web analytics

kmtroupe@gmail.com

Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Latest Posts

God lives very close to the floor…

*This post was published on May 11…If you are looking for the most current update please follow this link   Amplitude…well blended and balanced “I told her that I still take medication, and every morning I take that little pill with a prayer of thanksgiving that God made a way for those of us who suffer like this on such a broken planet. And, I told her that in the darkest moment of my life, I discovered that God lives very close to the floor, very near to those who are broken.”  Sheila Walsh, God Loves Broken People While hanging in the abyss of time in a hospital NICU watching Isaac heal I have had the time to finish a few books I have been in the middle of. The quote above is from God Loves Broken People: And Those Who Pretend They’re Not by Sheila Walsh. This book is a great read and has been perfect for the life we have right now…broken and hurting but trusting and having hope for an abundant life to come for Isaac. There are many, including us, who are living close to the floor in prayer, right where God meets us. We sit with him, touch him when we can, we beg God to fix him, make him whole and healthy and strong enough to come home. We already love him more than any words can speak. I have to pry Theresa away from that isolette, his little cocoon that has been all the life he has ever…
Read more

That I might show you my power…

This verse from Exodus continue to reign in our lives. I know I shared this verse just a few days ago, but we cannot hold back using it again as we have felt the tremendous love from all who read this blog…and share it. But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth Exodus 9:16 We often hear from people that we must be very “special parents” to not only have one child with special needs, but now two. We hear words like gifted, special, patient, strong…blessed. To be honest, most of the time those words just roll off our backs…and we think, blessed? As Matthew is rubbing his own poo into the carpet or taking his clothes off in public to regulate his body temp. Just a few days before Isaac was born I was wallowing in all of this “blessing” as Matthew was doing his happy yodeling noises as his two older sisters were performing in a ballet recital. Several people turned around and gave a little smile, a nod saying that he was okay. But, there was one person who turned around over and over and gave me the “get him out of here” look. I moved to the back. The back is where we spend a lot of time enjoying the many activities our family is involved in. I determined in my mind that I did not move because Matthew…
Read more

Isaac update…”bubble wrap” needed

Your prayer response has been nothing more than humbling. Your notes of encouragement and scripture have been what has kept both of us going through this whirlwind of the past few days. The most immediate need of prayer is for Isaac and the surgery he will be having tomorrow (Tuesday) to repair his EA and TEF issues. What those stand for are Esophageal Atresia and Tracheal/Esophageal Fistula. In the language you and I use the first one means that his food pipe goes down, stops and has created a pocket. This means secretions and food have no where to go. The windpipe goes to his lungs…but also continues on to his stomach where the esophagus was supposed to go. The surgery will be to make all of the right connections. Please know that I have completely oversimplified this explanation…prayer is needed not only for the surgery but also for the recovery. Isaac will not be able to even try to eat until a week or so has passed. Combine this feeding difficulty with his cleft palate and lip, and any cranial nerve swallow problems, Isaac will have quite a learning curve just to eat. Many of you have asked how we are doing. I had a thought on the way to the hospital this morning after seeing and reading many of the messages you have all left. Your constant prayer has had an insulating effect on us much like being wrapped in bubble wrap. We can feel the bumps of what is going on around us…
Read more

For such a time as this…welcome Isaac Gabriel Troupe

So, not your typical day. Life was going on as normal as life can be in our house, and all of a sudden… Theresa and I are proud to announce the arrival of Isaac Gabriel to this world. Born this morning (May 6) at 8:37 a.m. and weighing in at 5lbs 3oz. Not what we expected today…almost a full 6 weeks earlier than “planned”. And I mean to emphasize planned. We just had this conversation on our way back from U of M on Thursday about how we can sometimes take on the roll of God and plan, plan, plan. By doing so we can nearly put God in a box. We prayed that His will would be done and all of the details would work out. He did just that. He chose the time, He chose the place. One song that came to mind as we have been gearing up for this journey was one by Wayne Watson…For Such a Time as This.  chorus: For such a time as this, I was place upon this Earth, To hear the voice of God and do His will, whatever it is. For such a time as this, for now and all the days He gives, I am here, I am here. And I am His, for such a time as this… We have been preparing, praying and waiting for such a time as this. A great scripture to go along with this thought is found in Exodus: But I have raised you up for this very purpose, that I might show you my power and that my…
Read more

His Name: Isaac Gabriel Troupe

You heard it here first folks! His name will be Isaac Gabriel Troupe…Our fifth child to be born (tentatively) on June 8, 2012. We liked Isaac because Isaac means “laughter” which is what many people did when we announced we wanted to have another child. And, Gabriel because Gabriel means “strength of the Lord” which we hope God grants to him and to us through him to begin and follow through on this journey. A big thank you to all who have been diligently praying for all of us in the Troupe household. Also for sticking with this blog and prayer chain as we have taken a small break away to “stay the course” and gathered the much-needed information we need. Throw in the mix a change in duties at my workplace, Easter weeks and Matthew adding some of his own dictated home improvements…well, you can imagine how crazy things have been. Now, for the information many of you have been asking for and to answer the question of “What is going on with Isaac?” Many of you have prayed for us to get the needed care for Isaac (and Theresa) “out of network” from our insurance provider. Our provider is great, but the specialized care needed for a CHARGE Syndrome birth, with the multiple complications that can arise, it was crucial for us to arrange for birth and after care at the University of Michigan, Mott’s Children’s Hospital. Your prayers and our’s were answered and granted after jumping through a few hoops and…
Read more

Lush grass or cold rocky crags?

