Sunday, October 9, 2011

Prayers ..

Over the last 6 months, Samuel and our family have been blessed with the care and nurturing of several very loving nurses. One of our day nurses had to take time off last month after her husband deployed and but we have stayed in touch. She became like family to us and we miss her terribly. I just found out that this week she and her family have experienced a tremendous traumatic pain and loss. While visiting here, her sweet 22 year old sister suffered a massive brain hemmorage and stroke, was sent home from 2 local ERs when they could not detect the answers for why she had a major seizure and required CPR. She left on medication but continued to experience neurological symptoms and go into serious decline leading to her current state in a coma on life support at yet a 3rd hospital with no expectation that she will recover. I am sick with worry for this family. They are on my mind and in my prayers.. More than prayer I feel paralyzed on how to help from here as they are now in a hospital ICU several states away. I can only hope they will bring our nurse's husband home from deployment so she is not so alone right now. Please hold her up and her family with your prayers. I am praying for peace and strength as they process some very serious medical decisions. It is so impossible to understand such a horrible end to a beautiful young girl's life. God holds those answers and I know he has a plan for helping this family with coping through this horrible tragedy.

This is how much I love all of us..

This post started out about the highlights of our week and specifically updates on my recent OB appt (More on that info in a later post). After a busy week with the kids away, I was thankful for the time to do some house projects and share quiet periods alone with Sam. Once the girls returned I was eager to soak up some alone time with each of the them. This is how I came to have an enlightening conversation with Sofia over a picnic on our front porch that left me reeling at how little credit I give her for understanding the deeper dynamics of life. She shared her thoughts on the new baby and on Sammy's special needs and all about how she wants to be the kind of sister I would want her to be to her siblings.. and that she felt very loved. This is the point when my heart swelled and I felt so thankful that God entrusted me with these sweet children.

A week earlier Sofie did a water color painting after school for me and proclaimed that the art was showing how much she loved all of us (meaning our family). During the picnic she was quite candid about all of these feelings. As I watched her chatting away about how her baby doll (who along with Sammy had joined us for the picnic) was learning to eat by mouth the way her brother was doing with the help of his therapy, I felt this overwhelming feeling of peace and thanks that she absorbed things in a healthy way and was not acting out or feeling insecure. I felt so grateful that amidst all the pain and worry and stress of Sammy's condition, not to mention experiences relating to my mom's traumatic health/post cancer journey, we have been so blessed overall to experience a calm period of late. A reprieve. A gift of peace.

It was at this moment when that original blog post got hijacked. I had decided to check in on the blogs of some of the families I follow, some of which are also effected by this horrible disease. It has been a double edged sword making connections online with other families. On the one hand, these remarkable families inspire me to stay hopeful, hang on to my faith in hard times and to realize we are not alone in this journey. They have helped me find humor in some of the absurdities..and with some I feel this incredible link purely because the path we are trying to navigate has already passed under their feet. I can't put into words the magnitude of hearing someone else's view on a particular test or Dr. and then finding it fits your own perception to a T. We share something and yet it is something you would never want to share with anyone.

It is like when I read about a husband and wife who laid in bed one night talking and finally saying the words that had run through their individual minds silently a hundred million times.. that their child's life might be cut short.. that it might be a reality they need to face together. Those moments are something only certain people could read and fully understand. It is in reading those shared thoughts that I feel less alone in all of this. But it is also incredibly hard to find you are praying and feeling for so many sweet families, even though you have never met them in person. Sometimes it feels unbareable to take in all the highs and lows. Each time you check on them there can be wonderful progress or joys from happy experiences or really horrible things going on with their health battle. It makes your own worries about your own child that much more raw.. It is so painful to think about someone's sweet child (maybe some 800 miles away) fighting for their little life. You can find yourself reliving those times you were in their place or you imagine you could just as easily be in their place tomorrow. I have come to know some of these kids and because I relate from similar circumstances, it all hits me so hard. I think about how before Sam arrived on the scene, my image of a suffering child was probably that of a child from a third world country or most likely fighting cancer. But now I know all too well that cancer is far from the only threat to innocent children.

So tonight when I found very concerning updates on little Talon, a baby boy Sam's same age fighting Mito, I stopped my earlier post and took time to pray for this precious fighter and his family. Talon had only recently had his G tube placed and had just gotten over a tough period following an illness. His mom's last post had sounded so good, happy to be home.. and now things are so uncertain and scarey for them. I found myself in tears as I read that he has been in the ICU since Wednesday and is status elipticus (constant seizures) and intubated. Only last week I had a talk with our Dr about how we don't have any emergency suppository meds on hand at home for a longer seizure that could lead to status elipticus. I think our current neurologist fears how that med would interact with his other weaknesses..respiratory etc. We have had so few seizures but what he has had have at times lasted as long as 7 minutes and clusters of up to 45 minutes. It is my worst fear that we not be able to stop one and it take too long for help to arrive. With his other issues, when his heart rate has plummeted and he has stopped breathing and turned cold grey, there was little time to worry about 911.. we had to act immediately and rescue him. I can't imagine watching seizures at a bedside and not be able to stop them or do anything to rescue my baby.

