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 Here we go!

I shut the door on our 1st moving pod today! 

I trust… I trust that I will be ok, my family will be alright and we will land in a better place. No I am not talking about a big fancy house, a boat or a little piece of land we can call our own. Those are the tangible things we are looking at with this move but I am desperate to reconnect deeply with God and live my life once again close to him. I am aware that location will not find that for me. It seems individually we are all struggling and I look to open a new chapter. Fresh page, clean ready to begin, allowing us to each to write the next part of the journey and hopeful to use the parts of the past to bind us and strengthen the path we pave as we go! 

Our journey in Colorado started over 20years ago as a young couple looking to spread wings and build a life together! We did just that. We called a little apartment home for a few months until we bought our home. The same home we will be leaving for good in August 2021! 

This house we made our home for all these years. The outside has changed colors a few times and the inside went from empty rooms to having little space to move without bumping into something. We stuffed every inch of this house with kids and stuff! This house has seen newlywed struggles to the joy of bringing home each of our babies and the open house to relatives during the times of grief. It has seen its share of heartbreak and sadness yet it has been our shelter through it all! It has protected us in the storms of life as well as the natural storms outside. I pray that our next home will be able to stand the test of time as this little Krameria street home has. I have always been thankful! 

My heart. When the love of my life moved to Colorado I was uncertain of my future until he proposed and asked me to join him. I hated Colorado at 1st I cried because I missed the trees of the Midwest. I grew to love it for its unique beauty. Our entire married lives have been here in This house. The highest of high moments to the lowest of lows. There were so many of both! Those that know us know we didn’t get the easy button. We had to cry,work, fight and scream to make it this far. I have hope for our family and hope we can all become closer to God! I feel like the last few years have torn our unit a bit and distanced us from our Lord. 

Family has roots. When we moved here we did so just the two of us. Selfishly we built our own lives, community and world! I have always struggled being so far from my family and my roots. Not many of them still live in the same city yet they get together as no time has passed. A boat ride, a camping trip a wedding or a funeral. I long to share it all with my kids before they are too old to remember or want to spend time with family. I want them to understand that beneath it all is Love. We are all so different but we can come together in Love. The kind of love that forgives when you wreck their car or haven’t called in a while. The love that bonds you for life with forgiveness not hold onto resentment. We all make choices for our lives but each choice we make affects those that love us. We need to move forward in life understanding the past can be destructive or beautiful it is up to us to force it to build us not tear us down. I look to a new chapter not for a fairytale but to equip my children for their future by linking them to our roots.

Community is God given. I am an extrovert. I have always tried to live out loud though the last few years have me desiring to find that part of me again but I will. Each time I find a new Job, church,  craft or well anywhere they become part of my life to stay. I am the kind of person that loves people and the beauty they show me. I enjoy learning about them and their joys and sorrows what makes them who they are. I never take for granted what a gift a community is. As we faced the depths of diagnoses with our children the lengths our community took to help us though were beyond what anyone can imagine. Selfless, generous, thoughtful, embracing and Loving I couldn’t imagine my journey without the people along the way. I only hope I can be part of that for someone else in life. If you ever wanted proof or a living form of God you dont need to look far! I have felt it and will always be thankful for those of you that have stood on my path rejoiced in the triumphs and shed the depths of sadness when it was crippling. You held me so that I could get up when I was ready that is a gift from God! Each of you handpicked! As I leave the local community I hope to stay connected to many of you as you have meant so so much to me. 

Work is difficult. I am a hard worker and always put myself into whatever I am doing.  From the beginning and through it all weather it was working the grill at McDonald’s, selling clothes at the mall, answering phones or working at the school I try to find the joy in it. Some I was good at and something not so good. My 1st paid gig since the years of being home with my kids has been such a joy! I love working at the school and never imagined the fulfillment I would get through my Job! Yes there have been difficult days but as a whole it has built me a new love for who I am. Healing where I didn’t know I needed. My job has been a gift showing me a little something new each day! I haven’t yet finalized my departure until the paperwork on our house has been completed. I am leaving a little piece of myself there. 

My boys are buried here but will always be with me. 2005 on a cold December day we said goodbye to Elijah my 2 1/2 year old son. He had been diagnosed with Leigh’s syndrome at 5months old. I allowed myself to be emerged in his care and that was what I did for his life! Oh the beauty his life was though from the outside it looked different I am sure people found it difficult to relate. As we moved through life I imagined that loss would be the most difficult valley I would ever be in. I was seriously wrong. 2013 brought so much hope but with the diagnosis of cancer in my then 5year old I once again found myself in a place others could not imagine. However a little spout of joy was emerging as I was pregnant. Some of that time is blurry as so much was going on but I can tell you I was joyful to have another child. The day I knew something was wrong put a hole in my heart. He had passed at 34weeks in my womb. Born September 11 Isaiah will always be my part of me even though he never opened his eyes. We buried him a week later near his older brother. It will still be difficult to leave them even though I know they are not truly there.

