Lessons From a 5 Year Old

This little boy right here rocks my world!  Gage has such a fun personality and is full of wit, mischievousness, sweetness, and just the right amount of spice.  My mom calls him an imp, a title which definitely suits him.  He says the funniest things and can always seem to make us laugh.  He is also my new spiritual hero.
        Last week as I was running errands with my kids, I was also on the phone scheduling an appointment to meet with the neonatologist.  (Yes, I was on my cell phone while I was driving a van full of kids.  SUE ME!)  My daughter Davis heard me tell the doctor that I was 32 weeks along.  When I hung up the phone, she said "Didn't our cousin Zach die at 32 weeks?"  This led to a conversation about what happened when Zach died.  All the kids were listening as I told them that yes, Zach died when his mom was 32 weeks along, but in the case of Zach, nothing was wrong with him.  I told them how there was a blood clot in the umbilical cord and that's what caused him to die.  I also told them that since we KNOW something is wrong with Flint, the doctors are watching him and me both very carefully so that hopefully, we can avoid the same outcome we experienced with Zach.  After a small moment of silence from all the kids, Gage spoke up from the backseat: "I just want Flint to come.  I don't care if there's something wrong with him, I just want him to come."
          After my emotions and fears from the last couple of weeks, this was just the reality check that I needed to hear!  Who cares if something is "wrong" with Flint?  Don't I love him and Heavenly Father enough to willingly take him into my life and provide him with whatever he needs?   Gage's wisdom and love immediately brought me to tears, and back to reality.  I have since been so grateful for his demonstration of childlike faith and unconditional love when it comes to his little brother.    
          Gage and I also had a conversation at the very start of summer that has continued to play through my mind as we have progressed through this experience with Flint.  While in many areas of his life, Gage is an absolute dare-devil, the swimming pool is NOT one of those places.  He has always been a little timid and worried whenever he gets close to the pool.  His little brother however, has NO FEAR when it comes to the swimming pool and usually spends our whole visit at the pool running off the diving board into my treading water, pregnant body, waiting arms.  I really wanted Gage to try out the diving board, because I knew he'd have a lot of fun, so I began to remind him about the last couple of summers at the pool.  Our conversation went something like this:

 

Me: "Gage, do you remember a few summers ago, when you didn't even want to go into the big pool but would rather hang out only in the baby pool?"

 

Gage: "Yes.  That was kind of silly."

 

Me: "Ya, it was kind of silly, huh?  You were so afraid to go into the big pool, and I kept telling you to trust me.  We could go in together and I would keep you safe, but you didn't believe me at ALL.  Now though, you do it all the time and it's no big deal, right?  In fact, you'd be really bored now if you hung out in the baby area whenever we came to the pool.  You have a great time playing and you're not afraid anymore, are you?" 

 

Gage: "No.  I'm not afraid of the big pool anymore, as long as you're there with me!"

 

Me: "Well, do you remember last year, how you finally wanted to play in the big pool, but you were too afraid to jump into it from the side? I kept telling you to trust me.  I promised I would catch you and you would be just fine, but you didn't believe me at ALL.  Now though, you do it all the time and you have a great time doing it.  In fact, you'd be really bored at the pool if you didn't get out every once in awhile and jump in from the side."

 

Gage: "Yup!  I'm really good at jumping in from the side!"

 

Me: "So Gage, you were really afraid of doing all those other things, but now that you've done them a few times, you're just fine and have a great time, right?  So why don't you try going off the diving board and trust me that I will catch you?  I promise you will have a great time and wonder why you were ever afraid to do it in the first place!"

