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!

My Sweet Isaiah

Sweet baby your life was a blink in time yet your heart will beat with mine until the day I take my last breath and my heart beats for very the last time.  To think of you my little one leaves me wanting more, pictures, memories, anything or really it leaves me wanting one. One minute of your life in my arms alive. It is true that you never opened your eyes to this world. There in your safe place you lived all of the days you were given to us. You lived quietly for a while before we even knew you were there. Then one day you made it known, at first a pound here and there then a flip and a flutter. Wait what is that I feel. A flip and a flutter was you knocking on the wall saying here I am mommy! A test and a drive later we were shocked, excited, scared, and overall rejoicing. We were going to have you. A forth boy to add to the Kurtz family. Your sister was a little sad that we already knew your were a boy. At 20 weeks mommy was halfway through our pregnancy.  For months you were safe and sound without anyone tainting your presence. We spent the next few weeks preparing for you and discussing a name. A name worthy of such a miracle. You were a miracle. Only God our Father could have placed such a gift inside my body. Your life outside my womb was not to be. You and I son we had such a connection that mommy knew you were going to be special. This pregnancy had some differences from others. I tried to push any odd feelings I had away and concentrate on your birth. One day I couldn't let it be and I hadn't felt you move. I had not ever experienced the heaviness of a belly full of a baby yet empty of life. I knew in my heart you were gone. I hid my concern even from myself, hoping someone would tell me something different something I didn't already feel. The nurse, then the ultrasound tech then finally the Doctor your life was no longer. No heartbeat they said and they really didn't have to because I could see with my own eyes I could hear nothing with my own ears. Your little body was still there but your heart beat no longer. Looking at your brothers and your sister in the room with me, I held my tears. I Knew your birth would be soon. I knew it would be difficult. I wasn't ready, there was no preparing for this. I didn't get to say goodbye. I didn't even get to meet you yet your body was still there. I have given birth to four babies yet your birth was by far the hardest. In the depths of my emotions I was to muster up enough strength to give birth. You were not in the proper position so the Doctor turned you then Daddy and I were alone waiting to see you. A few hours later you were here but not here. I held your lifeless body longing for your spirit to be there too. Your body so little and your skin so fragile. You had lived all you would live inside of me. 34 weeks sounds like a long time, it isn't very long at all. I didn't realize how precious those weeks were. I didn't realize it was all.  After your birth we spent time with you, holding, kissing and wondering what would have been. You were loved little one. You are loved! I didn't even know you yet I missed you very much. One week later we placed you in a beautiful cemetery not far from your older brother. Your life will never be forgotten. You were and you will be loved forever!

Isaiah a name fit for you! So special you are...

Isaiah September  11, 2013

Just below the surface

I have carried the loss of a child in my heart since 2000 when I miscarried our 1st baby. Then when Elijah passed away my heart was heavy yet I didn't crumble when I talked about him because it would seem that the moment I started to JOY would spill out! Strong as I may seem to people I am a mushy mess this week. They may not have seen the tears as I turned my head and swiped them dry and took a lung filling breath before I spoke any more words, they are there just below the surface almost impossible to hide. I knew this year would be tough but never expected it to be this hard!

Overwhelming sadness

As I remember Elijah there were still so many wonderful memories they overshadow the despair. I am struggling to find those joyful moments in Isaiah's life. This is just so difficult. Trusting in our lord knowing Isaiah is with him is my Joyful moment but selfishly I would have liked to see him a year old playing at the park in the water sprouts with his brother today!


Isaiah
September 11, 2013

September

September oh how I loth thee. Anxiety no I wouldn't say that but I will say I feel a pain in my heart like the band aid has been removed. Just a few days away I will just keep walking as I have done for so long. Over the next few weeks I will attend walk for childhood cancer research in honor of one of my sons raise awareness for mitochondrial disease in memory of my 1st born son and breathe through the 1st anniversary of loosing little Isaiah. I have trouble saying his birthday. Maybe someday it will be easier but for now I cannot. At some point Nathanael will have his 6 month scans. Then as the month comes to an end I will brace myself for the parade of 1st birthdays from friends and family who had little ones last year and celebrate with them as I have each milestone their children have had throughout the last year. So hard but I know God will be walking this crappy month with me. The realization that I have had to sons die and held their lifeless bodies is just overwhelming and hard to accept. Still I must it is my truth.