Packing was interesting. So many things from the past and the present. Some junk, some space filler and some memories that will always be carried! As  we unloaded the crawl space it brought tremendous amount of JOY. Funny to see all the crap we collected all these years and fun to watch my daughter read with interest yearbooks, newspaper clips, awards and anything else she could find in our childhood boxes. She laughed at getting to know her parents better. Then came the biggest fun. My husband has been telling my kids about his teenage love of his stereo specifically his speakers. So we dug them out of the crawl space found an old receiver and boom we were in business! Enough sound to be heard half way up the block. We could only find 2 CDs since I had packed the rest! That was all we needed to reach to our neighbors in the back and up a few houses loved it showing thumbs up. So a little bit of fun in all this move. Later that night we enjoyed the 4th of July family style! Just hanging out watching our neighbors shoot off a fortune in fireworks!  So much fun! 

Today as I wait for the pod to be picked up I am full of crazy emotions! Still so much to do here before we go it was just the 1st load and so much to do in our destination like find a house, so many unknowns but our journey is ahead I trust that God has his hands in this! 

2016

8 mins · 

New Year, New Hope, new Dreams, Fresh starts and setting Goals some realistic some not. 

For me though each New Year requires work letting go of the last year shedding the life I knew and the feelings I was comfortable in and open my heart to making myself better no matter the degree of improvement. Even though I never make a New Years resolution I make an attempt to be a better me. Something that gives me grounds to build on and last. Not too long ago I lived through a year I visit in my head constantly. I think of how I would love to just pretend it never happened, too much Good would be lost along with the bad. I am not supposed to forget I am to learn. That year and for a long time after I hated to be looked at with pity. It took me plenty of time to realize the biggest offender was myself and had to turn that around. I don't move leaps and bounds to heal but I rejoice in every ounce of life I gain not gaining the old but making new. I praise God for getting me through those days now it is up to me to be in his word and follow him. In all that I want to improve on in my own life (which is a lot) I know will come in time if I keep God close in my heart and share his love with others. No I haven't lost my mind just being real.

Even though today is just another day in the calendar it is a reminder to jumpstart your heart for whatever your passions are! Move forward no matter the past, there is not a gauge to tell you how fast or slow to do it. Just keep moving : ) I don't know what this year will bring for me or my family like all of you dream it is a thing of beauty truth is we don't know and there is blessing in not knowing.

I hope you all meet your goals make your dreams happen, find the hope you are looking for, get your fresh starts and those of you that will have the year nobody wants know your not alone. Look to the lord and he will fill your path with what is needed. I stand testimony to Gods love for even in despair I was never alone.

Many Blessings to each of you this year. Find your salvation in the Gospel truth.

https://m.youtube.com/watch?v=ZnuGXvO_l8w

Giving Tuesday

I have seen many stories lately or read posts of people needing food, money for rent and so many everyday living things. It is heartbreaking! I look around at my very messy house and it is what it is! Nothing fancy but how wonderful a home it is I am thankful for it. We have been through struggles yet my heart goes out to all those in need through the holidays. We have always been provided for and I give glory to God for that! I try to help others in whatever little ways I can and I do hope one day to give big the way others did for us. I know that God will continue to use me, I hope I have my heart open and ready when I am called upon! I pray I am able to show my children the importance of giving and to be thankful for all that we have received! 

Judgement

Judgement is something I think we are all guilty of. At some point in our lives we have been judgmental of someone for any number of reasons. Sometimes as humans we think we might know better than someone else. No matter what they are going through. Throughout my adult life I have been the subject to many watchful eyes. As I move forward through I try and keep that feeling close at heart not to keep the hurt close by but the idea of those feelings to help me to treat others better. When I was at the lowest of lows I received many emails, texted and calls informing me that I was not asking for enough help! There was not a need for more. I was treading water doing my best to reach out for the life preservers and then being judged for how I was doing it. I have never really addressed it to those people just thanked them for their caring. The truth is that I WAS reaching out to those around me who had most if not all of my needs covered. In this journey my children needed to be handled with care not just dropped of anywhere, picked up by anyone. There were many offers by very capable hands to care for them however my children didn't know them. In a world that is spinning so fast it was important to me that my kids cling to those they felt comfortable with as much as possible. In a situation I could not control I could still be a good mom and take care of my kids with as much love as in my heart even though I couldn't always be there.

