Forever Changed

Merry Christmas.   I hope everyone had a blessed holiday.  It has been a busy week.  We traveled to St. Louis for Christmas to be with my family.   We all enjoyed spending time with them.  I miss them so much.  My boys love their Grandma and Papa, Aunts, Uncles and cousins.  Another thing I love about St. Louis (besides the Cardinals), I got my White Castles.

Nathan is still pretty congested, but at least he isn't throwing up as much.  I did not feel well at all over the holiday, but I am starting to feel better.  We are finally back home.  Nathan has been so cute to watch.  He tries to jump, but he can't get off the ground.  He sways back and forth whenever he hears music.  He actually said "Night Night".

My little Isaac turned four.  He is getting so big.  He is amazing on the computer.  He talks like he is a lot older.  He is so smart for his age.  I know everyone says that about their kid, but he has had to grow up really fast.  He told Grandma yesterday, "Nathan does not eat.  He has to be fed with a tube."  He will ask me, "Mommy, is it time for Nathan to get another bolus?"  A word he should never have to know.  My heart grieves for him.  He used to be mommy's little boy.  When Nathan was diagnosed he was ripped away from me, forever changing our relationship.  Overnight, his mommy wasn't there anymore.  I wasn't a part of the bedtime routine.  I missed reading him books, and going on walks.  I missed the new words, new adventures and being a part of his life.  The months spent in and out of the hospital did not help.  I was away from my precious boy for ten months.  He would ask, "Mommy, when are we going to be a family again?"

In the weeks leading up to Nathan being born, I just knew.   Shawn and I did so many special things with Isaac.  I relished every moment.  We took him on nature walks, the swimming pool, feeding the bison.  I knew everything was about to change.  I would have no idea how much.  I knew it would hurt, but I don't think anything can prepare you for it to hurt this bad. 

I am home now, but it is not the same.  When Nathan got home, Shawn wasn't as comfortable with Nathan's routine.  It was a lot of work, and it was defaulted to me.  So even though I was there, Isaac's needs would be put on hold.

The little boy that could not leave his mother's side, my son that would cry if I left the room, doesn't want me in the room. He is mean to me.  He tells me to go away, he says he doesn't love me.  Oh, how my heart breaks.  All he wants is his Daddy, he cries if he has to be with me.  I know part of it is him growing up, but it's not all of it.  Another reminder of how Nathan's illness forever changed our lives.  Nathan may be getting better, but things will never be the way they were.

I am supposed to act like everything is okay.  The whole world goes on, but no one knows the struggles.  They say how good Nathan looks, but there is a constant fear that something else will happen.  The chemo can have delayed effects, and each new symptom scares us to death.  The effects this journey has had on Isaac, on me, on Shawn, and our marriage are real.  They are still there.  We are doing our best to heal, but I'd be lying if I said it was easy, or that it didn't hurt.
 
Please pray with me for my relationship with Isaac.  Pray for God to give me the wisdom on when to give him choices and when to be firm.  Pray for me to know how to love my son, and for him to love me back.  Pray for my broken heart.

The Lord knows my heart and I must not run from Him, but to Him. . . .  Lord, I know my hope comes from you.  You know my heart is hurting.  God give me wisdom.  Father, I need your peace.  I can not do this on my own.  I could not have gotten this far without you.  You have the power to make all things new, life comes from you.  The world was created by your spoken word.   Lord I humbly ask you to heal me grieve, help me heal, show me what I should do to be a Godly mother, and wife.  It is in You that I have hope.  You are my rock and I will not be shaken . . . .
 
Come to me, all you who are weary and burdened, and I will give you rest. 
Matthew 11:28

 Be joyful in hope, patient in affliction, faithful in prayer. 
Romans 12:12

Do Not Be Anxious

It has been a challenging week.  I really don't want to go into specifics other than there are a couple potentially significant challenges we are facing.  I am trying to trust the Lord and not be anxious.  I know the Lord will provide.  So just pray that the Lord will provide just as He has throughout the entire journey.  Even if it does not seem possible with our own resources, nothing is impossible with God.  This is one of my favorite scriptures that I have posted in my house.  Anxiety is something I often struggle with and this helps to guard my heart.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:5-7

Nathan and I are still sick, which is why I haven't posted yet this week.

My little brave boy Isaac turns four tomorrow.  I am thankful for the richness he adds to our lives.  I love his giggles and energy.  He loves our nightly family dances to a Veggie Tales worship CD.  He loves to jump.  He loves glow sticks, reading books, slushees, and pigs in a blanket (pancakes with sausage) for breakfast.  I love that he still likes to snuggle.

Update on Nathan:
Tests show that although his liver function improved slightly, they are still high.  We are holding his infusions for now.  They ran some additional tests to see if he may have a virus since he has gotten sick several times. 

Yesterday at the ophthalmology appointment were all surprised to find out Nathan has fluid accumulating at the optic nerve as it enters his right eye.  Right now in the doctors terms, "it brings more questions than answers".  It potentially could be medicine related.  The Bone Marrow doctors are going to have further discussions with the ophthalmologist, and they are doing a thorough review of records to see if anything may have potentially caused this.  Right now his vision is fine, we don't know what the implications are at this point.
We just need to keep praying!

Plan Delay

Our family needs more prayers, especially Nathan and Isaac. 
Yesterday was a lot longer, and harder at the hospital than I had hoped for. The feeding clinic appointment went good, we made a plan to ween him off the feeding tube. In the bone marrow clinic they had to do a baseline blood test,  the blood draw was nothing short of traumatic. We did not have our regular nurse. The first nurse fished, and kept trying to reposition the needle while Nathan screamed. Two other nurses were holding him down. He looked up up me with the most heart wrenching look. I could not take away his pain. The second nurse stuck him twice, still no blood. They finally called a special vascular team, and it took a while for them to get there.