        
         Well, my logic failed to persuade him to try the diving board, but my own words to Gage have come back to me over and over again as our new reality with Flint has unfolded.  This time though, they are not my words, but Heavenly Father's:  "Jessica, I know you're afraid, and that you're having a hard time believing me right now, but TRUST ME!  We will go through this together and I will keep you safe.  I will catch you when it gets too hard and you will be just fine.  Just trust me and I promise that someday, you will realize what a great experience it all is and wonder why you were ever afraid to do it in the first place!" 
         Through all of this, I have often wondered what exactly I should be praying for.  What is the Lord's will for Flint and our family?  What is my role in preparing for Flint's arrival?  I have received frequent enough impressions to know that regardless of what I may want or pray for, Flint is not going to have the life I would have planned for him when we decided to have another baby.  However, he IS going to have exactly the life Heavenly Father planned for him, and I get to be a small part of that experience.  I am finally learning that the most important thing for me to do in all of this is to trust Heavenly Father, walk to the edge of my certainties, and JUMP.  I know God will catch me. That is one thing of which I am very certain!

SUMMERTIME!!!

               We’ve been back from our last summer trip for a week now, and the kids started back to school today.  They were SO excited this morning they could hardly eat, and I am excited for a new year with wonderful teachers and classmates.  With everything going on with Flint, it will also be a challenging year for them, but I anticipate great growth and love, and I know they will rise to the challenges they will face!
                This was sort of a hard summer, only because we started finding out about Flint’s challenges right before school got out and we’ve spent the majority of the summer wondering and worrying about him.  Being pregnant anyway, plus beginning a “mourning” process for our “perfect baby” has left me drained and with very little energy.  All things considered though, we had a great time as a family and still got in two vacations, which were very needed and wonderful distractions to have.
                Here’s a little taste of what we’ve been up to this summer.

Brock did a few home improvement projects with his "helpers...."

 

My wonderful husband brought me flowers when we celebrated 11 fabulous years of marriage...

The kids had fun at a few "Build and Grow" workshops at Lowes...

 

 

Aunt Meg came to visit... 

We stopped in Oklahoma City for a brief visit on the Riverwalk on our way to Iowa for the 4th of July

 

 We hung out in Ames and celebrated a wonderful 4th of July....

 

 

We visited some of our favorite friends and play areas from when we lived there....

 

We saw this HUGE geode, which was extra exciting to our rock-loving 7 year old...

 

Enjoyed lots of fun pioneer activities in Nauvoo, IL....

 

Hung out in Kansas City and explored a bit...

 

Enjoyed a few movie nights as a family... 

 

Our amazing kids treated us to a GREAT "Parent's Day," complete with breakfast in bed, presents, and service, all of which they planned all by themselves... 

 

We had a great visit from Grammy and Gramps, and they treated us to dinner and the "Texas" show in Palo Duro Canyon...

 

We ate yummy cobbler to celebrate Gramps's birthday...

 

We went to Dallas for a fetal MRI and hung out with my sister's family.  Here we were visiting the Museum of Art...

 

We took the kids to some fun sights in San Antonio...

 

 

And we got back home just in time to get ready for school.  While our day-to-day activities this summer were a little slower than usual, we still spent a lot of time at the pool, with family, and on vacations.  What a blessing my family is to me!  I am truly blessed to have them in my life!

Bad Days

             Since I started this blog, I have received so many wonderful and supportive comments from people who have read our story.  People have even commented on how inspiring our faith is and how impressed they are with the good attitude Brock and I have had through this whole thing.  I am so grateful that for the most part, those feelings have been our true, honest, “real” feelings. 

WARNING!  Today is not a day when my true, honest, “real” feelings are noble, inspiring, or uplifting.  Today is a day when my “real” feelings are ugly, selfish, overwhelmed, and scared and I am full of fears, frustration, and anger about this whole thing.  If you want to be inspired today, you may want to go read someone else’s blog, because today I just need to vent.  I’ve felt this way for the last few days and struggled with whether or not I should expose myself in this format.  I have had the prompting so strongly though to write these feelings down, so at first I was just going to write this for my own private journal and my own private benefit.  But then the thought came to me that maybe years down the road, someone else will be on the same path I’m on and will need to know that there are hard days and really raw, awful feelings and it’s okay to feel that way.  Right now, I don’t know if it’s okay for ME to feel that way, so maybe someday the fact that I’m putting this out there will help someone else.  You’ve all had your warning, so if you’re prepared for a little childishness, read on!

