Archive | August, 2012

Week of adjustments

31 Aug

A full week. I am tired. What did I do when I worked? It was a good week. A lot to celebrate, although I find celebrations make me pause and ponder too. How can it be that the days and years pass so quickly that my kids change before my eyes. I am blown away at how God allows their brains to soak up so much and their bodies naturally mature and develop. It’s nothing I feed them or have any/ much control over.

Paige is a little girl with developing emotions and feelings. She has questions and opinions about a lot. Today I found myself snuggling with her and somehow discussing heaven and hell, I quickly called for Adam. She finished her first week of second grade and was quite proud of her week. I love to see how she cares for Hayleigh. The last few nights she offered to read to Hayleigh, and we come back to find them asleep together in Paige’s bed.

Hayleigh proudly showed me when I picked her up from school her empty lunch box, with a look of mom I did it! She also wanted me to know that she played with Paige’s friends at recess since she liked to play with Paige and Olivia wasn’t there. I think this is okay, I presume it is natural for the second child to grow up faster than you want. She wants to know why I won’t let her go to school everyday. One day she will understand when she doesn’t want her baby to go yet. She is so fun loving.

Mollie and I are adjusting to days of just us. She talks A LOT when those girls aren’t around. I just have to chuckle because it is much more noticeable when it is just us. She is fun.

I am tired. I am working hard figuring out who this girl is inside this body. What do I want to do with my days? When will I feel normal? I mostly hate waking up after 8 hours of sleep and still feeling tired. I had the joy of a clean home today thanks to a lovely friend. I love a good clean house! This weekend is full but hopefully it will move at a pace that is manageable for all.

The man of this house is asleep next to me on the couch. You think we might both be tired? He is enjoying being at work with His SMO buds and teaching the kids more about Christ.
The week was full!

Mollie

30 Aug

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Mollie our third and last baby girl. Time has sure sped by and often leaves me pondering how she can be 2 1/2! But boy she is two! She is so stinking lovable it hurts, but she can turn on a dime if things aren’t moving in the direction she had hoped. Things that happen to bother Mollie; peeling her banana for her, buckling her seat, opening anything packaged for her and someone taking anything that is “hers” within 5 ft of her. This stage of parenting is draining and demands consistency. Tonight she enjoyed the end of a homemade ” healthy” fudge bar. She was thrilled and enjoyed every last drop! Nobody was thinking of taking that stick from her. Being a mom is life giving and life draining, thankfully more the primary than the later.

Preschooler

29 Aug

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Not only do we have a 2nd grader but we have added a preschooler to the mix! It was another fabulous day! One of her first things to report about was playing outside. Hayleigh chased the boys with sissy at recess! Oh man this could be the start of a long struggle! Baby girls, you want to be chased one day, no chasing for you!!
I think Mollie missed the girls but will get used to her mommy time. She has grown quite attached.

Train up a child in the way he should go; even when he is old he will not depart from it. (Proverbs 22:6 ESV)

Officially a 2nd Grader

28 Aug

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Paige has completed her first full day of second grade. In her words, ” today was wonderful!” She had a good day, and mom was ready to have her home come 3:00. I am thankful she enjoys school and her friends. I pray that she will grow into a little girl that continues to see and learn more of God’s truths. And that He would instill in her a desire to know Him more while at school and home. From the mouth of a dear friend who teaches, “pray for your child’s teacher!” I am praying for Mrs.Taylor and her classroom of 14 seven year olds. I hate the time away from Paige, but trust that these days are to teach and help her to grow socially, academically and spiritually.

Fathers, do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord. (Ephesians 6:4 ESV)

5 girls and a mall

27 Aug

Have you ever wondered the true definition of the mall? Today we looked it up.

n.
1. A large, often enclosed shopping complex containing various stores, businesses, and restaurants usually accessible by common passageways.
2. A street lined with shops and closed to vehicles.
3. A shady public walk or promenade.

Today we ventured to the mall with Mimi. It was a fun day. Forced fun even if it wasn’t really fun at all. It is the last day of summer for Paige. It was raining so all of mom’s planned fun was not to be. We started the day with a treat for breakfast, this is a big deal at our house. After getting the day organized and “planned” we ventured out to the mall. We were intrigued by this word and who decided that the stores would make a mall. It started out rough with a battle of wills on who would push the stroller. The problem was the child who was intended for riding wanted to push! With a snack readily available from Mimi we made it past the entrance. The mall isn’t nearly as exciting for a kid as I once thought. I did realize I spend far less money when I take the kids! The highlight for them was most likely the play area, you know the petri dish for germs. We had a good day. Many ask how Paige feels about school, my answer is excited but not thrilled…a bit indifferent. I am sure tomorrow will be a good day.

