If you have never been to the Glen Eyrie Castle let me fill you in on what it’s like. It’s a castle nestled in the mountains of Colorado Springs. Everything about it is serene. There is so much love and history that surrounds it.
You feel Gods presence everywhere you go.
Ill touch in the JOURNEY OF PRAYER in my next blog.
I tried to find time to write to you all, I’m sure your anxiously waiting to know about little Lincoln! I just never felt right strong enough writing this blog, every time I sat down to write it I ended up choosing sleep over writing, maybe that has to do with me being up feeding linc at night, the mere exhaustion of tacking the daily routine of life with three kids, or showing you the side of my heart that I tend to not let be exposed.
I’m ready to write. I’m sitting at the castle with the sun embracing my skin and the smell of pine tickling my nose, sheltered under Gods wings.
I still cry, a lot.
I was with a couple people and one person had a baby in their arms, they went on and on about this baby and lovingly saying how perfect it was. My eyes got weak with salty water. As I looked down at Lincoln in that moment Satan told me a lie- your baby is not like that one, your baby is not perfect. I just wanted to run away and hide and cry and scream. How could someone sit there in this moment knowing that Lincoln is here and who knows my heart dearly sit here and talk about perfect around me???? HOLD ON. It hit me right there. God is bigger than that and God is in MY heart. How can I let someone else define perfect, I was mad and blaming that person but in fact they didn’t do anything wrong by talking about this “perfect” baby, it was ME I was the one sitting there letting Satan define perfect. Lincoln is perfect. God knitted Lincoln.
You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Psalm 139:13
It doesn’t emotionally seem to get easier accepting that Lincolns skin is not soft.
Ruthie our 3 year old daughter insists that we tickle her to sleep. I fight back tears as I sing to her and feel her soft skin, it’s so soft.
Lincoln has the most beautiful eyes.
Lincoln smile will melt you.
Lincolns laugh is contagious.
Lincoln’s spirit is soft.
If you haven’t got to spend at least an hour with Lincoln you should really try and spend some time with him.
Joy- a feeling of great pleasure and happiness.
It’s been 3 months since I updated you. I know you probably see the little smiles and laughs on Facebook but a lot has happened behind the scenes of Facebook.
I’ve been reading this book called One Thousand Gifts and Ann Voskamp writes about the Greek word eucharisto- he gives thanks.
She writes about giving thanks to the little things like “clean sheets smelling like wind.” And it has really changed my perspective on the everyday things that I hardly noticed. I started to think about them and I found myself constantly thanking God, and it brings joy to my heart.
There are a ton of you that we want to thank.
But first here is a part from One Thousand Gifts that really spoke truth to me.
“I name gifts and go back to the Garden and God in the beginning who first speaks a name and lets what is come into existence. This naming is how the first emptiness of space fills: the naming of light and land and sky. The first man’s first task is to name. Adam completes creation with his maker through the act of naming creatures, releasing the land from chaos, from the teeming, indefinable mass.” “Naming offers the gift of recognition. When I name moments- string out laundry and name-pray, thank you, Lord for the bedsheets in billowing winds, for fluff of sparrow landing on line, sun winter warm, and one last leaf still hanging on the orchard- I am Adam and I discover my meaning and Gods, and to name is to learn the language of paradise.”
The micro silk bath-(the tub I wrote about in my last blog)Thank you Lord for the millions of bubbles that tickle Lincoln’s skin and gives him relief.
My heart is heavy in love for Michelle; she is an old soul with a generous God loving heart. She knocked on our door as I was crying in Adams arms for relief for baby Lincoln. She embraced us with a hug and told us her and her husband would be purchasing the tub for Lincoln. Overwhelmed-oh God, all that you are is so overwhelming.
Our home- Thank you lord for surprises. We moved into this home right after I found out I was pregnant with Lincoln. The basement included a full sized bathroom- its HUGE, like the size of a bedroom. We laughed at all the space and put some random stuff in there. Well when Lincoln was born and we found out about the tub we realized that the space had all been there for a reason, for Lincoln tub. As Adam was doing the plumbing he found a stack of tile under the stairs that the previous owners didn’t use, just the right amount for the design of the surrounding. Our back patio has a covered porch with outdoor ceiling fans, Lincoln can enjoy summer nights with us without getting overheated. God really knows what he has in plan for every aspect of our lives.
Breastmilk Thank you Lord for the intricate design of the body to provide the perfect nutrients through breastmilk.
Imagine nursing your babe and you feel like he is never hungry. Then an almost stranger offering her hard earned pumped milk to your baby that is failing to thrive because his body is working way to hard and he can’t catch up to the amount of calories that he needs. Well let me introduce you to Sweet Maggie, she has donated Lincoln more than 1000oz of breastmilk. He still needs to supplement with formula- with ichthyosis your constantly making skin which translates to burning a ton of calories. Without the extra milk that she has donated we would just have him on formula and the feedings that I do throughout the day- he is having a hard time just taking formula. Thank you Maggie you have relieved me from a lot of tears and stress trying to provide for Lincoln.
Humidity- thank you Lord for reminding us that you are in complete control of the weather. There’s been a lot of rain this summer. Adam and I laugh that God knew Lincoln was having a rough day so he brought the rain to us.
Community- Thank you Lord for your spirit in the hearts of our community. The carbon valley newspaper The Consumer Report is done by a God loving woman named Kelly. She has a great way of bringing Gods glory through her newspaper, and Glory did she bring. If you haven’t seen Lincolns article yet you can read it here on page 5 http://issuu.com/consumerreport/docs/cvcr5_15_5_1. She updated the community on what was happening with Lincoln, we still believe that wherever Lincoln may take us, then we will follow God’s plan for our future. We will be visiting Florida in a couple weeks to see how he does in the humidity, we will be meeting with a real estate agent to talk about the area and see some houses in case that is where our will be in the future. The trip wouldn’t be possible without the raising of the money and the donated property to stay at. Adam was also able to buy all the material to build the surroundings of the drop in tub. All the cards we received were so heartfelt and we read each one deeply, I have them saved for Lincoln to read one day, goodness that boy is loved.