I know that someday, I will look back on this and wonder what I was so worried about.  I know that those who have had experience raising or working with special needs children will say that it is the most wonderful experience and they wouldn’t trade it for the world.  I know that someday, when I’ve been through this a little I will feel the same way.  But right now, I honestly don’t want ANYTHING to do with this!  I am terrified of what this whole situation is going to mean for me, my family, and my whole way of life.  I know that when you lose yourself in the service of someone else, you really find yourself.  I have experienced that in many situations.  But right now, I have no desire to lose myself in this! 

I really like the way my life is and the way our family runs.  My kids are great, mature, self-sufficient (for their age) children and I have high expectations of them.  I absolutely adore my kids and love spending time with them, but a lot of the reason I like being with them is because they are well-behaved.   I’m not one of those people who just LOVE kids.  I love MY kids, and a big part of why I love them is because they are easy-going, low-maintenance children.  They are very easy to love and I am very comfortable raising them.  I know things will definitely change as they get older, but for right now, parenting is actually pretty easy.  I enjoy it and it comes pretty naturally to me.  I chose to be a stay-at-home mom, not because I didn’t want to work or because we could afford to do it.  I chose to be a stay-at-home mom because I felt like it was the best way to raise my kids and give them the environment they needed to grow.  However, I have been very careful to not lose my identity in the process.  I take my favorite exercise class at the gym, lock myself in the bathroom to read in the tub for an hour, and schedule days off where I can just go by myself for some alone time.  I make time to do things that are important to me, and Brock is WONDERFUL at making sure that happens. 

And speaking of Brock, I REALLY love him and I REALLY love spending time with him.  I really, REALLY love spending time ALONE with him.  We make it a priority to go on regular dates together and feel like our strong relationship is the most important gift we can give our kids.  About once a year, we plan a vacation without kids – either overnight somewhere or as long as a week away.  Ever since we got married, we have also made sure to go to the temple once a month, whether that meant traveling 2 ½ hours each way to Winter Quarters when we lived in Iowa, or traveling 1 ½ hours away now to Lubbock.  We’ve taken our kids with us on those drives and they have just grown into learning how to handle the long drives and the long wait while Brock and I swap temple sessions.  We have done all these things because they are important to us and because we have a life that fosters those things. 

I can’t help but fear that these things won’t happen in the same way once Flint arrives.  If he has special needs, will I have the luxury of being able to arrange my schedule the way I want so I can take my favorite workout class at the gym, or will my life be dominated by doctor appointments?  Even if I can go to the gym, will I be able to leave him in the nursery there with the babysitter for an hour, or will his needs be so big that this is just not an option.  Will I get a full night’s sleep like I do now, or will I be up all night for the rest of my life, rolling him over every couple of hours because he can’t do it himself and he might get a bed sore?  I have no idea how to parent this kind of child or how to help him achieve his best.  I don’t even know what his best will be!  How will I know what to expect of him or push him to do, when it could be something that he literally CAN’T do because of his issues?  How will I know the difference?  I just honestly don’t know a thing about raising a high-maintenance child and the realities of what that could mean scare me.

Will I be able to have those special one-on-one times with my husband, with weekly date nights and occasional weekends away?  What kind of baby-sitter would I have to find, to be able to leave a child with big needs in their care for even an hour?  I won’t even talk about a whole week away, because who would even know how to take care of him for that amount of time?  And even if I could find someone, will we be able to afford it because of all the money going to pay medical bills and insurance?  Will we be able to still travel to the temple each month, where we are able to worship in more personal ways and feel closer to Heavenly Father, or will that drive just not work when we’re toting along a child with severe handicaps?

I haven’t imagined up any of these concerns.  They are all real-life situations I have seen in people who are “blessed” with a special needs child.  I feel so selfish for being so concerned about these issues, but sometimes, these are the things that scare me to death if Flint survives!  When you have a new baby, you know your life is going to be turned upside down – for a couple of months.  Regular life kind of slows down while you get through the more difficult early months of the baby’s life and then life returns to normal and all is well.  I feel like my reality is that if Flint survives, my life will be turned upside down – for the rest of my life.  I guess that I am really just afraid of losing ME. 

