9 years

My dear husband,

I remember when calling you "my husband" felt strange. I wanted to giggle like a little girl each time I said it...partially because it made me feel so old to be saying it, but mainly because I loved being able to refer to you as having such a unique title. Now, it is such an "old hat". We've been married so long that it is second nature to call you by such a title.

My husband. You know me...I'm more sentimental than good when it comes to days like these. During the days approaching our anniversary, I enjoy thinking back to the day that we took a vow before God to love one another all the days of our life. I remember your face...it was all I could see walking down that aisle. I see your smile in my head like it was just yesterday. I could see the love written all over your handsome face, and I tried to portray to you through my eyes how much I was truly thankful for you and how much I loved you as well. It was a fairy-tale day, in my book. And I have had many more fairy-tale days with you since then.My husband. I can honestly say that if I had a crystal ball 9 years ago that would tell me all of the trials that we have recently faced, I would still marry you. You are the one that God has placed in my life to have and to hold. Through sick and through health. Through good times and through bad. You are always there to hold me in your arms. To comfort me when I am sad. You are there.

My husband. Despite the rough times we have to endure together some days, happiness and laughter always seem to follow. God has blessed us both with a happy countenance after the sorrow, and I am so thankful for that. I am thankful that you are happy and loving and joyful. I love to laugh with you. I love to poke fun with each other. Thank you for not getting "bogged down" in the hardships of life, but rather thinking on the good that God has blessed us with through our days. If you weren't such a strong influence in our marriage, I don't know how I would make it some days. Thank you, sweetheart.
My husband. Thank you for being the most amazing father to our children. The fact that all three of them stop what they are doing and run to the door the minute I announce that you are home speaks volumes about the type of father you are to them. You love them and care for them and spend one on one time with each of them...they see that, and I see that. Thank you.

I love you, my darling. I thank God that He has blessed me with such a wonderful best friend to go through life's journey with...you are everything I dreamed of in a husband from the time I was a little girl. In my eyes, you are one of God's greatest gifts to me, and I still feel so unworthy for such a wonderful gift. I love you, my darling. Happy 9th Anniversary.

Back in the swing...

I sat down with a bowl of soup for lunch yesterday to scarf down before Nate's OT appt, and my soup-loving gal (Emma) came bee-bopping over to take part in the soupy goodness...just like usual. She scooted her little toosh beside mine and stole my spoon, so I got up to retrieve another "poon" as my little non-"s" saying gal pronounces it. Emma took her first bite of the soup just as I was about to dig in, and she immediately spit the enitre mouthful right back into the bowl.

Me: (rather frantically because spit and backwash give me the willies) WHAT IN THE WORLD ARE YOU DOING?
Emma: Dat bite had a damatoe (tomato) in it.This was about the time that I realized: "Yep, I'm definitely home." And the soup...well, that went right down the garbage disposal. Wasteful? Yeppers...but it had Emma spit in it and I love the kiddo and all, but there was no way that soup was going to make it down my throat without a good amount of gagging along the way. However, the leftover meatloaf in the fridge was great...and was NOT shared with anyone.

(Emma's belly with a mitoaction.org temp-tattoo...she's very non-conventional with where she decides to place her tats.)

