Thursday, March 31, 2016

God speaks....

For those who don't feel like God speaks to them I have to say that I used to feel the same way (heck, sometimes I still do). But I'm learning (slowly) that whenever I feel this way it is almost always because I'm doing my own thing...not reading His word regularly, being more focused on Facebook, or the kids' schedule or planning meals or grocery lists or running errands than I am with spending some time in God's word. When I'm just letting life happen like this and then happen to open the Bible or read a devotion sometimes it just feels/felt like I am/was reading a foreign language or just completing a task or chore for the day. 

Last night I begged God for peace and calm. Instead of watching tv before bed, doing tons of research or wasting hours on Facebook, I opened my Bible, read a little (not a lot...I didn't spend hours on it), wrote in my prayer journal and then laid down and turned off the lights.  And for the first night in weeks I was able to get more than 3-4 hours of sleep. I've been waking up several times a night for the past few weeks and would be up for hours at a time, unable to go back to sleep. Hashing through not only this hair issue that we're dealing with right now but all the things I did wrong or could have done better or spoken more gently or acted with more kindness. Am I feeding the kids the right diet? Why did I snap when she wouldn't get in her car seat? Why did I feel like I needed to nag the Italian about whatever? etc, etc, etc...So the 7 hours of sleep I got last night was a game changer for sure. 

After I got up this morning, I opened my Jesus Calling devotional to today's date and felt like God had written it himself just for me. This is not the first time I've felt this way. Several times a week I wonder how in the world He knew that I would need to read this on this particular day. 

I scribble all over my book and purposely chose the version withOUT the scriptures written in it so that I  have to look them up in my own Bible. I then write them in my book because I personally learn better by writing than by reading. My mind wanders when I read but when I write it down I'm much more focused. 

Some things that it said today that really struck me were: 

"Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only though your trust in Me. Understanding will fail you, but trust will keep you close to Me. 

Thank Me for the gift of My Peace, a gift of such immense proportions that you cannot fathom its depth or breadth. When I appeared to My disciples after the resurrection, it was Peace that I communicated first of all. I knew this was their deepest need: to calm their fears and clear their minds. I also speak Peace to you, for I know your anxious thoughts.... 

...I designed you to dwell in Peace all day, every day. Draw near to Me: receive my Peace."

What the what??? Was this a gift from God or what? I had to smile as soon as I read it. He speaks when I am ready and AVAILABLE to listen. He is God, not a fairy with a magic wand. His desire is for us to WANT to draw near to Him and when we do amazing things happen. 


As a sidenote regarding Nicolette, her silk pillowcase (I call it her princess pillowcase) came in yesterday and she slept on it for the first time last night. I anxiously went to get her out of bed this morning and not a single lost hair on it! HALLELUJAH!!!! After several days of seeing so much hair on the pillowcase that sweet gift of not seeing any shed hair was a huge relief to this worried mama. Thank you God for that! 

Wednesday, March 30, 2016

Rough morning

So today got off to a rough start. When Nicolette woke up this morning I went to go squeeze her and hug her and of course saw more little hairs on the pillow case. My anxiety started to rise. Her hair was a mess so I started combing it GENTLY (I'm always so gentle with the comb now out of fear of pulling hair out of her head) and I could not believe how much hair was coming out. I had to just stop combing even though her hair was a crazy mess and turn away from her quickly to dry the tears that were starting to quickly puddle in my eyes. I asked her to go pick out a dress and told her we were going to go take a bath and wash her hair in mommy's tub downstairs. We had done an oil treatment last night so needed to wash the oils out and Walker was still asleep so I didn't want to bother him by running the bath right next to his room. Washing Nicolette's sweet hair gently seemed to calm me down and if more hair fell out I couldn't see it in the tub so I started to settle myself a little bit. Maybe this sudden shedding is just the old making way for new beautiful, healthy strands...that's my hope and prayer anyway.

After breakfast we hopped in the car to head to my weekly Bible study. I am so, so SO thankful for this amazing group. We're tackling a study on humility right now and Lord have mercy is this speaking to me. (sidenote, if you're in the Charlotte area and are looking for a women's bible study group this is a great one to join. I can share more info with you...we'll be wrapping up in a few weeks but then start back again in August).

Anyway at the end of the study our leader always opens the floor for prayer requests and I felt like I needed to speak up to share and ask for prayers, not only for Nicolette but for myself for some peace regarding this issue and also for the Italian. I have a hard time talking about this with him because I know that the fear of the possibility hurts his heart so much so I just try to pretend like it's all ok and keep my anxiety to myself. Probably not the healthiest way to carry on but it's just what I do. Well, about a grand total of 3 words into my prayer request the waterworks started. This is so hard to talk about without crying and it's all just anxiety and worry. I am so frustrated with myself for acting and feeling like this is already confirmed. I can say all day long that I refuse to let this steal my joy but gosh darn it if I haven't already let it steal my joy...for days now. And I'm ticked about that.

