Category: From the Heart Series

I asked my dear friend and blog reader, Jamie, to share with us about the trials her family has been through.  We have been blessed thus far to be a mom to two fairly healthy kids.  I have much to learn from the strength Jamie has gained through the trials that God has seen them through with her sweet boy.  I so appreciate Jamie’s openness and honesty about how God has touched their lives, and taught her to wait for His timing while begging for His healing of her son’s precious little body.  Mamas, read this one with some Kleenex nearby, and if you are a mom whose child has been through medical trials, please know that you are not alone in waiting for God’s healing.  Jamie, I love you so much sweet friend.  Thank you so much for your openness and for being willing to share, knowing that you may help other Mamas whose hearts are breaking for their babies.  And now, without further ado… here’s Jamie’s Words From the Heart:

Our Family had traveled through a long, hard season of trials. We had been through so much, but our faith had grown. We learned to trust God more, and we appreciated more. I could see the meaning for it all. Surely we were now due for God’s blessings.

I never expected what came next… it was our season of wait.

This was a completely different test, just when I thought I had passed them all. It was an agonizing one; one that I would fail at over and over again. I was at the mercy of time. It felt like the same suffering, day after day, with no end in sight. Just when we thought we found the answer, just when the doctors claimed it was over, the battle continued…

The waiting continued.

“Three different times I begged the Lord to take it away. Each time He said ‘My grace is sufficient for you. My power works best in weakness.'” 2 Corinthians 12:8-9

It was January 2014 and we began to notice our son, Dawson having dirty undies. We thought maybe it was a boy thing, and made sure to help him clean up after going to the bathroom. He was only five, after all. But by March, I was receiving at least one phone call a week to pick him up from school because of the accidents.

[When Dawson was born he did not have a bowel movement in the hospital. He was transferred to the NICU and after several days of testing, was diagnosed with Hirschsprung’s Disease, a genetic disorder where the ganglion cells in the intestine do not form. He had to have a colostomy because he was a preemie and didn’t weigh enough for the corrective surgery. At ten months old, he had the surgery to remove the part of the intestines that wasn’t functioning. The day before his first birthday his colostomy was reversed. He healed perfectly and never had any complications.]

Because of this history we decided to take him to his surgeon. We thought something went wrong, causing leakages. Dawson was taken to the hospital for a Gastrografin enema. The report said the intestines were healthy. He was just very backed up. The surgeon assured us it was normal and not related to his history. The Gastrografin would continue to pull fluid into the intestines and everything would pass. When the blockages were gone, the accidents would stop.

Days later, nothing had changed. The surgeon referred us to the GI doctor Dawson saw as a baby. He was started on Mirilax as xrays still showed blockages. He went three months without any change. In June, I received a call from the GI that the recent xray showed substantial back up; He would have to be admitted to the hospital. They ran an NG tube to his stomach which would pump medicine in to clear him. An xray was taken to verify placement. The staff was baffeled. His blockages were so bad that he should have been vomiting everything he ate; they should have ruptured; he should have developed toxicity. But even in our trials, God is faithful. He protected Dawson through it all, and Dawson’s bravery and positive attitude never ceased amazing me.

He was there for over two days and finally had a normal xray. Praise the Lord the blockages were gone! We even had a couple days of clean undies, but then the accidents returned. Dawson had developed megacolon from all of the blockages stretching his intestines. We had to continue the Mirilax, the pull ups, the pads, and of course, the waiting.

And I continued trying to control the situation. I was angry that God wouldn’t fix this. In November we went for a follow up. His GI advised us that if he didnt improve in three months, we would have to consider further, more invasive testing. This was the last thing I wanted him to go through and I was stressed. I gave up hope.

But in the weeks following, something changed. I finally surrendered; I stopped trying to change it. I prayed for God’s will and trusted Him, if that was the road we were meant to travel. I started a daily prayer journal, and I began to let myself hope again.

“But those who hope in the Lord will renew their strength…” Isaiah 40:31

God showed me our minds were not developed to figure out the future. This waiting was a lesson in trust like no other. And all the while I saw a young boy full of unparalelled strength and grace. I had found peace. Regardless of the circumstances, I had a healthy boy and I placed him completely in The Father’s hands.

Then it happened; God showed me a reason…

My husband’s grandma fell and fractured her hip. After surgery the nurses said she would call out Dawson’s name in her sleep. She would yell, “Okay Dawson, I will do this with you.” Grandma had taken everything he had been through as motivation. It gave her the strength to recover. She told us, “If he can handle all that, I can do this.” She drew her strength from my darling young man, and I could not have been prouder. If that was the reason she could recover, it was all worth it. I didn’t know when his body would heal, but at least I knew all this had purpose.

After Christmas, I heard that still, small voice.

I felt God urging me to call the doctor. I explained to her that Dawson was showing no signs of improvement and I felt it was time to move on. January of this year we went to the GI. She had spoken about his case with the specialists that would perform the testing. Low and behold, they first wanted to make sure it wasn’t related to the Hirschsprung’s after all. They explained that some patients will develop a spasm in the colon, even years after surgery, that can be causing the accidents. It may have even caused the blockages in the first place. She stopped the Mirilax and prescribed an anti-spasm medication. We also scheduled a biopsy to make sure there was no residual Hirschsprung’s.