The trip to DC was wonderful. Even though I missed the fam like crazy, it was quite nice to be away and experience quite a bit of continuous thought without being interrupted with spilled drinks or requests for snacks and games of "Don't break the ice". The UMDF symposium was...well, I can't quite explain how wonderful it was being able to attend this meeting except to say that I am so very very thankful to have be able to take this opportunity to be surrounded by so much knowledge about this disease we are facing each day. I was able to put a face and personality with the main doctors across the country (and they are very few in number) that research and treat patients with mito. I was able to sit in on a talk about the genetics of this disease and finally understand the many ways this can be passed down in families. (Mito is the only disease they know of that can be passed down multiple ways and have such varying degrees of involvement within families.) Meeting with the doc who runs the mito clinic in Houston was simply wonderful, and it opened up the next tier to Nathan's care and a few questions on some treatment options we have in the near future.Right before I left for DC, Nathan had been having some breathing issues that caused his Pulmonologist to order some labwork on the little dude. When the labs came back, it showed a pretty low CO2 level that signaled that Nate was in metabolic acidosis...most likely lactic acidosis, as this is fairly common in mito patients and the little guy has had problems with this in the past. At the symposium, I was given answers to why this happens and what we should do about it and if this causes long term problems. The great news (and I am excited because none of Nate's docs really knew the answers to these issues) is that we can usually combat lactic acidosis at home with pumping Nate full of gatorade and won't have to admit him unless he won't take the fluids at home. And the high levels should not cause problems as long as he is self-compensating (hyperventilating (breathing fast) in order to bring his CO2 level down quite a bit to help stabilize the ph in his blood), and we currently know that he is doing just that. See...I told ya I learned a LOT!But the best thing I brought back from DC was the budding friendships of many other families going through this journey right along with us. I really enjoyed talking with parents from Canada, Michigan, Atlanta, Texas and so forth. I also enjoyed meeting a great couple from Ocala and a mom from Orlando (both here in FL), and we have high hopes and plans for some awareness and fundraising in our state that doesn't know much at all about this disease. I also spent a good amount of the weekend with our mito researcher's nurse, as we have become pretty good friends lately. She was such a huge help along the way, and we truly enjoyed getting to know each other and each other's families (from stories) better. I can not express accurately how thankful I was for the weekend in DC and for the information and friendships gathered from this trip.On the home front, the kids loved hanging out with Grammie and Papa (Jay's parents). Nathan (the man of very few words) started calling Grammie "Gah-Gah" and didn't stop the whole weekend. If he wanted something, he yelled for "Gah-Gah" until she came to his beckon and gave him what he was desiring. If she didn't come right away, he just got louder and louder. I find that quite humorous and am now not too upset that he isn't saying "Mama" or "Dada" yet. The girls were heartbroken when they had to say good-byes to the grandparents...in the words of the tenderhearted one (Abby): "Mama, I just put my head down and cried and cried." Growing up, we always lived away from our grandparents, so I know the feeling all to well. It stinks having to say goodbye and knowing you won't be able to see them for a good while longer.
We are finally back to a normal routine around here. Nate had OT yesterday, and they are ordering him a new disk type thingy for him to sit on from time to time to help strengthen some of his respiratory and trunk muscles that we have been working on for eons with little results. We're being creative now, and this disk sounds pretty interesting. I love Nate's OT...God has really blessed us with wonderful therapists for him.So that's the recap. I am still horribly behind on emails and such, but I have really been enjoying playing with the kids with a refreshed zeal from being away for a few days. In the 4 days I was gone, I think they all grew a foot taller and became a teeny bit more ornery. It's great to be back home.

A reflection of the day

I sat in a white rocking chair in terminal E at Charlotte, rocking back and forth and back and forth as I pondered on the information and events from the weekend. The layover between flights was very long, and I couldn't wait to shower kisses upon Jay and the kids when I returned home, but I was enjoying this last long bit of silence for thinking...and prayer. I sat and rocked for 2 hours and talked to God throughout this time. "It's all so overwhelming...I need guidance. Please God, show me what to do."

The one thing for certain that I pulled away from the mito symposium was that we need a doctor specializing in mitochondrial disease organizing Nathan's care. I met with the mito doc from Houston (the closest clinic to us) on Friday morning for a few minutes, and it was the first time in Nathan's 16 months of life that someone actually had an answer to the whys and hows of the complexity of his medical issues. She understands this disease...and I wanted to hug her and thank her and carry her home with me to meet the fam and all our friends. Seeing a mito specialist is something that we have been putting off until he is more affected, but this meeting made me realize that he needs to see one sooner rather than later.

As a parent, I want to do everything in my power to research and learn and understand this disease in order to help my son thrive in this difficult journey. I want him to see the best doctors and get the best treatment. I know that every other parent with a child with a chronic illness will say the same thing. And even though we think that nothing will hold us back from storming the medical community to get only the best, some things do indefinitely get in the way. Money is one of them.

Now, I hate to talk about money. I hate it. But I must in this instance, in order to explain my reason for telling you this. Yes, having a child with a chronic illness/disease is expensive. Very expensive. Thankfully, God has provided in many amazing ways for our family throughout this time, and we also try to be frugal and attentive to what we can afford and what not. The symposium that I just attended was a rather expensive trip...it was well worth the information acquired, and I hope to attend more symposiums in the future if able...but yes, it was a bit expensive. I only tell you that to lead into my dilemma for the day...

In my quiet time staring out over the tarmac outside of Concourse E today, I kept conversing with God: "I feel like we now need to see a mito doctor, but I am afraid to spend more money on plane tickets and such when I just took this pretty expensive trip. Please direct my ways. Show me what we need to do and when to do it."