One of the things that most frustrates me about this though, is that my sweet, young children have to deal with this right along with me and Brock.  They are brave, kind, and happy, but sometimes the emotions and worries catch up with them too.  Last night I was showing my dad the pictures we had been given at the hospital of babies with shunts.  We had all imagined that the shunt would be inside Flint’s skull where it really wouldn’t be noticed.  However, the shunt is placed between the skull and their skin, so there’s a long, bulgy line running from the top of the person’s head all the way down to the base of their skull.  In all honestly, it’s quite obvious and looks a little weird.  You can guarantee that if it looks weird to an adult, it’s going to look REALLY weird and scary to a kid.  Even though Duke has already seen these pictures, it just got to him last night.  He came up to me and said “Mom, I want to talk to you.”  When I asked him if he was okay and what he wanted to talk about, he kind of whispered and said “I want to talk to you about Flint.”  We went upstairs and laid on the bed together, where Duke cried and told me he was afraid his friends would make fun of Flint because he’s not “normal.”  He’s afraid Flint won’t have any friends because he looks different and might act different.  He said “Flint has a really cool name and I want him to be just like the rest of us.”  Davis has expressed similar worries, that she might be embarrassed by Flint if he is different.  It doesn’t bother me at all that my kids feel these things because I think it’s a very normal part of the adjustment process for them.  What bothers me is that they have to be in this situation where these feelings are so normal.  Both times my kids have expressed these feelings to me, we’ve talked about their good hearts and the love they have for everyone already.  I have told them that I know Heavenly Father loves Flint very much.  He knows that by sending him to our family, Flint will be very blessed with an older sister and big brothers who will adore and protect him.  I told Duke that Flint is very lucky to come to a family with such wonderful siblings and all Duke could say was “How can Flint be lucky when he’s going to be born this way?”  It’s all about the eternal perspective, but sometimes, it’s really hard to have that!

Anyway, as I said at the beginning, most of the time my real feelings are ones of faith, hope, and trust and I am grateful that I have usually been able to see things in a positive manner.  The last few days have not been that way for me, and even though I probably appear horribly selfish and childish, the reality is that this is where I am right now, today.  I know it will pass, but right now is a scary and sad time for our whole family.  We’re just plodding through…waiting and hoping for a good outcome.  But at this point, it just doesn’t seem like that is going to be the case for us! 

A Neurosurgeon and Some HOPE!