I hurt soo much for this family and all the others we have met. I hate this horrible disease. It is so unfair. It is attacking innocent children and yet.. noone outside our world even knows what it is. We don't even have all the answers on Sam to know if this disease was always going to be in him or if it is a secondary disease process..or what.. too many questions and not enough answers or solutions. I know all too well how powerless this mother feels right now.

I went in to Sam's room and watched him as he slept. I cried and prayed for Talon. Sam was sleeping more peacefully.. more peacefully than the junky breathing he had last night. His ear had blood on it today and I worried about a burst ear drum but I am hopeful it is just a scratched area, however I hope that would not mean he was pulling at it which could point towards yet another ear infection to make things miserable. He has had quite a few recent rounds of antibiotics again and although we have been luckily avoiding a major crash where his gut shuts down and respiratory tanks and we end up in the hospital, I am always aware of how fast those scenerios take place. I worry about every possible taxing issue or illness. So when today was not our best day, I began to worry.. but now I look at Sam and he has been at his strongest over the last few months. I need to give God my worries and just know we are blessed for the good days.

This family just wants to blink and get back to those good days. I pray for that for them. Peace and calm over Talon's sweet body. I pray healing and strength for all suffering children. I pray that their pain and illnesses not be in vain. Lord, please reach people with their strength. Help people to be more thankful of each day and the gifts you give them. Help them to let go of petty concerns. Help them through adversity and guide them to choose to help others. Tonight I am thankful for picnics with my children on beautiful, sunny days. For daughters that are emotionally wise beyond their years. For Samuel's ease of breathing right now. For sweet birthday parties like the ones we attended today.. that remind us how precious it is that we can mark each year and watch our children grow.

Monday, October 3, 2011

While we are sharing..

So..I got stomping mad tonight at Sam's ridiculus feeding pump. Then I found myself laughing over it and started thinking about something that happened yesterday when I was over at a friend of mine's consignment sale. I had taken Sam with me which is a rarity in of itself because I am a ninny about him being in certain public settings for fear of illness etc. Anyways, this mother approached my stroller and said, "Is your son tube fed and does he use neonate formula?" At first I had to look down at Sam because I thought his wires/tubes were more covered up but it turns out they were peeking around the edge of the stroller. As I said yes and listened to her kindly offer extra medical equipment bags or formula that was of no use to her but would not fit our pump, I went into a daze of sorts thinking 'Wow.. I am really here.'

You see, I had this de ja' voo moment back at Shands when Sammy was just a month old and about to have his Gtube/ fundoplication surgery. It was during the night before the surgery and I was nervous..sick nervous. They were about to permanently change my child's anatomy for a reflux problem they had no evidence of but wanted to be sure to prevent. After the surgery he would eat my pumped breast milk entirely through the tube in his stomach and quite honestly I could not imagine anything more horrible. I was so naive then. But that night I had this moment where I imagined myself chatting up Gtube supplies and such like it was everyday business with another Gtube mom. It was particularly odd to envision, since I did not know a single "gtube mom" at the time. Anyways.. I was mad at the pump tonight for not running right and all I could do was cry and laugh that there was once a time when I could never fully grasp what this stage of our life would look like. All this prompted me to pull open my old caring bridge website and read through some of those early posts.. I guess I was trying to reconnect with that part of me..whoever she was.

As I read my emotional and completely overwhelmed posts shared during what was the most challenging days of my life, I realized I was never more frank and honest with myself and all our friends and family than I was back then. I guess I shared it all without hesitation or worry about judgement. This is interesting to me now because I can't tell you how many posts are sitting in my "drafts-that-will-never-be-published file". Those are the raw ones.. the ones that needed to be typed but maybe the world could live without reading. Not that I think anyone feels like reading my ramblings lately. With all of that in mind I am going to share something personal that really hit me in the last few weeks and left me a bit vulnerable.

Up until about two weeks ago I felt like I had done okay with balancing most things. I felt the girls have channeled through some really rocky experiences but were overall doing well. I felt pride about the love and respect in my marriage. I felt joy and optimism about Sam's recent progress of late. I was even settling into this news of expecting an unexpected 4th child. I was trying to not feel like a bomb was ticking under me. Did we somehow manage to escape falling doom and find a new somewhat manageable normal around here? That was before I entered a new world of worry, guilt and confusion.