"But verily God hath heard me; he hath attended to the voice of my prayer." Psalm 66:19

Waiting at the departure gate, there was a voice over the loud speaker: "If there are any volunteers willing to take a later flight available, a voucher will be awarded." On an important personal note...I don't like change! My husband will tell you first-hand that I am very resistant to any type, shape or form of change around me...a flaw, so to say. I have a really hard time with change. Due to that, I am NOT a risk taker. The lottery, the slot machines, the stock market...I would be happy if they were all banished, as I see no pleasure in them whatsoever because of the risk. And saying this, I want to express that I was really missing my husband and kiddos at this time...to the point where I swore off even thinking about them lest I erupt in tears. Summary: not a risk taker + missing family = not a good candidate for a risky move to give her seat away for a flight home.

BUT...after the attendant made the announcement, I had a sinking feeling that I needed to try for that voucher she was mentioning. This freaked me out because I DON'T TAKE RISKS!!! I don't normally go outside of the realm I know. But something kept gnawing at me to go ahead and try it...just become a volunteer.

I made the walk...all the way up to the podium. My first question: "Does US Airways fly into Houston and Cleveland?" (These are the cities that house the 2 mito clinics we have been discussing previously about attending.) The answer was a deciding "YES!" I gave away my boarding pass still somewhat reluctantly with the afformation of "You'll probably still be on this flight, but thanks for volunteering." Turns out, another passenger volunteered before me, and they only needed one volunteer.

Fast forward to boarding time...after the boarding was complete, they decided to board the other volunteer and left me sitting at the gate. I was nervous. Had I made the right decision? Was my heart leading me the right way? My very nervous stomach caused me to visit the bathroom in the interim, but when I got back the lady called my name and informed me that I was booked for a flight home that was just an hour later and also given a $250 voucher for any flight within the next year. Essentially, a free (or almost free) flight to any destination.

God is so good. I had been asking earlier in the day if it was wise the spend more money on a plane flight so soon, and He provided that additional flight for me. After receiving the voucher, I gathered up my belongings and found the nearest bathroom stall to cry and thank God for his mercies. He answers prayers...it has been very evident to us over our lifetime, but it is still so sweet to witness each time.

We do now know that we will be taking Nathan to see a mitochondrial specialist in the next few months, but the question of "who" is still not clear. Our hearts are pointing towards the ones in Houston and Cleveland, and we just don't know who will be best for Nathan. This is our prayer now...that God will show us directly what is His will for the next step.

Heading out...

Apologies for the lack of updates this week, but I have really been enjoying Jay's parents being here. The kids are quite excited that they get some good personal time with Grammie and Papa over the next couple of days, and I am just hoping that they are less energetic and behave themselves. So, please keep my in-laws in your thoughts and prayers as they undertake the huge task of watching the 3 hooligans over the next few days. I have a few really cute pictures to share when I get back.

Heading out bright and early tomorrow morning to make the trek by aero-plane to our Nation's capital. I'm excited and nervous all at the same time.

An important announcement...

It is with utter excitement that I am able to share what new adventure Lillipops Designs is undergoing. In an effort to bring more awareness to Mitochondrial Disease, Jayme at Lillipops has created a line of shorts, capris, and pants that features "Mike the Mito Turtle".Not only is this such an incredible way to raise awareness about a disease that is relatively unknown to most, but it also benefits a cause that is equally near to my heart. A few months ago, a fellow mito mom started helping create a mascot for the mitochondrial clinic in Houston. All children who suffer with mito have to undergo routine labwork, invasive and painful tests, and regular doctors appointments. Having a little stuffed animal as a mascot will help add a positive touch to such a difficult journey for these little tykes. Mito Mike is this mascot...a stuffed turtle with the saying "slow and steady wins the race" that is the perfect motto for a disease that robs the body of energy.
For every pair of Mito Mike shorts or pants that are purchased through Lillipops Designs, $10 will be donated to the Mito Mike charity. I just get chillbumps when I think about all of this and tears come to my eyes. I can't stop smiling from ear to ear. And I simply can't thank Jayme at Lillipops enough to trying to help bring awareness to this disease that affects us personally. Thank you, Jayme. This means so much.
On a side note, there are many different patterns and colors of the pants, shorts and capris (even colors for girls), but the turtle applique will remain the same. And when your children are wearing these adorable outfits and someone talks about how cute they are, please remember to share with them that this is for a wonderful cause. The more others know about mitochondrial disease, the more funding will hopefully be put into trying to find treatments and possibly a cure for such a difficult and heartbreaking journey for so many. So please share...