I know other people live way more difficult lives but it doesn't keep mine from being hard. I would say I am doing my best but I have plenary to work on so please don't Judge me I am a work in progress.

September 1, 2014


Let the tug of war with awareness ribbons begin!

September is childhood cancer awareness month

One week 14th-20th in September is mitochondrial awareness

And well sadly I am also very aware of pregnancy and infant loss this month as well even though officially they don't get the spotlight until next month.

I think we should all learn a little something when someone we know is struggling no matter the illness! We had so many that rallied around us through each devastating trial. They didn't care what which disease we were facing. They only cared how they could help.

There are so many other diseases out there too that are underfunded and misunderstood. To those affected it is often the only one that matters because it is close to their hearts and they see the effects everyday.

Just love those around you : ) thank you for loving us.

Everything I ever wanted

Out the door we went. I was pushing the stroller loaded with my 7 month old son and alongside were twins, on our way to kindergarten 2012. School had been in session a little over a month at that point and I remember thinking wow, so this is normal? I enjoyed every part of it! It took years but this is what I always wanted, really wanted. Doing things a normal mom did. Ahhhh I took a breath and soaked it all in. Life was so beautiful. Unforeseen was the challenging and devastation of 2013.

Just as the calendar year changed so did the quiet of the life I was enjoying. The life I called normal. The life I had desired for so long. Struggling with activities, gymnastics  Taekwondo and a 10 month old, the balancing act of it all was dwarfed by my sons cancer diagnosis. Everything set aside to care for him.

Cancer is a scary word. It is a word that brings you to your knees. For me it didn't seem so scary at the time. I guess it needed time to sink in. It all came together (or apart however you want to look at it) rather quickly once he was diagnosed. In the hospital I often thought of his twin sister. They were only 5 how would she go through life if he died. How was I going to get her through this? How was I going to get through this? Pressing on these types of questions popped in and out of my head all the time. I tried not to stop on any one for it was just a thought and I could only deal with the truth of the day, facing what we knew not facing the scary things in our heads. Yes it is something to think of the future but Gods got that.

As school gets ready to start August 20th 2014 the twins are going into 2nd grade! We are all ready for that walk, the one normal people do. My 2year old in the stroller and the twins on each side.

In a good place...

It is summer and this year so much different than last. About this time last year we were deflated, holding our breaths and hoping for things to get better. It took longer than we thought it would and little did we know it would get way worse before we could even see a glimpse of light. This year we have let ourselves take in a chest full of air and let it out slowly. With end of treatment scans for Nathanael showing no new cancer growth and June 13th his 3months post treatments scans showing NED no evidence of disease we are breathing for the first time in a long time. We are not dancing for we know that Cancer is an ugly word and it should not be taunted. We are excited for our son who for the 1st time in a year an a half can be a boy.

Life in pictures

In November we had family photos done. They were beautiful and I used a few of them for our Christmas card 2013! There are many I will cherish for life. I didn't realize that this would shock people. I didn't realize the amount of judgement that would be placed on me. "So soon after you lost your baby" hmmmm my pain is real and very sharp because I don't fall into a big pile of mush when you see me doesn't mean I don't long to hold my baby. In fact I shed tears everyday because I held my lifeless child never did I see him take a breath of life! Not even a moment for me to hold as a memory of his life. My baby died inside me and I birthed him and after a few hours I had to walk away.  I had the pictures taken for many reasons the biggest being that our family had just undergone a tremendous amount of pain and this is proof that we were still standing! I also appreciate that so many have prayed for our family and have had many say that they keep a photo close by to remind them to pray. So whatever people think it was something we did! My advise go get your family picture done because you never know what tomorrow holds.

2014

We made it through the year 2013! I cannot believe and of us are still standing.
Only by the grace of God