger. Or at least that is where I find myself today. So here goes I am going to vent what I am angry about in hopes that it will make me feel better.

I am angry that people stare and my child! He is not some side show that you have permission to gaulk at as we try to grocery shop or buy a Halloween costume.

I am angry that it is ME that has to make others feel comfortable when their children stare. YES! children are curious but it is YOUR responsibility as a parent to use that moment to teach them manners and about tolerance.

I am angry that people feel that it is OK to just walk up to me and ask "what is wrong with him" I just want to scream at them "How rude! What is wrong with YOU"

I am angry that parents let their children come up and asks me why James is in a wheelchair and they just sit there and wait for an answer too. Dont use your children as pawns to ask rude questions you really want to know as well.

I am angry that I missed all those milestone moments that other moms gets. I read posts about them and it just kills me that I wont get those moments

I am angry that I have to worry about will James ever be able to live on his own.

I am angry that I have to be the "bad" mommy and cause my son pain

I am angry that my son is caused pain at MY hands!! ( it deserved two)

I am angry that my husband's family is so clueless and selfish about the life we live with James that they dont even bother see our side. I am angry that James will only have one set of grandparents that care and love him unconditionaly

I am angry that when we are invited to a playdate I have to do my homework to make sure James will have something that he can play on.

I am angry that people just dont get it.

Tonight I am ANGRY!

Jesus, I give you my anger. Please take it from my heart and my mind. I am powerless to do it on my own and I need you to free me from this tonight. Ephesians 4:31 Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice

Tuesday, October 19, 2010


I just wanted to post a thought that I have been pretty excited about this evening. I am looking to order James quad canes because he is doing SO well on his walker!!! We are going to start teaching him how to use them. I am going to take it slow because I dont want to frustrate him but this kid just keeps raising the bar!! I cant keep up with him. Nov 15th we go to St. Louis for his 4 month re-check and I cant wait to see what Dr. Park thinks of his progress.

On concern though, I have been noticing that his right hip is turning out more and has started to make a popping sound :-( . I am hoping that it isnt a big deal but it doesnt sound good for his hip. We had hoping it would go completly back into socket but I dont know if it has. Please pray that this will be an easy fix and we can avoid a surgery is 2011!!

Friday, October 15, 2010

Take my Breath Away!

Yesterday I went to pick up James from his 2nd day of pre-school. I tried my best to be more on time instead of an hour early like the first day. But I still was a little early... I still have to be me ;-) As I was sitting in the line I got to thinking about all that we have been through this summer.

We have traveled 10 hours aways from our home after a year of research. In hopes that Dr. Park in St. Louis would be able to help James to a vertical life. We sat by our son's bedside while he was in the PICU and then struggle in those first few days of Physical therapy. Remember this

I sure do! It was just 19 weeks ago when James was struggling to stand and hold his own body weight and we were so thrilled! Just 19 weeks ago James took those first assisted steps in the PT department at St. Louis and the shock was overwhelming. I sat in the carline and did my best to hold on to those memories. They have a funny way of getting away from you, and that is why I blog. I love going back to those days and reliving those raw emotions.
Back to the carline..... I thought about bringing James home for the 2nd time in his life and he had a new body. We didnt have to pry his legs apart to change his diaper and he didnt cry in pain when his legs would spasm ( because they dont anymore) I thought about all the hardwork James has done and still has left. He and I have spent a lot of time together. During the 3 week program at Birmingham this summer James and got even closer, if that is even possible.
So turning his care, even if a small part, to school has been hard for me. So I sat with the other moms and wondered what their stories are. I am sure they have one too. When I saw that it was time to walk up to the door, I was excited so see James again. What I saw truly took my breath away.
They opened the door and my son that just 19 weeks ago couldn't hold his own head up because he was so weak, WALKED to me! I wanted to cry but decided that I didn't want the teacher to think I was more of a nut case than they already do (ie sitting in the car line for an hour). Instead I tried my best to stop time! In fact, I prayed for God to just give me a few extra seconds to enjoy this. It was beautiful. I know it was just a short walk in reality but I saw Independence. I saw a young man going to college. I saw a grown man living independently. I saw what true hope looks like. So many have spend 3 years trying to take my hope away and replace it with "reality" Thursday Oct 14th my hope WAS reality!!! And I enjoyed every second of it that I could. I thought about pulling out my phone for a video but I didn't want to miss any of it myself.
And that is just his first week of pre-school! If you are like me you just cant WAIT to see how James will shatter all those ceilings that people have tried to put on him in his short little life.
I know this is James' blog but I cant let this day pass without making mention of Infant and Pregnancy Loss Awareness day. Those of you that know me well and know our story know that today is a special day of remembrance for our family. I wanted to praise my Savior for giving me such a joy in my life. I have been so blessed and although we have known true sadness, I am a more loving person for it. I love harder because I know how your world can change in a moment. And so many mothers and fathers are hurting. I am glad that there is a day that they can remember and celebrate the love that they share.
My work with Now I Lay Me Down to has really opened my eyes to all the families that are in our community that have suffered such lost. I am so honored to have been allowed to document those precious moments with their children, but my heart breaks for them as well. So if you would take a moment and share a prayer for these families.