Moving forward I try to listen to those lessons I learned and when I offer to help someone I do it whole heartedly with the intention to follow through when asked but do not take offense if they do not ask me. They may have others coving those needs. I also pray that if they really need my help that God removed any reservations they have about asking.

Again I thank those that God had given me through this journey and even those that offered judgement. Sorry I didn't do things your way God got me through this and will continue to guide me.

Elijah's Journey

Mitochondrial disease awareness week September 14 - 20 2014!

 

 

My awareness is life long as with many that I have met through Elijah's short journey.

Chad and I were devastated when our first pregnancy ended in miscarriage we tried for nearly 2 years and were overjoyed to learn I was pregnant again. This pregnancy was perfect with a slight complication with gestational diabetes however I was able to control it with diet.

My Elijah was born perfect! February 15, 2003 6lbs 8oz sweet baby boy. In the first few weeks he had surgery for pyloric stenosis. We were new 1st time parents and thought that would be the worst our little boy would go through. A couple months went by and Elijah seemed to be growing and hitting his milestones then he wasn't! His eyes would not fix and follow on an object. Knowing that I suffered with a condition with my eyes when I was younger I wanted it checked out ASAP. The eye dr referred my sweet 4month old to a neurologist after he suspected it was a problem with his brain not the eyes. Of course the appointment was months away. Many things would take place before that appointment would ever come.

Elijah was growing slowly and seemed to be nursing ok then one day began to gag like he couldn't swallow. This continued through many of his feelings. Within a week he was dropping weight, looking frail and sickly. I dropped in a store for nursing moms that had a scale. Now I was very alarmed his weight was considerable less than his last dr check up. I was shaking, I called the dr to get him. When we arrived the nurse assured me everything would be fine. It wasn't fine nor would it be fine. 

Children's hospital Denver is where our pediatrician referred us. He was uncomfortable with Elijah's weight loss and other signs of lost milestones. We sat in a small ER room waiting for help. My almost 6month old no way to soothe him. A CT scan showed "significant insult" in his brain specifically to his basil ganglia. What? What would this mean for him and us.The gagging was his ability to suck and swallow weakening because of the damage that already had occurred. He had an NG tube place so he could get his nutrition. Over the next few days, very difficult days we would talk to so many specialist I cannot remember how many or what their specialties were. In and out they paraded! We knew our son would have special needs just not the entire picture.

There we stood around Elijah's hospital crib discussing Mitochondrial diseases and one called Leigh's syndrome. Interesting that a note on the original CT scan taken that very night said suspected Leigh's syndrome. I guess they needed to make sure before they told us. All I really heard at that moment is life expectancy is normally 2years. This could not be true my little baby, wanted, prayed and waited for was dying. We were not just off to a Rocky start to parenting we were living a nightmare.

Leigh's syndrome or medically known as subacute necrotizing encephalomyelopathy was a horrible diagnosis. It is a progressive disease that would continue to cause parts of Elijah's brain to die. White matter could already be seen in a large area. The neurologist simply said "take him home and love him" that is what we did.

We would not see much of the Doctors and hospitals after that just for check ups, vaccinations and to watch his progression. None of which would change his prognosis. We kept him home on hospice where he could live peacefully or as best we could provide.

Leigh's disease in Elijah they say was text book. There was nothing about him that was text book to me, he was my son a living breathing child. I watched this disease progress and all the abilities my son did have were gone. I cannot even remember the exact time he stopped crying. It isn't that he didn't want to but he couldn't cry any longer. Even the most primal abilities died as the damage in his brain progressed . It was difficult knowing the end would be soon. Anger, resentment and frustration were knocking at my heart! Living my life caring for my son I did my best to keep it out. We had no idea what the future would hold, we only knew our son needed us. I learned to just put my faith in The Lord he would carry me/us and for what I did not know he would take care of. We tried to do all we could with and for our son. We had to reach deeper for the joy but when we found it it was bountiful.

Through Elijah's life I felt a peace and closeness to The Lord. To hold my son was an enormous gift. To feel the lords peace through him was a feeling I cannot describe. He was fed through a g-tube, countless seizures a day, had his own cupboard for medications, could not walk, talk or communicate like most of us could yet this little boy was the most amazing kid and I got to be his mom!

Elijah died November 25th 2005 the day after thanksgiving that year. He was just 2 1/2 years old.