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Meals on Wheels

26 Aug

I feel too young to have just experienced close to six months of meals on wheels. Meals on wheels is a service that generally services the older population when cooking gets to be too much. I know that our family is not the easiest to cook for as we generally follow a vegan diet, and includes three children and a type 1diabetic. Many of you conquered your fears and ventured in to our world. Everyone has done a wonderful job of helping Adam and I get meals on the table and keep our children fed. So many went above and beyond and we are grateful. We have enjoyed resourceful, and practical gift cards to help us when cooking wasn’t an option. We are overwhelmed by your generosity. The love, prayers and support of so many of you has carried our family through this life changing journey.

But he answered, “It is written,
“‘Man shall not live by bread alone,
but by every word that comes from the mouth of God.’” (Matthew 4:4 ESV)

Monkeys

25 Aug

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If you didn’t recognize these monkeys, let me introduce you to the Armstrong girls. We have spent time trying to soak up these final days of summer together. This week we have had a sick Mollie. Seems as though each week the kids take their turn of not feeling great, but we are on the up swing. We have played at the park, dined out for lunch, girls have enjoyed the pool, and tried to make fun out of most anything. I have always hated the end of summer, but boy has this one felt cut short! We are thankful for the days we have played and shared together. The girls don’t seem to have missed a beat this summer. There smiles prevailed through the trials of the invasion of our care free days. Thankful.

Hope

24 Aug

I have a solar flower in my window that moves when it is lit by the sun, it has the word HOPE across the pot of the flower. My new friend, Beth from G110 gave this to me last week. We became friends during our stay at the clinic. She was the first person I met as I entered this new, foreign world of beeps, poles, and loneliness. My first night we chatted as we walked the halls with our poles. She was at day +4 when we met, and I at day -6. She had gone before me on this dreaded journey I was beginning. We established a friendship that was special. It is strange how you instantly bond to someone due to your circumstances. I remember feeling curious and anxious all at the same time as I got to know Beth. Her daughters names are Alison (19) and Ana(15). Not only did her daughter and I share a name, but both her girls have type 1 diabetes which as you know is a part of the Armstrong world. Our paths had crossed and our friendship unique as we journeyed and cheered each other through hurdles.

Towards the middle of my first week on G110 there was a code blue on the floor. I spent much of my days in the hallway and much to my surprise all the hustle and bustle of nurses and docs and crash cart were head to Beth’s room. I panicked. This could not be happening, my new friend, she was not feeling great that morning but certainly not that ill. I wanted to know more, but I could not. She was transferred to ICU. This was the beginning of a new process for me. Fear had snuck in and wanted to make itself comfortable. I had to revisit God’s sovereignty and allow Adam to help me remember He was in control of my days and my life. He holds each of us in the palm of His hand, and He is faithful regardless of how things appear.

Beth returned to her room, #20, two days later. I was so thankful to see her and love on her as I could. She seemed more tired than before and I saw less of her in the hall, but on my daily walks we would visit and get caught up on how the night went. You see, while within the walls of the hospital there isn’t much to talk about outside of the horrible food, nurses, how we slept, and how we felt. She was fighting to live and to be healthy. I enjoyed getting to see her family and know her support team. Our families all get to know one another as they walk the less desirable road alongside of their “admitted patient”.

Beth was discharged about a week after I was and we had the opportunity to meet up at several of our out patient visits. At our appointments two weeks ago she let me know she would be readmitted to deal with an infection. The following week mom and I headed up to G110 to see her as she had something for me. This visit was harder than anticipated. I had not been to the floor since I was discharged and as good as it was to see the familiar faces of the people who got me through this part of my journey it felt awkward and maybe too soon. Today I know my visit had a purpose, for this visit would be the last time I would hug and see my new friend Beth. Infection took over her body and her weakened system could no longer fight this up hill battle. She passed away yesterday and her husband was in contact and allowed me to be a part of their painful journey. My heart is heavy and burdened for the ones left here to live and figure out their way without, wife, mother, and daughter. My heart and mind struggle to connect how the “on time” God that we serve and I speak of so often could think that this was the right time for Beth to come home. I am forced again to revisit the HOPE that we are given each day, and that our God’s sovereignty is constant. Please pray for her family as the days ahead will be ones they will never forget.