Monday, October 11, 2010

Dear Pre-School Teacher

I know that all Parents love and adore the children that they send to your classroom. But James is extra special to this Mommy. You see, James is the result of a broken hearted woman that so desperately wanted to become a Mommy to a baby here on earth. James is literally the answer to my prayers. I know at first you will see his physical disability. I cant change that, but it is my prayer that you will quickly see the smart, loving, tender-hearted child that I call son.

We have met and talked about the goals that we would like James to meet this year in your class, and those are important. I want to support you in your efforts to help James meet those goals. I will always be on YOUR side in James' eyes. But please know that those are just surface goals. I am trusting you with the most precious part of my life. I am trusting that you will begin James' experience with school in a positive way. I am trusting that you will treat James with the same determination that you share with all your students.

James needs to be pushed. Please do not be afraid to correct him in a loving way. Look beyond his wheelchair and walker and see that he is ALL boy. He needs boundaries and rules like any student. Those days that you are frustrated with him and he just doesn't want to cooperate with your lesson plan....please take a moment and breath. Before you add another label to his already growing list just breath. Remember that he is just a boy and they are stubborn regardless if they can walk or not.

I know that other moms might not be so worried about sending their children just 2 days a week, but this Mom is different. My prayer is that we are a team, and that you are patient with me as well. Just know that my heart is fragile and letting go of something that I prayed so hard for it difficult. My head knows that this is good for James but my heart is having a difficult time knowing that he is not safe within my reach. So I am going to try and breath myself but please be patient with me as well.

Thank you,

A Self Proclaimed Helicopter Mom!!

Friday, October 8, 2010

Happy Birthday Sweet Baby James

Today is a mix of emotions for me. I am torn between complete joy and utter fear. Of course the birth of my son was the most amazing and beautiful experience, even if it was such a surprise this day 3 years ago. I thought you might like to read the post I wrote while I was sitting all alone in my hospital room and James was in the NICU. Here is James' birth story.....

October 8, 2007

Well lets see where to start.........

Friday Oct. 5th I went in for my 32 weeks appointment. Not expecting anything out of the ordinary, but I happened to mention that James wasnt moving as much as he normally does that time of day. So the nurse said lets just double check, so they hooked me up to the fetal heart monitor and tracked his movements and heart rate for an hour.

Dr. Conrad came in and looked at the strip and said that everything looked just ok. Well my heart rate of course went WAY up because "just ok" wasnt what I wanted to hear. So Dr. Conrad took me into the ultrasound room to see what was going on. And I could tell that something wasnt right because he wasnt saying anything and he was moving the ultrasound wand around a lot. I asked what was wrong and he said that my fluid was low. Levels are supposed to be over 8cm and mine was 6.5cm so he said that he was putting me on bed rest for the weekend and that I had to come back in Monday first thing. He said to come prepared to go to the hospital to be induced. I just walked out of the office without asking any questions ( which is NOT like me).

I was in so much shock that I couldnt even think of anything to ask. I spent the weekend on bedrest and drank a swimming pool full of water! Josh and I pack everything up just in case, and Monday morning we went to the office. They hooked me up again to the fetal monitor and Josh and I sat in the little room just waiting.

Dr. Conrad came in again and this time I could see something wrong when he looked at the strip. He took us back to do another ultrasound and this time the levels were 3cm. The doctor sat down and told us that we are having our baby today because my water has broken. He said that I had a very high and slow break that has been leaking for probably a week. He sent us straight to the hospital for induction.

We got to the hospital at about 12 noon and were admitted for the induction. The started pitocin wide open as soon as I got in the bed. At this point I was very high closed and as green as can be. At this point the Neonatologist came in to talk to me about what was going to happen. He told me all about the vaginal delivery process because that is what we thought was going to happen. Josh and I were nervous but felt that we were in good hands and and family and friends started to show up it felt just like a normal labor.