More pics from Marco

The little guy in the family was an absolute bear yesterday, to which I seriously contemplated packing up and heading back south to Marco by myself. The kids know how to make cereal, and there are enough apples to last for a few days, so I'm pretty confident they can make it on their own. Nate's physcial therapist came by and taped the fella up pretty good to help with some of his breathing difficulties, and I was hoping that she would take me up on my offer for her to just take him back to her house for the weekend. But after we pulled 2 crayons, paper, and a band-aid out of his mouth and saw him pitch quite a few fits along the way, she politely laughed a "not on your life" laugh at my proposition.Back to thoughts of Marco...On the last night, Jay had taken Nathan back to the room for a cool bath because he had gotten overheated, and the girls and I stayed on the shore to watch the sunset. Right before we walked back up to the room, I told the girls to breathe in one last deep breath of salty air and listen really well to the waves because it was going to be a while before we were back. I thought it was a sweet little sentimental thing...until I looked over and Abby was sobbing about having to leave. Tears = Good memorable vacation.The girls enjoyed building sand castles along the shoreline...Nathan enjoyed destroying their sand castles as soon as a tower would go up. So Jay, who hates the beach (its hot and sandy, and he no like neither of those , so combining the two is almost torture to him) and jumps at any chance to head back up to the pool or the room, took Nate up for a nap one day while the girls and I were bound and determined to build a sandcastle. Their favorite part was farming the multi-colored coquinas from the sand and using them as decoration for the castle, which made me smile because that was always my favorite thing to do as a kid on the beach.But much to my chagrin, if you gave the girls the option of being on the beach or at the pool, they would always choose the pool. The water slide was too much fun for Abby to pass up, and Emma loved to kick her way around the pool in the comfort of her floaty ring. By the end of the trip we were referring to her as Wade from Garfield and Friends, which only means that we watch entirely too much kids TV. Emma went down the slide about a dozen times the first day...until she smacked her head pretty good one time and vowed to never go down again. I thought I had convinced her to go down again at one point (I told her I'd give her a big fat dollar when we got back to the room if she went down again...you know, to face her fears and all). She waited in line and got all the way to the top of the slide, sat down on the slide, and then got up and told the slide police that she didn't want to go anymore. The stinker bee-bopped her way back down to the pool like nothing happened and started puttering around in the water with her beloved floaty ring like usual.We got back from vacation, and I instantly ordered some at-home training videos to get my bodunkadunk back in shape. There's nothing like being in a bathing suit for a few days straight to make you want to loose the flabby mcflab that you have become quite close to over the past few months. Our beach diet consisted of chips and candy bars and powdered donuts and PB&J and fruit snacks...you know, just the staples. I did eat raw oysters for the first time at dinner one night, and they were yummy. And then the were the eggs benedict that I tried for the first time at breakfast one morning, and they were double yummy. And just thinking about these makes my mouth water and my jelly belly want to immediately start doing sit-ups. I love vacation food.All in all, it was such a fun week. The kids slept very well in the hotel, and we only had to resort to the Benadryl cocktail once. On the last night, Jay and I sat on the balcony and watched a huge thunderstorm make its way to the island. With almost incessant lighting jumping from cloud top to cloud top and shooting out from all directions, it was the most amazing display of dancing light we have ever seen...truly a wonderful end to a wonderful week.

My feet are still pruny

We entered back into our neighborhood by early afternoon today, still heavy hearted as we left our beloved Marco Island behind. But even though we were sad to leave our favorite little beach town, it was indeed time to go. Nathan woke up with a metabolic fever this morning and an attitude that gave the crabs a run for their money, and when he fell for the humpteenth time and woke everyone up on the 10th floor with his screeches, we knew that we needed to head back north toward home. With a day of rest in the van and at home, the little dude was doing a lot better by bedtime, and his temp was finally starting to trend downward.

This was our 4th year being able to be go to Marco Island, and as I was editing this year's photos tonight, I realized that there was somewhat of a theme among the photos from these memorable trips each summer (click on the pics to see them bigger):It was a wonderful week, and as soon as we finish unpacking half of the sand from that portion of the beach from our suitcases, we will indeed be ready to tackle the everyday tasks of our lives. First though...I am going to bed to sleep on my pillow and pray that the kids sleep all night tonight. I'm pooped! More pics tomorrow...