           Who needs to ride an actual roller-coaster when you can get all the up-and-down thrills you ever need when having a baby with special needs? Wednesday was definitely a down day but today, after a visit to the neurologist, we are back on top again. True to this pregnancy, we are constantly kept on our toes and the story is constantly evolving and changing.
           When we arrived at Children’s Hospital, we were met by a Fetal Care Coordinator who told us he would be our escort throughout our appointments. He attended our meeting with the pediatric neurosurgeon, took notes for us, gave us a tour of the NICU, and showed us around the hospital. This place knows how to make an uncomfortable place and situation seem almost bearable!
          The neurosurgeon’s name is Dr. Weprin, and when we met with him he had already looked at our pictures from the MRI. He sat with us and began to explain what everything meant. Apparently, a radiologist looking at pictures of the brain sees things very differently than a doctor who operates on brains and deals with brain issues every day!  It was wonderful to have a brain doctor decipher what Flint's problems could translate to in real life. The most interesting thing he shared is that there is a chance that Flint could have absolutely NO problems as a result of the parts of his brain that are missing. Apparently, you can walk around without parts of your brain, and it’s no big deal. MIND=BLOWN (maybe literally?)!  I think this probably explains a lot about certain people I’ve known throughout my life, but still, it is crazy to think that this could even be possible! At the same time though, he also told us that when there are defects in the brain, there are often other things wrong that you just don’t know about until you can see the baby in person instead of through an MRI. So again, we really won’t know how this problem will manifest itself until Flint is here and maybe even months or years down the road. But he assured us that as far as brain issues go, this is not that big of a deal and there is a lot of room for hope. It is still possible that we could have a really bad outcome, but generally Dr. Weprin felt like that is not the norm for these particular birth defects. Really though, only time will tell!
           Dr. Weprin did say that Flint would definitely need a shunt put in his brain to drain out all the extra fluid, but it wouldn’t have to be done immediately following his birth. We should still be able to deliver in Amarillo, then when he and I are both well enough to travel they’ll ship us down to Dallas. They’ll do the surgery there, wait a few days while Flint recovers, and then ship us back. When I expressed my fear of doing this because of insurance not covering the life-flight, both the Fetal Care Coordinator and the Dr. said it’s just not the case. They both said insurance will tell you it’s not covered and out of network, but since Dallas is the only place they can do it and it’s a necessary procedure it all gets taken care of in the end. SUPPOSEDLY, they make deals all the time with insurance companies and it’s never an issue. I’m not totally taking their word for it, but I feel that between my insurance company saying they’ll never cover it and the doctor telling me they do it all the time is a happy medium. Either way, I don’t look forward to trying to discern insurance issues with all this!
           All in all, we left this appointment feeling much more hopeful about Flint’s prospects for life. We know it can still be bad, but it’s nice to know that there is a lot of variance. The funny thing about all of this though, is that today was much harder on me than Wednesday was. Walking into the waiting room at the Children’s Hospital was very overwhelming to me. There was something about seeing all the painted children’s mosaics all over the place and looking around seeing children with obvious issues that made it all just too real. I had to keep myself from bawling all over that hospital when he showed us around the NICU and explained what they do to put a shunt in. It was all I could do to not break down right there in the middle of the hospital hallway!
           This probably sounds shocking, but there is a part of me that feels like losing Flint to death would be so much easier than raising him with mental or physical disabilities. I know there are many reading this who have lost children and think I am CRAZY and that I have no idea what I am talking about. There are also others who are raising children with disabilities who think I am CRAZY and that I have no idea what I am talking about. And if you’re thinking that, you would be right about me not knowing what I’m talking about! I haven’t lost a child to death and I am TOTALLY not trying to minimize what a horrible, horrible experience that must be. I only know that for me at this point, I do not know Flint like I know my other children. I don’t have memories with him and I haven’t bonded with him yet like I will once he is here. I am not afraid of death and it is something I feel like I can grasp and imagine. Death is also comforting to me, from the standpoint that I firmly believe in an afterlife with Heavenly Father, Jesus Christ, and loved ones all around. However, raising a child with disabilities is so foreign to me that I can’t even sort of imagine what it will be like. I have absolutely no knowledge of the ins and outs of raising a special needs child, nor can I picture all the ways my life could change. It just feels like the scarier option to me right now, so being in a place that very well could be my new reality was extremely emotional for me. It’s just all part of the adjustment and preparation that needs to happen as we wait to discover what our new reality is.
           Overall, it’s been a good day if not a little emotional. It’s always good to have hope and get a new perspective on things. Only time will tell what we are really going to deal with, but I’m learning to be patient and put it all in the Lord’s hands. What else can I do? I like to organize, plan, and be in control and obviously Heavenly Father wants to show me a better way. I’m trying hard to be content with letting Him organize, plan, and control this aspect of my life. Maybe if I learn that lesson here, I’ll learn to do it in other areas of my life too! That can’t be such a bad thing, can it?
           I am SO grateful we were able to come here to Dallas and meet with all these specialists! At this point any information we get, whether it’s good or bad, is a welcome sigh of relief. This visit has definitely been an answer to our prayers and brought peace and a little more stability to our very precarious situation. It’s also been great to be with family. We’ve enjoyed spending time with my sister’s family and helping her with her sweet new baby boy Griffin. We’ll be here a few more days and then we’ll head down to San Antonio to enjoy one last visit there before school starts. In spite of the challenges of the last couple of months, I really can’t help but feel so incredibly blessed. Life really is good, even when it’s hard! There are ALWAYS so many more things going right than things going wrong and it is such a tender mercy to be able to recognize that!