After about an hour in the Pitocin I started to feel the contractions some. But I was able to handle them and James was doing well so we kept going. I was even able to take a little nap during this time. Josh and I talked and played cards for about another hour then the BIG contractions started to hit. I was proud of myself at how I was able to breath through them. They were coming every 2 minutes at this point and were very strong. The nurse came in and checked me and I was 1cm and 50% and -2 station. So the pitocin was working and I was progressing fairly quickly.

At 5:00pm Dr. Conrad came in to check me. And I was 3cm and 100% but James's heart rate was started to dip. Dr. Conrad sat on the edge of the bed and told me that he wasnt liking what was going on with the baby. He said that his heart rate was dipped like it would at the end of labor and that he didnt think James could handle several more hours of labor. He wanted to do an emergency c-section. I started to cry and at this point I was terrified. I was terrified for James and for having a c-section. I was so happy to see my Mom's face as they were wheeling me back. But I knew that Huntsville Hospital is a wonderful hospital with top notch doctors and a brand new state of the art NICU .

So at 6:00 I was in the OR They gave me a spinal epi at 6:10 and in 8 minutes James was out! 4lbs 8 oz and 17 inches long. I heard the smallest cry ever, but it was the most beautiful sound I have ever heard. They showed him to me for a quick kiss and Josh was able to carry him to the NICU. I will never forget the doctor and nurse talking about thier new boat and lake house while they sewed me back up. It felt like I wasnt even in the room. I wasnt feeling any physical pain but my heart had just been taken out of the room and whisked away where I couldnt see.

While I was in the recovery room Josh came back down and showed me the pictures and video of James's first moments in the world. He scored a 7 on is apgar and was put under the oxygen tent right away. By the time that they wheeled me to the NICU to see him they had put him on the ventilator and started IVs and monitors. All the emotion of the day flooded me at this point and I fell apart, but I was also so happy to see his sweet little face. It was a day that was scary, but yet the happiest day of my life.

As I sit here in my hospital bed, I cant help but wonder when I will get to hold my baby. His little face was such a blur as they took him away from me. All those wires and tubes coming out of him make him look so much smaller than he already is. All they let me touch was his little foot, and that just doesnt seem like enough. Doesnt he need to know I am here. I feel like he has been ripped from the only safe place he has know, but I guess it wasnt so safe after all. I just feel so guilty that my body has betrayed him. I just want him to be safe and in my arms.

I dont know when I will get to hold him but I hope it is soon. They have told me that they have started a drug into his vent to open up his lungs. I pray that there aren't any bad side effects from having to be on the vent and the drugs they are giving him. Nurse just came into help me down to go see him. I will update soon!


As I re-read that birth story, I am struck by just how simple I thought it was all going to be. I thought I we would bring a baby home in 3-5 days and it would all just be a story we told him. Little did I know that the next 30 days would be hard but they are just the beginning of James' story.

A letter to James on your 3rd Birthday,

Wow! These past 3 years have flown by. It seems like my last breath you were this teeny tiny little baby that was the size of a beanie baby. You have overcome so many obstacles in a short 3 years. This year you have amazed me even further. I am so proud of you James. I proud to be called your mother. I fill up with joy and pride when people comment on how beautiful you are and your wonderful personality.

At 3 years old you have more determination in your little body than I have seen in most grown adults. When I take you to physical therapy everyday, I know you would rather be home playing with your toys, drawing, or watching a Blue's clues, but you go with a smile on your face. You work so hard everyday to just do simple tasks but yet you still find the humor in life to giggle and laugh. Some days I wish I could just curl up with you on the bed and we could watch movies all day. I hope that you know that Mommy is trying to do my very best job at helping you be an independent adult. I know you get frustrated but thank you for working through it and fighting on.

You have touched so many lives this year. You have been in 2 newspapers, on the local news, and had a whole community came to your carnival. It must be the smile!! Your Daddy and I love you for all that you are now and all that we know you will become! There has never been one second of one day that I have not loved all of you. I know that this life might be harder for you because of your legs but I know that if any child can overcome and make the best of it, that is YOU! Me and Daddy will always be your cheerleaders.

Today you turn 3 years old, and I hope that you are having a wonderful day. I hope that this year brings so many wonderful things for our family. Last year we got to watch you take your first steps. I cant wait to see what you do this year!!

I love you Sweet Baby James!