Need. To. Snap. Out. Of. It...NOW!!!!

One thing that one of the women in our study said was in relation to Stephen and how in the midst of being stoned to death it was as if he was so full of the Holy Spirit that he wasn't even feeling the pain of the stones. He could only focus on seeing Jesus and asking for forgiveness for those who were literally killing him. She said that many times we can become so consumed with our circumstances that we aren't able to see Jesus. In that case the opposite must also be true that it is possible to be so consumed with Jesus that we aren't aware of our circumstances. OUCH. I've definitely been focusing 95% of my time and energy on my circumstances and maybe 5% on my daily devotions, lessons and prayer time. Talk about conviction and a reality check. Need to turn that around STAT.

I'm trying to snap out of this "woe is me" nonsense and focus on gratitude for all that we have. A year ago I would have loved for Nicolette to have as much hair as she has now, so thank you God for that gift! I have TWO amazing, spirited, beautiful, HEALTHY children. I'm blessed to spend almost all of their waking hours with them. I've kissed their faces and tucked them into bed almost every single night of their lives. There was a point in time where I thought we may never have any children and now we have TWO. And they're incredible. Even better than I had dreamed up when I was praying for a baby so many years ago. Gosh they make my heart swell. Neither of them came about the way that I thought they would. They both arrived in God's perfect time and I have to believe that the solution for this "issue" will also arrive in God's time.

And I am SO thankful for the slew of friends and family who have reached out by phone, text, email, Facebook, etc. to offer support and encouragement. It REALLY means more to me than you all will ever truly know. Time is a precious gift and none of us have enough of it so for those who spent a couple of minutes of their precious time on me, it certainly did not go unnoticed or unappreciated. And I'm really grateful that I wasn't judged as I feared that I may be for voicing my honest fears and anxieties about this. I know that we could be facing much bigger obstacles and trust me I don't want to  compare this in the least with anyone else's trials as I know that things could be so so so much worse. I am truly grateful for the health of my family and pray for the health of all of my friends and their families as well. For those who are experiencing very scary, life threatening issues I say a special prayer for healing and protection. Even if we haven't spoken in 20 years, I pray for the health and healing of you and your family.

We have Nicolette's bloodwork appointment on Friday. I'm going to ask to make sure that they run tests for total iron including hematocrit, tranferritin saturation and ferretin, thyroid function, Immunoglobulins and testing for Celiac as apparently all have been linked to hair loss and/or delayed hair growth. I've never had to ask a doctor for specific tests and I don't like to come across as if I know more than any doctor but I need to be an advocate for my girl and for my own peace of mind I need to know that the things that I've read about that can play a role in this are all tested for and ruled out. Hoping that they're receptive and don't look at me like I'm a total nut job. I have no idea how long it will take to get results. From what I'm reading if it is a nutritional deficiency like Iron then iron supplementation may help. If there is a thyroid issue then we would probably be referred to an endocrinologist and if celiac shows up then we'll obviously have to make some serious dietary changes. If nothing shows up some recommend eliminating gluten anyway as many of us are actually sensitive to gluten (not allergic, but sensitive) and that sensitivity and inflammation can present itself in many ways. And it's also been suggested to ask about malabsorption which may require a stool sample to test properly. We'll see. I'm trying to hold off on looking into pediatric dermatologists until I know that that is definitely a route that we need to pursue but may just ask the pediatrician if she has some that she would recommend who may have had experience with situations like ours.