Rejoice in hope, be patient in tribulation, be constant in prayer. (Romans 12:12 ESV)

Hickman removal

23 Aug

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If you glance back to June 21 you will be reminded of the day I had my Hickman placed. This was not a fun process for me. If I have horrible memories of this journey, that day by far was one of them. It was miserable, so you can imagine one of my worst fears was to ever have a need for a replacement Hickman (line). While back in the hospital my Hickman slipped, but the nurses assured me the “cuff” ( which is a marker for them to be sure the line is in far enough, and this cuff provides another protectant for germs and infection). Thankful I didn’t need to replace it we move forward in our story.

Today was the day to get this foreign object out and to begin a new adventure of blood work without a line. After seeing the dr and learning all is well and things are progressing we proceeded to the same dreaded waiting room we visited on June 21. Thankfully this experience was much simpler and done in a recovery room, and not a surgery room. My previous explanation of the slip leads us to this place in the story. As the nurse practitioner enters the room to tell me about the procedure, she looks down and sees my lines hanging out my shirt, and says “wow that’s a long boy”. I didn’t realize we had choices of size and length, but clearly I won out with a long boy. I guess if I were really a guy and not just by my XY chromosomes a guy I might have been proud. Nonetheless she proceeds to feel for the cuff along the line in my neck and couldn’t feel it. She pulled down my bandage and was stunned to show me what she believed to be my cuff hanging out of my chest by inches. My Hickman has been this way for over 6 weeks. She says, “wow” I say, ” good wow or bad wow?” she laughs softly as I hear her scissors snip the stitch and she says, ” you must have good karma” I said, ” nah, it’s God’s grace and mercy!”. The cuff that had slipped 6 or 7 weeks ago is an agent to help protect! Mine was gone, but My Protector was there all along. It is great to have the hickman gone. Even though life isn’t completely normal, Adam reminded me to celebrate the steps towards that, and so we celebrate!

God shall arise, his enemies shall be scattered; and those who hate him shall flee before him! As smoke is driven away, so you shall drive them away; as wax melts before fire, so the wicked shall perish before God! But the righteous shall be glad; they shall exult before God; they shall be jubilant with joy! Sing to God, sing praises to his name; lift up a song to him who rides through the deserts; his name is the Lord; exult before him! Father of the fatherless and protector of widows is God in his holy habitation. God settles the solitary in a home; he leads out the prisoners to prosperity, but the rebellious dwell in a parched land. (Psalm 68:1-6 ESV)

Day + 7 letter

22 Aug

For some of you it is clear when I type a letter from Adam with the day. The meaning of day + 7, some may wonder?… On day 0 which was transplant day, they call your new birthday, which mind you is exactly 6 months after my official birthday. I might have reason to celebrate half birthdays! So day + 7, is post transplant day 7.

I have chosen to share some of Adams interactions with me on this journey as I feel it allows you to not only know me on this journey, but how my favorite man has dealt with and journeyed with me. He has blown me away in how he embraced this and allowed God to give him the strength for each day. When we named the blog I knew it needed to incorporate our whole family, as this was not just “my” story, but our journey together.

“for we were so utterly burdened beyond our strength that we despaired at life itself….but that was to make us rely not on ourselves but on God who raises the dead…On him we have set our hope.”
2 Corinthians 1:8,9, 10

“blessed be the god and father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our afflictions, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves, are comforted by God.”
2 Corinthians 1:3-4

My love,
It is 7:00 in the morning on July 10 or day +7 of our very bizarre summer. Paige and Hayleigh are in the play room taking their barbies on shuttle rides. Hayleigh just asked Paige if she wished we were still at Nemacolin? Mollie is still sleeping upstairs, it all seems so normal. But you aren’t coming down, and you aren’t on a run. But even though you are far from us in some ways we are closer than ever. Paul here speaks of what we are learning. He speaks of suffering and of comfort we too can praise God for the comforting of us in the midst of this. I love how it says this isn’t just for us , but so we can spread that comfort. I pray that our faith and actions are bringing God glory and that people are seeing Him in us. We are definitely learning lessons of dependence, teaching us to rely on God and not ourselves. Whether, child care, meals, well-timed phone call, a generous gift or a tearful hug; in all of these we have felt the comfort of God. May we continue to “patiently endure” and hope, rely and depend upon the God of all mercy and the giver of life. Let us set our hope on Him and His goodness not merely for the end of this or the hope for a return to normalcy. I love you and miss your regular presence beautiful.

Love Adam