MRI Results

                It’s been a long day and I am TIRED, but I felt the need to update this tonight.  I know there are many wonderful people living this ordeal with us and you all have been wondering how things went today.  Thank you all again for your love, support, and prayers in our behalf right now.  We will definitely need them more in the future!

                We finally have some concrete answers about our son and if you want to know what they are, you may want to be prepared to google them.  We’re dealing with some pretty crazy terminology!  We’re still figuring out all the specifics, but here are the general findings.  Unfortunately, there are definitely some malformations in his brain.  The first issue they found is called a Dandy-Walker Syndrome.  There is a whole continuum for this defect, but Flint’s is on the severe side. Basically, we are supposed to have a vermis connecting the cerebellum to the rest of the brain.  His vermis is not there, meaning there is a large gap between the 2 hemispheres of his brain.  He is also missing his Cavum Septum Pellucidum and therefore PROBABLY has Septo-Optic Dysplasia Spectrum (see – I told you they’re crazy terms).  The Cavum Septum Pellucidum connects the right side of the brain to the left side of the brain.  With both these connections missing, there is a lot of “communicating” that his brain just won’t be able to do.  As an example, the doctor talked about how when we walk, we just do it.  His brain would have to communicate every aspect of walking, and therefore, walking may not even be possible.  There are MANY ways this problem could manifest itself and how it affects Flint will still not be answered until he is here.  He could have problems with a multitude of physical and mental issues, even those such as breathing.  For this reason, there is a fairly high death rate amongst babies with these issues.  The radiologist told us that one of these issues by itself is bad, but then you combine it with the other issues, including his growth restriction, and it can be quite serious.  Again though, we won’t know what exactly it means for Flint until he is here.  What we DO know is that it is not good and there is nothing they can do about it.  Because of this, there is a very good chance that we will be able to deliver in Amarillo.  This will be a huge relief because we will be able to be together as a family, instead of me in Dallas with Flint and Brock and the kids back home.  We will meet with a neurosurgeon here in the next couple of days to confirm that there are no procedures that will need to be done on Flint once he is born.  As long as that is the case, we will plan on delivery in Amarillo.  We will then watch and see what he does and frankly, how long he lasts.

                While this is obviously not good news, we also were not shocked to hear any of this.  We’ve felt for a long time that it was going to go this direction, and I feel that Heavenly Father has been preparing us for this news for a couple of months.  We have good cries about it all the time, and I’m sure we will shed many more tears before this is all over.  There will be scary and anxious days ahead as we wait to meet him and see what his future will hold.  But we also feel at peace and know that whatever happens, Flint has a special mission to accomplish here and we are all growing from that mission, even when it really, REALLY hurts. 

                At this point, Brock and I would like to make a request of all of you reading this blog and following our story.  While there is a possibility that Flint can live, and even live a long time, we would like to ask you to please pray for his time on earth to be very short.  If he lives, his life will be severely limited, and as much as it hurts to think of losing him, it hurts more to think of him dealing with his limitations for a long period of time.  It will be hard to lose him at any point, but the longer he is here and the more we get to know him, the harder it will be to say goodbye.  I know that this body is the body Flint is supposed to have and I do not expect a miraculous healing.  The miracle I want now is for him to be born, give us a brief time with him as a family, and then for him to return home to our Father in Heaven.  I know he is mine and will be a member of my family for eternity.  He is the son of Brock and me and the brother of Davis, Duke, Gage, and Trayson regardless of how long he stays on earth.  It will be the hardest thing in the world to go through, but I am at peace with asking for this blessing.  I’m sure there are people who will disagree with this request, and if you just can’t bring yourself to pray for this, please at least continue to pray that we will be blessed with strength beyond our own capabilities.  We will need to be tough as flint to get through these next few months!

                Thank you again for all your love and support!  It means the world to us that we do not have to suffer alone.