In the midst of all this I don't want anyone to think that I've forgotten about my sweet little baby boy. I am amazed by our little guy Walker. He's such a character and full of spirit and personality. He's talking in some complete sentences now so we can have little conversations and I love it. He is so proud of himself when I understand him and we can chat back and forth. He absolutely loves to be given a job or task to do. Putting things in the trash when I ask him or dirty clothes in the laundry basket or getting his shoes out or putting them away are some of his favorites. He is SUPER opinionated though and has a flair for the dramatic. Pretty much any time he doesn't get his way he will toss himself to the ground and wail. He's heavy, he's stocky and he's STRONG so sometimes picking him up when he's pitching said fit can be challenging to say the least. His eye teeth have just broken through this week...all 4 of them! I'm trying to savor the last moments of his sweet gaping smile as I know it will be forever gone before I know it. The boy is OBSESSED with cars, trucks and tractors and with balls. Daddy bought a new tractor last week and his new favorite thing is going into the garage to look at it and climb up and sit on it. He is definitely an outdoorsman and would play outside 24 hours a day if I would let him. This usually leads to another opportunity for one of Walker's aforementioned "fits". These tantrums occur pretty much anytime I try to make him come inside or get off the tractor, or get in his carseat (because if we go into the garage he assumes that we're surely going to play outside and is always royally ticked when he finds out that we're just going to get in the carseat), or try to help him buckle his car seat or high chair strap, or stop playing with a toy to sit down for dinner, or stay out of daddy's office while he's working, there are plenty of opportunities for him to practice his tantrum throwing skills. Thankfully they're short lived and usually subside in less than a minute. After months and months of fearing that he would surely grow up illiterate because the child REFUSED to sit and let us read more than 1 page of a book to him he has turned into quite the bookworm. Requesting 8, 9 or 10 books at night before bed and sitting in my lap for 20-30 minutes at a time to read the same books over and over again. He loves golf and watching for the golfers from our windows. He'll shout "GOLF" whenever he sees one. He also loves basketball and when it's on TV he shouts "Shoot! Shoot!" He's not much of a snuggler, (sadly never has been) so when he walks up to me and holds his little arms up, I drop whatever I'm doing and pick him up and squeeze him and love on him. It usually only lasts for a few seconds and then he's squirming and wiggling and ready to check something else out. He is such a handsome little guy and I just hope that I can make sure he knows every second of every day how much he is loved. Nicolette is really amazing with him and I can tell that he absolutely adores her. He has to play "husband" all the time and the sweet kid just goes along with it, holding her hand following wherever she leads him. If I ever go in to get him in the mornings or from nap and Nicolette isn't up yet or isn't with me he immediately calls out for her. He wants her around all the time. Such a sweet little bond they're developing and I hope it only gets better and better.

"Rejoice in HOPE, be PATIENT in tribulations, be CONSTANT in PRAYER" Romans 12:12

Monday, March 28, 2016

Sigh...not sure where to start

I don't know why I feel compelled to write about this. I mean it's been over a year since I've even touched this "blog". Life with two littles and several part time jobs has kept me busier than I would ever have imagined but lately my mind has been preoccupied way too much by one thing...Nicolette's dang hair (or lack thereof). I REALLY struggle with writing this. On one hand it feels so superficial to worry about. I have friends who have lost children to cancer, or have children fighting cancer or have children with life threatening allergies. I mean this should NOT be a big deal, but it is. It hurts my heart.

A few months ago after making a comment about Nicolette's sloooow growing hair, a friend mentioned the name of a condition to me called Short Anagen Syndrome. I had previously read about Loose Anagen Syndrome which is a little more common in which case children's hair grows sparsely but falls out easily with no pain. You perform a simple pull test and see how many hairs are lost. Nicolette never had any hairs lost so I knew that LAS didn't seem to be her issue.

Short Anagen Syndrome (SAS), however is a much rarer condition in which a child's hair only grows to a short length and then falls out and new hair regrows. The anagen phase (or growth phase) of hair growth is very short, so the hair never gets to a long length. I looked around at photos of other children with the condition and many of them had hair similar to Nicolette's so I of course grew concerned. This condition is so rare that it is difficult to find a pediatrician or pediatric dermatologist who can properly diagnose the condition and from my reading there really is no line of treatment and little to no chance of improvement throughout their lives so I wasn't sure whether or not pushing for a diagnosis was necessary. After a minor (ok, massive) break down at my weekly Bible Study, I suddenly felt some sense of peace and decided to relax and pursue some natural treatments to see if we saw any progress.

I started Nicolette on a multi vitamin with Biotin, a hair serum made with essential oils, a special shampoo and conditioner and daily scalp massages.  I took "before" pictures of her sweet head and hair and have thoroughly enjoyed our sweet time with her laying in my lap while I play with her hair and her head. I felt like we had seen some improvement, even last month we were walking outside and Nicolette was giggling and laughing saying that she could feel the wind her in hair. It was the first time she'd ever had enough hair to feel that sensation and it made my heart happy watching her giggle about it, so proud of her "long hair". Then that all started to change a couple of weeks ago.

A few weeks ago I noticed while combing her hair after her bath that there were several small hairs in her comb. After a week or so I switched from a fine toothed comb to a wide toothed comb and saw less hair but still would see hairs in the comb. Then this morning while making her bed I noticed several little hairs on her pillow case. Something I had never noticed before. I had read about this from several of the LAS mothers. Many of them even buy silk pillow cases for their daughters to help reduce the friction and late night hair loss and breakage (so guess what I ordered from amazon today?).