An in-class math assignment of Bella's was returned and it showed a 4 out of 8 grade at the top. This was really strange since she knew the math and had no trouble doing the homework. NOW.. I won't go into my background but let's just say there were no acceptable grades in my house except straight As. Period. So on this 1st chapter of 1st grade math assignment, she had correctly completed all the math but did not do certain secondary requested tasks such as showing her work with an illustration or circling the matching answers in a row of 5 problems. I was concerned and so I emailed the teacher. This was actually the tipping point of several other concerns..first off her reading materials seemed entirely too easy as she was bored reading it to me and never even had to work at it. Her comprehension of it was great, but I did not want the ease of it to dampen her excitement about reading in general. There had also been this other child's graded homework packet sent home to us with no name on it that was clearly not ours or even similar to what we had sent in. So I approached the teacher and she said all was going fine.. that the one assignment was no biggie and the homework mix up was just a swap up mistake before leaving school and not what was actually collected and graded. Based on this I decided all was going ok. Then I had a chance to go have lunch with Bella at school. While there, the teacher told me Bella had just finished getting 100% on her first math pretest and was doing great. I knew she was doing well in spelling as she had been acing the tests including bonus amphibian and reptile (Let me tell you- first grade is quite different now-a-days!).

We really did not have much homework back or individual feedback coming home so of course it came as a complete shock to me when 4 days later I received her progress report showing several areas that were hardly where I would have expected them. I won't go into detail but 2 areas (lang arts and math) were less than satisfactory and several others were just at satisfactory. Pure shock hit me like a rock. This from my child who wrote paragraphs willingly in her journal at home and was jumping into chapter books...? I started worrying about whether we did not commit enough one on one time with her during the past year. Was I too tired to notice some sign she might be in left field somewhere? SO, after numerous emails with the teacher and sleepless nights worrying over whether amidst all that was going on with Sam, I somehow had failed to prepare my oldest daughter for first grade, I finally had a chance to sit down with her teacher in conference. It turns out she knows the math content just fine but somehow rushed on the actual test and like that one assignment which had wrinkled me a bit before, she must sometimes lose her focus about following instructions to the T and moved on too fast to the next one, in the end making stupid mistakes that don't best reflect her knowledge of the material. With so few grades yet, the score looked worse than it should. Pretty much the other mediocre grades reflected her not really showing much effort when she knew it like the back of her hand. In my opinion that may actually be because it is unclear what is expected of these kids from the start and if they are bored or not focusing seriously, it shows.

So why am I venting this all here? Because amidst all the life and death stuff we have been faced with over Sam's health since birth, I never saw this coming and it rocked my world. How will I ever make it through to highschool graduation if I am a mess over whether my child crosses her Ts perfectly straight or forgets to elaborate her answers more fully and in better handwriting on her reading test? I asked for handwriting samples of S+ work and let me tell you.. practically a microsoft word sample. I do want high standards for her and this is why we chose the structured charter school she attends, but it does seem that the jump from everything is perfect in Kindergarten to boy.. you could seriously screw it all up in first grade is amazing to me. I did have to laugh that on the math test one question that she missed was asking her to write out a numeric sentence for addends of 5 and 3 and to show the sum. Easy enough. My child then goes on to write out, "Five plus three eqols ate" instead of showing numerically 5+3=8 (the correct answer). I just had to laugh again to myself when she explained to me, "But Mom, it asked me for a sentence!". DUH!

All of this made me pull out my old journal notebooks from Fairfax County schools in Virginia..The year was 1985 (first grade).. The Subject: The love of my mother.. on each and every page with pictures. :) Comparing the writing samples in that book with how my daughter writes now is like night and day... and I was considered "gifted." We expect soooo much more now from these kiddos. You sure are not in Kansas anymore, Dorothy! I hope in the process of trying to raise the bar, we don't end up dashing out the parts of growing up that are special and build character.
Here was my writing sample from the first month of first grade..

and now here is Bella's...

So... the moral and resolution to my long winded story is that I need to chill out and breathe a bit. If anything this stuff with her brother has made her stronger and I doubt it caused any lasting issues. We have gotten through worse and this will hardly be the last time I am taken by surprise. We will be explaining to her how she needs to better slow down and apply her knowledge beyond what she does on homework etc.. and I will no longer just listen to a teacher saying all is going great.. right before I am surprised by this type of news. She has a great teacher and I hope she now understands that we actually do want to be informed of how our child is doing. I think they must have some parents who just don't care.

I guess I am learning how all this works. I know what a smart girl she is and I don't want to apply all the pressures I grew up with of succeeding for someone else.. but instead I hope to build her up so she will want to succeed for herself. I also need to give her a break.. as we just discovered that she did not even understand that class work had grades, which actually matter and could effect her future. She thought making Straight As meant working very hard to write the perfect letter A. Bless her sweet first grade heart. SO there it is.. sharing some raw parts of my parenting journey.