Speaking about community- like every topic there is a Facebook page for it, like ichthyosis!! I have met some wonderful people that have lifted me up when the days are just rough. I’m able to ask questions and get advice on topics. I met a friend name Rose, her little raylen is 2 weeks older with Lincoln and we suspect they have the same type of ichthyosis!!! You can read her blog here raylensjourney.wordpress.com and donate to their gofund me in hopes of raising enough for the micro silk tub, it has done wonders for linc and I pray Raylen will soon experience the relief. Oh and they are going to be in Florida the same week we are!!!! So excited to meet them face to face!
ZipadeeZip- Lord I thank you for comfort. I was watching reruns of Shark Tank and this product caught my attention and I knew I had to find Lincoln one! I searched and found him two at a garage sale. I was so excited I emailed the company in hopes of finding a coupon so I could order some. I found more than just a coupon, I found a Believer who owns the company and wrote me back personally.
My original email went like this:
“After I used the zipadeezip he is now stretching his legs and sleeping better! With the skin condition it is hard for him to regulate his temperature and he gets overheated very quickly- he makes skin every 12 hours as we make skin every 21 days- so he burns a ton of calories causing his body to heat up! Because of the extra skin always coming he develops scales that then itch, with the zipadeezip he’s not able to itch his skin, which is great because when he itches he starts to bleed!! with the zipadeezip I put the thick layer of Vaseline on him then his diaper and put him to bed, I’m never wondering if he’s too hot or too cold because of the light fabric always covering him and I’m not worried about him bleeding from itching-if he gets a cut it increases his risk for infection! I just wanted to say thank you for making such a great product!! If you happen to have any coupons you could send our way that would be fabulous! I have been spreading your product all over to the ichthyosis.
Stephanie the owner then wrote back with such kind heartfelt words, and quite frankly I was having a hard day and she lifted me up and the right moment.
“Thank you for being such a beautiful and strong Momma who loves this little child so well.
I also can’t tell you how much joy I am filled with knowing that Lincoln and you have been given this comfort through the Zippy. We are truly grateful to God for this little business and are so happy that it’s been able to help other babies and parents get some sleep too 😉 You and your little one are certainly an example that this business can be way more than just selling slumber sacks. I’m thrilled to know that you can find comfort that your little one is safe and sound when in his Zippy!
God is good and we may never understand the things he does while we are here on earth. But, we can rest-assured knowing that one day we will see him face to face and all will be revealed.
I wish only the best for you and your sweet family. May God bless you dearly and richly!”
Nana and Papa- Thank you Lord for nanas heart and papas hands. As you may know we have 2 other babes. They are a LOT of work, nana has spent so much time tending to them as I go to and from doctor appointments with Lincoln and she also finds time to spend one on one time with them, I adore her. Papa has spent hours helping Adam with the process of getting the tub set. He helped with the Plumbing and Tile.
Grandma- Thank you Lord for time. My mom had nothing going on and decided to come help us for a weekend, well a weekend turned into months, and she has slowly moved in. She is such a blessing to us; she is so selfless and cares for Lincoln so well. I got to spend a lot of time with Z and Ru this summer while she sat at home tending to Lincolns needs. Thank you mom for being a part of this journey. You and Lincoln sure do have a beautiful bond.
Mike- Thank you lord for generosity. We needed electrical done for the micro silk tub in the bathroom. He came over and did the electrical free of charge.
Thank you again everyone who donated to our Go Fund me page. It has brought us so much comfort in knowing we can order Lincoln Vaseline, special clothes, light blankets and all the different ointments we need. We have made a new go fund me page with some updates and new goal. We really appreciate everything you all do for us. http://www.gofundme.com/lovinglincoln
Gratitude bestows reverence, allowing us to encounter everyday epiphanies, those transcendent moments of awe that change forever how we experience life and the world. Sara Be Breathnach
A little update on Lincoln-
He is obsessed with his brother and sister. We recently went to the butterfly pavilion and I couldn’t help but smile as we stood in the humidity and watched the butterflies all around us. Humidity is excellent for Lincolns skin, and butterflies represent Ichthyosis. Here’s a pic of me and the kiddo all ready to go in!
He went under and got his ears cleaned, the ENT said there was a ton of ear wax mixed with skin and it basically clogs his ear path. He will go in every 8 weeks to get them cleaned and he recommends Lincoln being put under once a year until he is 4 or so to do a thorough cleaning. As he was under they also did a blood test for genetics. They tested to see if he had X linked ichthyosis- which means he got the gene from me that caused the ichthyosis- that came back negative/normal.
He went in on Aug 25 to get an 18 gene panel done. Hopefully we will find out soon what type he has. Some people have asked what the point of knowing is. Well we can help his future depending on the type with his care. If it is in fact from Adam and I and not mutated on its own then there is a chance that Zion and Ruthie and other family members can be carriers.
His skin is doing much better since the bath tub. The longer he sits in the tub the more skin basically just wipes off. His head has been super itchy so we have been putting beeswax from Adams cousin Jed’s Bees on his head!! Thank you Jed and Chelsea it has been working wonders!
he has really come a long way since the NICU!
An open or closed door as we visit Florida.
Healing for Lincoln.
Prayer for the other two kiddos as this is still and adjustment to them.
Adam recently got in a car accident- prayer for speedy recovery and the insurance company to work quickly.
Continued strength to get through the long days.
Comfort for Lincoln.