That was a Friday. Saturday morning Dawson took his first pill. Saturday after lunch was his last accident. Just like that, it was over. In God’s perfect timing, not my own.

His biopsy was a couple of weeks later and everything was normal. It was unbelievable, and I found God still teaching me to trust Him that Dawson really was okay.

“God is keeping a careful watch over us and the future. The day is coming when you will have it all, Life healed and whole.” 1 Peter 1:5.

This was our season of wait, and God taught us how to wait well. I had no end in sight, but when I was no longer looking for it, God ended it. He taught me to fully rely on Him. Our Father loves Dawson more than I ever can, and he is safe in His loving hands.

(If you have any questions about this condition or children’s constipation, I’d be happy to share my advice with you. [Of course, I’m not a doctor!]. We keep Dawson on a very high fiber, whole grain diet. His dairy is limited but not eliminated. Whole foods are best. He takes apple cider vinegar daily, fiber supplements, as well as his Levsin. I also try to implement coconut oil daily, and lots of fluids!)

Jamie and her husband live in Florida.  They have two beautiful children – Dawson and Peyton.

Being a mom is challenging.  Being a mom to more than one child is more of a challenge.  But if you’re living life with an autoimmune disease, being a mom is a blessing and can also be a curse.  Wikipedia has some great (research backed) information about autoimmune diseases, which are interestingly among the top ten leading causes of death in women under age 65.  There are over 80 different kinds of autoimmune diseases, with varying results for the body.

I have Rheumatoid Arthritis.  But in the process of getting that diagnosis, I heard several doctors mention several different possibilities – most that were far worse in their long-term affect on the body.  Since receiving my diagnosis, I have met three moms in particular that live with a couple of those other options that I didn’t end up having, but heard in the diagnosis process.  All three of them had some things in common that I strive to live out in my daily life.  I’m going to share them with you here so that if you are a mom who has recently been diagnosed and are learning to live again, or if you’ve been living with a diagnosis and you’ve recently become a mom, you can hopefully gain some knowledge from the experience that each of us has to share.

(Props to Chelle, Haley, and Heather right now – and thank you each for how much you taught me… without even knowing it!)

Be Real.

Your kids need to know that sometimes Mommy just hurts.  (Note: Monitor how much you complain – you don’t want your child to become a chronic pain complainer… esp if your autoimmune disease is one that can be hereditary – you need to know if your child really is experiencing pain.)  But don’t hesitate to explain why we can’t do something right now.  Tell them how you feel.  Don’t just say “I can’t carry you right now.”  Tell them that when you’re in a flair, it’s very painful to take each step, and you need to make sure to not put any extra weight on your feet today.  Suggest another activity instead.  If you think your child is just craving your attention, suggest to snuggle together with some books on the couch, or watch their favorite tv show with them, etc.

Explain so they don’t complain.

If you’ve got a doctor or physical therapy appointment and the kids have to go too, explain what the doctor is going to do for you today.  “Because Mommy has this disease, it means that Mommy needs to visit xyz clinic to get help to feel better and be a stronger Mommy.  (i.e.: I’m a better Mommy for you when I feel good and confident with my body and its abilities.)  It’s important that you help me through this appointment to help me be a better Mommy.  My body wants to be able to help you, but I need to get some help from xyz doctor in order for that to happen.”  Doing this doesn’t mean they won’t complain.  Because they are kids.  But if you are working to instill a caring heart, understanding will come soon enough, and with it, more patience on their part.  (Still bring along your entire bag of tricks to keep them occupied – they are, after all, human children!)

Use every moment as a teaching moment.

I’ve heard Haley talk about how she has had to train her children to freeze and listen to her voice – life in a wheelchair with MS restricts her abilities to run after a child who might run into the street, etc.  But isn’t that a positive thing?  They have learned from an early age the importance of listening.

Chelle showed her son her X-rays when her leg broke due to a fall caused by her Lupus, and he began to take interest in the human body in a whole new way because it was no longer just in books and online – he could truly see inside his Mommy’s leg… and right there in Kindergarten he began to declare he was going to be a doctor.  Time will tell if he decides to follow that dream, but either way, she took advantage of that teaching moment.

Don’t wallow.  Let your kids live.

It’s SO easy to want to sit on the couch and just feel sorry for yourself.  But something Heather told me when in the middle of her treatments, blood transfusions, surgery to insert a port, and just general illness that comes with her Limes disease has stuck with me.  Her parents-in-law were paying for the whole family to go to Disney World.  And I was basically in shock that they were going.  I mean, seriously, they could have just backed out gracefully and everyone would have understood.  But Heather told me when I asked “so why are you going?”… “Because I want my kids to live.  Their lives don’t revolve around my pain.”  Wow.  That is something that I strive to remember every day.  She had to hang out at the hotel often, or find a place to sit down frequently, but her kids got to enjoy time with their beloved cousins and spend time at Disney World because she was willing to not wallow in her own pain and discomfort so they could live a little.