Lush grass, fertile soil, butterflies, meadow flowers, frangrant pines, soft ferns, a beautiful babbling brooke…The valley has all the makings of a perfect postcard picture. So, why do so many of us long for the mountain top experience? I finished a great book recently by Andy Andrews titled The Noticer: Sometimes, all a person needs is a little perspective. A casual story about a man who mysteriously shows up in people’s lives at an opportune time and helps them with “a little perspective” of the situations they find themselves in. It was the perfect read for the journey we are on right now and how the journey is about to become a much larger expedition for our family. As many of you know from our recent posts, we are expecting a new addition to our family…a son who is set to arrive at the end of May. If you are new to Lessons from Matthew you can catch up on the previous posts Can Lightning Strike Twice? and Lightening Update. We haven’t posted in a few weeks while we have been gathering information on what kind of expedition we may be facing with our new son. Without going into all of the details, there is substantial enough information in the different ultra-sounds and fetal heart-echo to determine that our new son may join Matthew in the CHARGE Syndrome corner. The puzzle pieces I mentioned in past posts are coming together to form a familiar pattern and picture. Nothing is certain for sure, but we are beginning to assemble the “team” that will be present…
Read more

Lightning update…the short-term forecast

A quick update for all of you have been praying fervently for us over the last few days. We had the 3-D ultrasound today and it did confirm that our little boy does in fact have a cleft lip and possible palate. It appears to be unilateral (one-sided). As far as the ears are concerned…we will have to wait until we send the results to out geneticist friends and allow their expert eyes to take a look. We were able to get some good looks in between his hands AND feet blocking his face! We have to be honest here and say that our drive home was a little somber. It usually takes a few days to process this kind of news…we know, at least in the short-term, we will be looking at some surgeries to repair the cleft…as far as the rest of the puzzle pieces, we will have to wait and see until he graces us with his presence in late May. As a family, we covet your past and your continued prayer for us as the pieces are put together and we see a clearer picture. Please share this news as you feel led…Kevin, Theresa, Hannah, Megan, Matthew and Sarah Anne…and baby boy!

Reach for the stars…

It has been a week of praying, reflecting and preparing for what is to come…not unlike this season we will embark on in the coming weeks that many call lent. I will get to an update on where we are at with our son-in-the-making after a brief story of what Matthew was up to this past week. When I put Matthew to bed on Sunday night I noticed a plastic star in his mouth. It wasn’t the usual puzzle piece but I didn’t think it was too out of the ordinary at the time. During my drive to work the next morning I had a realization thought that made my heart skip a beat. I immediately called Theresa and asked her to remove the half shelving unit from his room…a shelving unit he is fond of moving around to different locations in his bedroom. Matthew has several little stars placed on the ceiling around the light fixture which will glow in the dark when the light is turned off. None of them were missing when we snapped the picture shown here on Sunday. He had pulled one of our stools from the kitchen island into his room, placed it on top the shelving unit and proceeded to try to climb up his therapy swing. The thought was…remove the stool, remove the danger. My apologies for the bad photo quality…it was not my highest priority at the time…not bad though for a stop-and-go, grab the son manuever, huh? Apparently, the stool was optional and not needed. The only way he could have reached the top…
Read more

Can lightning strike twice? Please Pray, it may have…

According to NOAA (National Oceanic and Atmospheric Administration), the odds of getting struck by lightning in one’s lifetime is 1:10,000. One would have better odds of this phenomenon happening than to have a child born with CHARGE Syndrome (1:12,000). Yesterday we had the usual monthly appointment with the OB with Theresa being at 22 weeks gestation. I will let her, in her own words describe the morning: “…As I was showering and getting ready yesterday I was thinking about the day ahead and the much-anticipated ultrasound to hopefully find out the baby’s gender. As I was thinking about the baby I was overwhelmed with the thought that THIS baby was meticulously created by God for our family. Down to each hair (or lack there of) on its head. Whether a boy, or girl it was what God planned for our family and would be the best….. While the news received just moments after being told “it’s a boy!” was shocking, and not what we were expecting, I think we are better prepared than most to receive it. We have been walking this “special” road for almost 11 years together already. Knowing that Kevin, my rock was sitting next to me to continue to hold my hand through this next portion of our walk was my encouragement….not that it could stop the flow of my tears. After finding out the news that our baby was going to be physically not as perfect as we hoped I was still quite emotional as we stopped…
Read more

Wrapped in a papoose…

After nearly two years of blogging “Lessons from Matthew” some posts get more attention than others when it comes to people sharing and ones that get internet traffic through being “googled”. One of these posts was the one I wrote with the title “Willing or unwilling…?” from September of 2010. I want to take the time as I approach the two-year mark to revive a few of the older and popular posts. If you have a favorite please let me know…I am in the process of compiling chapters of the printed book version of “Lessons from Matthew” and would love to have any suggestions to add to the pages of the book. So, here is “Willing or unwilling…?” I think I am safe to assume that most of us would not rank a visit to the dentist as one of our favorite things to do. The annual or semi-annual ritual of having ones teeth cleaned can put even the most detailed person on edge. Afterall, the visit really is a report card of the progress of our daily regime of brushing, flossing and laying off the sweets…or lack of. Personally, I have experienced the good and the bad of an office visit to the dentist. The bad included the final demise of a tooth that had a root canal many years ago, cracking in half years after that and finally progressing to the point that it had to be pulled. Many of you may be squirming in your chair at this point…I…
Read more