The hospital called with results. His liver and kidney levels which had been elevated, more than quadrupled from last week. High is not good, it means his kidney is not filtering like it should. We are hoping it is due to a cold / virus he has, he has not been feeling well.  The mucas makes him throw up a lot with his feeds, which could have also caused him to be dehydrated.  Bottom line, his kidney and liver function is too compromised for him to be weened right now. The plan is put on hold. I am disappointed and nervous and worried. Please pray for Nathan.

 

As for Isaac, it is a continual balance to meet both of their needs.  There are times Isaac's needs have to be put on hold for Nathan.  He seems to freak out when Nathan throws up.  It shows itself as acting out, but I think he's worried.  Plus we are intently focused on Nathan which doesn't help.  On the plus side we got to take Isaac to a special waterpark to celebrate an early birthday.  The doctors cleared Nathan to go into a public pool for the first time.  It was fun.  There are blessings among the trails.  We were thankful for the time to celebrate as a family.  I will post more pictures soon.

Thank you for all of your prayers.  We are praying God will bless all of your families this Christmas season. 

Hey, Hey It's A Monkey

Just a cute note.  So I turn my back for a split second in the kitchen, and I turn around Nathan climbed on top of the chair and was getting on top of the table!  I didn't even know he could do that.  He is fast!!!  He's always been my little monkey.

We had a great night as a family.  Nathan loves music and teeters back and forth to dance.  We had a family dance time to a Veggie Tales Worship CD.  We were all spinning and jumping together.  What a sweet moment.

Thank you everyone for your prayers. 

Transparency, An Internal Battle

Yesterday and today have been really tough emotionally.  I promised I'd be transparent.  There's an internal battle waging within me.

So many days I try to be encouraging, and some days, I just am weary.  I am discouraged.  Most people just can't understand our life and the stresses.   The constant manual syringe feeds, ensuring Nathan gets his hydration for his kidneys, creams for his skin, infusions, doctors visits, food logs.  The routine, the fears that your child will get sick again, or have another side effect from the chemo. Every cough puts you on edge. Keeping on top of the bills, battling the insurance company when stuff gets denied, working full time, somehow trying to keep the house clean (which usually is last on the list), trying to be a wife, trying to be a good mom, and cooking (which we end up eating out way more than I like).

Maybe part of the reason I'm having a hard time is on some level it was rejection. . .you let someone into your home, and life, and were judged. I know our lives are chaotic, I know that I am not always on top of things. With work, its hard to keep on top of the house. Emotionally some days are so hard.  There are a lot of things that I do not do well some days. . .iclude being a Mom.

I hate having to leave my boys. But when I'm here, sometimes I get so stressed I have to kind of zone out. People don't understand our life, but are quick to judge. At least that's how it feels. Things may be better than they were, but I can get so sleep deprived, so stressed beyond anything my body can comprehend, I don't feel anything. Inside I am still not the same. I know I am not always the best Mom. I feel like I am failing in so many areas. . .   Add it to the list.

I argue with myself. . . I should remain steadfast.  Look at how Paul praised God in the midst of his trials.  I am trying.  Just sometimes my heart hurts so bad, the pain so intense that everything else feels so far away.  I feel so alone.  But the Lord should be the one to fill my cup.  

Please do not think that I am not grateful.  The Lord is so good to have blessed us beyond what we deserve.  Just some days are hard.  It is a grieving process.  From the moment Nathan was diagnosed, nothing in our life will ever be the same.  My friendships are not the same, work is not the same, my marriage is not the same, my relationship with Isaac has changed forever.  People want to relate but its hard, I feel alone.

But in the midst of my pain the Lord is still there.  He hears me crying out to Him, my tears are not unnoticed by Him.   I don't debate on whether or not He's there.  I don't ask Him to take my burden away.  God's plan is perfect, this is His will for me.  But there have been days where the pain was too much to bear I asked for a new day.  Today I am trying to focus on the goodness  of the Lord and who I am in Him.  It's tough.  Focus on the truth:


The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.
Joshua 1:5

Faithfulness

I am in awe of how the Lord provides.  At first I was beside myself upset that our nanny had quit with no notice on Thursday.  Grieving for the impact to my kids, and all the change they've already been through.  I was uncertain of the impact to our jobs.  But the Lord provided me with a peace that couldn't come from anywhere else.  He calmed my heart.  My faith is in the Lord, not in man.  I will not be shaken.

Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.
Psalm 55:22 

Within hours, I had someone to step in and watch our children.  I came home yesterday from work, and she graciously offered to serve our family by watching our children.  But God wasn't done yet. . . she is going to watch our children until June!    I still am in amazement of how the Lord goes over and beyond what we can imagine.  It was such a grueling, hard search last time.  But this time, I was not anxious.  I put my faith in our God that never lets us down.

For I have always been mindful of your unfailing love and have lived in reliance on your faithfulness.  

Psalm 26:3

I do not hide your righteousness in my heart; I speak of your faithfulness and your saving help. I do not conceal your love and your faithfulness from the great assembly.

Psalm 40:10

Please pray for my Isaac. He can be aggressive with Nathan.  I do not know what is being almost 4, and what is because all we've been through.  Pray for his relationship with Nathan.  Pray for us to know how to balance both of their needs, and wisdom on how to nurture and discipline Isaac.