Sunday, October 2, 2011


Last week was Mitochondrial Disease Awareness week and although I wanted people to know about this too common, greatly unknown and often fatal disease, all I could really think about was how much I just want us all to wake up and give thanks for our blessings. Awareness to me really means being informed so we better understand, support and show compassion for something outside our usual understanding. The ultimate awareness for me seems to surround figuring out how God would have me best live this life. I am still seeking knowledge on this and in some ways fully reaching this type of awareness may take the rest of my life. For now, I work at it each time I count the blessings in my life. I look at my children and even when they drive me nuts or make me worry or require every bit of my energy.. they are indescribable blessings.

Tonight I found out my sister, and their family of 6, were in a pretty big car crash halfway around the world today in Belgium after a drunk driver rammed into their car. It could have been tragic, but by God's grace, they are doing ok after a pretty serious scare. My brother in law, who had sustained a previous back injury during a past deployment, is apparently experiencing problems with it now since the wreck. I will be praying for relief and healing for them all. It is so hard to be so far away.

There are some prayers for local families weighing heavy on my heart right now. Our community lost another brave soldier and another has lost his legs and one arm. It is such a tragedy for these families. Such sacrifices for all of us... I can't even find the words. Two personal friends lost parents this week. I hope God embraces them and reminds them of the beauty they shared in their lives.

I have a praise too for the addition of my cousin's first baby.. what joy it is to see a family born! I know she will make a wonderful mother.

As for our family over the last few weeks, it has been a busy time, but overall things are going okay. Knock on wood. Samuel is back on antibiotics within 2 weeks of the last round for a staph boil that appeared on his back but is doing okay. It was concerning since it showed up all of a sudden due to the wires of his heart moniter becoming exposed and cutting into his back. The stressful part for me was trying to understand how it went unnoticed for several days. It looked like something out of nursing home abuse weekly. I had not seen him fully nude myself for almost 4 days since the nurses do most of his changes and baths except on the weekends when he is fully in my care again. On this one particular Thursday the nurse was prepping him for a bath and called me in to show me this really red and open sore that was white at the center and very painful to the touch. The redness extended across half his back and I was left feeling so upset that I did not know it was there for probably several days. Sam does not communicate like other babies and has endured such pain, that he is not quick to let you know somethings.

Meanwhile the exposed wires had blood on them and were probably not even of any real use at monitering his vitals in their state. I will no longer take for granted that trained professionals are checking him over, dressing him etc.. Luckily it seems under control since starting oral and topical antibiotics, but it could have been a much worse outcome. It is always fresh in my mind that he does not seem to heal easily and his symptoms can culminate in an overall serious crash after the slightest taxing insult to his system.

I have some prayers on my heart right now about other issues I am working through but they are too complicated to flesh out here. I just need to take some time to listen to what God would have me do and stop questioning myself so much. We have alot coming up between appointments in Atlanta and a consultation with all his therapists to assess where he is at right now. I feel pretty good about that since he is cruising now around our coffee table and is standing up against whatever will hold his weight. He wants to walk badly. He does sometimes still seem very weak in the trunk and sometimes I have difficulty getting him to hold his own weight in a standing position when I hold his arms. For now we are rooting on every new accomplishment. The last and best peice of news is that Samuel is officially on the growth chart around the 5th percentile for weight. He is not even approaching it on height but, hey my roly poly is at least tipping the scales at 22 lbs and growing!

The girls are busy with school and soccer. They are loving Saturday morning games and I think Bella actually "gets" it this year. She is not off pulling daisies when the ball passes her way. Sofie was born to get after that ball as she is more the natural athelete. I love watching their unique skillsets and personalities develop. God is so good to make such a diverse world. I have another OB appt this coming week. I have not posted much on the last one as I really don't know that there was much to post. They did another very thorough ultrasound and they said the kidneys were slightly dilated but not to worry since sometimes they see that with boys.. They will watch it at this next appt again since they also did not get a good look at the heart and will need a retry. In the meantime, they had me do a 24 hr urine test and bloodwork to get a baseline for the preeclampsia concerns from my prior history. I picked up a copy of the labs since the Dr had not called and I am keeping my records due to the history from before. You would think I was requesting records of natl security for how strange the records girl acted at my request. Labs did show proteins in the urine and some off bloodwork here and there, but nothing I would think much of in relation to what they were before Sam's birth. I think they would call me if there were any concern..I just don't want to go through what I did before. I think I would fall apart. Well, my Gator team just got smashed and I am feeling rather tired and done for the day.