Throughout the day today, Nicolette spent most of the day sitting in my lap. Poor thing is having a time with this darn Carolina pollen and is struggling with seasonal allergies so has been more clingy than usual (which is secretly fine with me). As I was running my fingers through her hair I noticed that MANY hairs were EASILY falling out with each stroke. I looked at my shirt and there were little hairs of hers all over where her head had been. My pulse started to race and tears began to well up in my eyes. My little girl has so little hair, how in the world could this all be falling out in my very hands?

I called our pediatrician to request bloodwork. There are some nutritional deficiencies that can lead to hair loss or slow or delayed hair growth so I feel like we should at least get a full panel run to ensure that she doesn't have an iron deficiency or a thyroid issue or something else that we're not aware of. We have an appointment on Friday morning for that.

I wanted to give her little head a week long rest from everything - oils, massaging, shampooing, conditioning, combing...but we played outside today and I had to shampoo and condition her hair to rinse that nasty pollen out. Fortunately there were only a few little hairs that came out while combing tonight which helped to ease a little of my anxiety.

Let me say this, I think Nicolette is one of the most beautiful children I have ever seen in my life (with or without hair). And with her sweet little "do" she looks like a preciously, perfect little pixie which matches her sweet personality. But to hear her ask DAILY when her hair will be as long as Rapunzel's, when she can have a ponytail or a bun like mine, etc., it just breaks my heart and makes me sad. Then I hear other mother's of older children who do have one or both of these diagnosed conditions talking about other little girls not wanting to be friends with their daughters because they "look like boys" because of their short hair in kindergarten and 1st grade or making fun of them in dance classes because they can't wear a ponytail or bun or even worse bullying them in middle and early high school it is SO HARD not to go there mentally and start to worry about and fear something that hasn't even happened for us yet.

This could be nothing, her hair could just be slow growing, maybe this weird recent hair loss is no big deal, maybe I'm making a mountain out of a molehill but I will pray for God to know my anxious thoughts about this so that I don't have to rehash them and dwell on them every hour of every day. This issue has occupied so much mental space in my brain these past few months and I need to find a way to let that go.

The Bible tells us over and over again DO NOT WORRY, FEAR NOT. There are over 365 references in the Bible commanding us not to be afraid, anxious or worried. Worry therefore is a sin and one that I am guilty of daily (ok, hourly.....ok, maybe each minute). I promise I'm working on this, God! Meditating on verse after verse to help bring me back to God, to remind me to live in the moment, appreciate the amazing, beautiful life that I have been given and to trust that he loves my sweet girl even more than I do. So God, I give this child to you. You created her and gave her to me and I admit that I have NO control in this situation and just trust the outcome to you in your timing. You have answered my every prayer and I know you will do the same again. Just help me to have the patience, faith and hope for the outcome. Forgive me for my doubt and distrust of you and please free up this mental space so that I can think of and serve others. In Jesus' name, Amen.

Nicolette age 22 months asking for ponytails. 

November 2015
March 19, 2016

Like I said when I started, I'm not exactly sure why I decided to write and share this. Maybe it's because when I wrote and shared about our struggle with infertility that it finally allowed me to let those feelings out and I could then talk about it without crying all the time from trying to hold it in. Maybe it's because even today I have strangers reach out to me letting me know that they've read about our struggles and how it helped them to find answers or to feel less alone. I don't know. But I feel better having spilled it all here.

Verses for me to remember:

"Do not be anxious about anything but in everything by prayer and supplication with thanksgiving let your requests be made know to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus"
Phillipians 4:6-7

"Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these..."
Matthew 6:25 -34

"Cast all your anxieties on him, because he cares for you"
I Peter 5:7

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble"
Matthew 6:34

"Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him because he cares for you"
I Peter 5:6-7

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid."
John 14:27

"For nothing will be impossible with God"
Luke 1:37

"Cast your burden on the Lord, and he will sustain you..."
Psalm 55:22

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."
Isaiah 41:10

"Let not your hearts be troubled. Believe in God; believe also in me."
John 14:1

"For I know the plans I have for you, declares the Lord, plans to prosper you, not to harm you. Plans to give you hope and a future."
Jeremiah 29:11

"When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid."
Psalm 56:3-4

"May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope."
Romans 15:13

"When the cares of my heart are many, your consolations cheer my soul"
Psalm 94:19

"Now faith is the assurance of things hoped for, the conviction of things not seen"
Hebrews 11:1

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you."
Isaiah 26:3

"He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?"
Romans 8:32

"But if we hope for what we do not see, we wait for it with patience."
Romans 8:25