Through Elijah's life I learned my life's verse proverbs 3: 5-6

5 Trust in The Lord with all of your heart, lean not on your own understanding 6 In all of the ways submit to him and he will lead your paths strait.

In the 11 years since I had Elijah my journey always seems to be grounded with this verse! I cling to it in the darkest times and it shows me where the light will come from when it shines and it does come!

I also wanted to share information on Leigh's syndrome. I try not to dwell on the text book stuff but it is sometimes the only way for people to understand. I did find that to google "Leigh's syndrome" when Elijah was diagnosed and then today 2014 was a completely different experience. Back then it was as if we were alone in our experience with this ugly disease now with all the information and social media families have an easier time connecting and finding the much desired knowledge when your child is diagnosed. Even so I don't think the prognosis has changed much.

Contact UMDF for information and support at 888-317-8633 or connect@umdf.org

What is Leigh's Disease?
Leigh’s Disease is a progressive neurometabolic disorder with a general onset in infancy or childhood, often after a viral infection, but can also occur in teens and adults. It is characterized on MRI by visible necrotizing (dead or dying tissue) lesions on the brain, particularly in the midbrain and brainstem. The child often appears normal at birth but typically begins displaying symptoms within a few months to two years of age, although the timing may be much earlier or later. Initial symptoms can include the loss of basic skills such as sucking, head control, walking and talking. These may be accompanied by other problems such as irritability, loss of appetite, vomiting and seizures. There may be periods of sharp decline or temporary restoration of some functions. Eventually, the child may also have heart, kidney, vision, and breathing complications.

Leigh's is caused by more than one defect.

According to Dr. David Thorburn, at least 26 defects have been identified. These include a pyruvate dehydrogenase (PDHC) deficiency, and respiratory chain enzyme defects - Complexes I, II, IV, and V. Depending on the defect, the mode of inheritance may be X-linked dominant (defect on the X chromosome and disease usually occurs in males only), autosomal recessive (inherited from genes from both mother and father), and maternal (from mother only). There may also be spontaneous cases which are not inherited at all.

Estimation of Incidence
One estimate of the incidence of Leigh’s disease (Leigh Syndrome: Clinical Features and Biochemical and DNA Abnormalities by Dr. David Thorburn, PhD of Melbourne, Australia) is one in 77,000 births or one per 40,000 births for Leigh and Leigh-like disease (a milder version of the syndrome, often not proven by imaging or autopsy). However, this may be an underestimate since mitochondrial diseases tend to be under-diagnosed and misdiagnosed.

Treatments
There is no cure for Leigh’s Disease. Treatments generally involve variations of vitamin and supplement therapies, often in a “cocktail” combination, and are only partially effective. Various resource sites include the possible usage of: thiamine, coenzyme Q10, riboflavin, biotin, creatine, succinate, and idebenone. Experimental drugs, such as dichloroacetate (DCA) are also being tried in some clinics. In some cases, a special diet may be ordered and must be monitored by a dietitian knowledgeable in metabolic disorders.

Prognosis
The prognosis for Leigh’s Disease is poor. Depending on the defect, individuals typically live anywhere from a few years to the mid-teens. Those diagnosed with Leigh-like syndrome or who did not display symptoms until adulthood tend to live longer.

A day of rememberance

September 11 is a day of remembrance for our country as so many lost their lives in the World Trade Center. This day will always be a day most of us will remember. We know where we were, what we were doing and the sadness we felt for all.

As I walked into the hospital September 10th I knew September 11 would take on a new form of grief for me. I cannot explain how you prepare yourself to give birth to a child that has already died. Such emotions and a want in your heart to just give up, but you cannot. You must continue both physically and mentally. I am heartbroken that Isaiah is not here with us yet I know he is safe.
 
9-11-14 how do you celebrate the birthday of a child that passed before his birth? I will celebrate the idea, life moments and time in utero I did have Isaiah! Not how I would like to "celebrate" for I fight to find what is uplifting about the death of a baby. Instead I concentrate on the power of Isaiah's name! Chosen specially for him, a name I always loved but brought to truth with the birth of my 5child, stillborn.

I asked my facebook friends to do this and the response has been amazing. It gives my son a voice, a message and a purpose. Please join in if you like. I ask you all to share the power in the name Isaiah today! Verses from the Book of ISAIAH that were with us through our journey with Nathanael and helped us walk through saying goodbye to our sweet baby. Some may have never heard the meaning and encouraging words from the book of Isaiah! I choose to honor my son by sharing those words from which he was named for! Help me bring meaning to my sweet boys life/death!