Cherish the good days.

One of the real curses of Rheumatoid Arthritis is that it comes and goes.  You can be fine and perfectly normal for several months, and then one really good storm front can set you off on a flair that lasts for days or even weeks.  Or an illness can.  Or a change in estrogen levels can.  Many autoimmune diseases are similar in this.  It’s easy to get lulled to sleep until all of a sudden your disease flairs up and reminds you just how weak you are.  So cherish the good days.  When you feel great, REALIZE it!   And appreciate it.  Celebrate life just by being active when you can be!   Run and play with your kids outside.  Roll in the grass.  Pack a picnic and go to the park to sit on a blanket with your legs crossed.  And help them to realize to cherish it as well – verbalize how good you feel today and what a blessing it is that you aren’t in pain right now so you can easily do all these fun things.

Learn to let go.

You aren’t in control.  And this is never more clear than in the middle of an autoimmune crisis.  Autoimmune diseases are not given to the faint of heart – God certainly provides the strength necessary to conquer every day.  But He can also use them to make a totally self-reliant person let go… give in… and accept help.  Whether someone offers to bring a meal to your family, or offers to keep your kids during a dr. appointment, DO NOT EVER SAY NO.  Learn to let go of the control that you feel you need to have over your life and your circumstances.  God provides people to help you get through the tough times – ACCEPT THEIR HELP WITH GRATITUDE!

Look for the JOY!

One of the songs on a kids worship cd that I recently purchased for Becca is called “I Choose Joy.”  And in that song, Justin Graves so aptly sings “I choose joy – in the good times and the bad.  I choose joy – when I’m happy or I’m sad.  Joy is not a feeling, it’s living your life glad.  I choose J-O-Y, I choose joy.”  Mama, let me tell you how very hard it is to choose joy.  But choosing joy is looking for the little tiny moments.  On a day when you are overwhelmed with pain and you’ve had to walk the entire grocery store with two kids and a full cart, it’s hard to choose joy.  It really is.  And in those moments, I pray that God will send you a friend like my friend Naomi, who will randomly send you a couple pictures of her kids playing outside and tell you that she has found peace, and encourage you to find it as well.  Because in that moment when I received that message last week, God hit my heart with an arrow, and a few minutes later that arrow had sent it’s love all through my whole being.  I looked down at Becca as we created an awesome train track, and my voice caught in my throat.  I realized how blessed I am.  I found my peace.  I found my joy.  Right there in that moment with her.  Always look for the joy.  Always choose joy.

Don’t forget to LAUGH in the sunshine!

It goes right along with finding joy, and choosing joy… but truly, laughter is the best medicine, and more people are Vitamin D deficient than any other vitamin.  Whether you are in a wheelchair, have hypersensitive skin that can burn easily, have chronic asthma and horrible allergies, NO MATTER WHAT plagues you daily, GET OUTSIDE and LAUGH in the SUNSHINE!  Your kids need to see you having fun.  Chelle often talked about (away from Tyler’s presence) how hard it was to be there for his soccer games, but how she would never want to be anywhere else.  She had to wear a large hat and super strong sunscreen, but she was there.  She wanted him to know how much she loved him and supported him, and she said she loved the moments between games when he would come to her lawn chair and excitedly tell her “did you see ___?” and “I did ____!”  She said that she loved laughing with him, and seeing him laughing with his friends.  Even when she had her broken leg, she was there for his games – rain or shine.  She always said they had such awesome bonding moments outside together.

And last, but not least…

Be honest with your spouse and ask for help.

There will be times when you want to hide your pain.  There are times that I hide mine.  I don’t want him to think I’m whining and complaining all the time.  But you need to be honest with him.  You need to tell him when you are having severe pain, and you need to ask him to help with things that you know you just absolutely can’t do right now.  It is hard to give up and give in, but remember that when it comes to your health, and the health of your marriage, it’s important to keep honesty central in your relationship.  God has given you this man as a helpmate for a reason, and don’t ever forget to be honest with him.  Keep this in mind – if you aren’t telling him what’s going on, he can’t read your mind, but he can read your body language… and he might read it all wrong and think something far deeper is going on when really it’s just surface pain and you not being willing to ask for help with household chores.  If you are overwhelmed and you need some time away from the kids, TELL HIM THAT!  The rest is up to him.  And hopefully he will support you and provide that time that you need.  I have learned from Haley that it’s important to tell Cody when I need a break – just like she talks to her hubby and tells him when she needs time away.  And it’s amazing how much better I feel and how much stronger our family is when I’ve had a little time away by myself!

So if you are struggling with an autoimmune disease and trying to figure out how to juggle that and a family, hang in there.  And know that you aren’t alone.  Build up a support system around yourself of other moms who have autoimmune diseases so that you have someone to contact on a bad day who truly understands, and also, build up a support system around yourself of folks who can help you when you need help.  Remember that there’s always a Mommy who is hurting worse than you are today.  Pray for her.  Even if you don’t know her.  And hang in there, Mommy.  You can do this.  You are stronger than you think.

 

Joshua 1:9:

  “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”