Living with a chronic illness that causes severe muscle and joint pain, exhaustion, dizziness, and weakness (especially when it is not being correctly treated) can make being the kind of mom I want to be difficult.  There are days when all I want to do is sit on the couch, unmoving, until I can reasonably go to bed again.  I have a two year old that has no off button, so that’s not an option.

I waited for so long to be a mother, I struggled and prayed, I filled nights with weeping… When I learned that Isaac was on his way my heart was overjoyed…

I’ll admit to you that sometimes I feel horribly cheated.  Cheated that God allowed me to wait and suffer for ten years for a child, and at the very threshold of motherhood He allowed my body to betray me in a way that makes it almost impossible for me to be the mother I so desperately wanted to be for all of those years.

I know God has a plan, I know beyond a shadow of a doubt that He has a plan for my life… I’ll be the very first to admit that I have no idea what the silver lining is in all of this.  But I know there must be, because my God is ever faithful. 

I heard a song today that I haven’t listened to since the first months of Isaac’s life.  It meant something so different to me then… now it has a more profound impact on my heart.  Because, no matter how sick and tired I am, no matter how short my fuse, no matter how badly I just want to go back to bed… I can’t.  And my beautiful, smart, funny, amazing, miracle of a son is the reason.

No matter how tired I am I can not help but rejoice.

Me by Plumb

I haven’t had a chance to sleep
And when I wake, I wake with your dreams
I guess, my pillow holds some kind of key
To your peace, your peace

Me, I wouldn’t trade your love
For all the candy in this great big world
Me, I feel so crazy blessed and oh, so lucky
To be the place you go when you need to feel safe
When you need a kiss, it’s me

I haven’t showered and I try to eat
But all your tears, oh, they needed me
I need some time, some time to think
Then I hear you, what you need is

Me, I wouldn’t trade your love
For all the candy in this great big world
Me, I feel so crazy blessed and oh, so lucky
To be the place you go, I’ll wash your face
To make room for all the kisses of tomorrow
And everyday that I get to be here with you is sweet

Me, I wouldn’t trade your love
For all the candy in this great big world
Me, I feel so crazy blessed and oh, so lucky
To be the place you go when you need to feel safe
When you need a kiss, oh, don’t be afraid
‘Cause what you’ll have is me


11 thoughts on “Me

  1. Courtney, I am amazed at how much we share. I had to wait till I was 32 to marry my love. I did not understandwhy all my friends had found love, married and had children. It was my hearts desire. I did not struggle with having a child and at 34 I was pregnant. I did get put on bed rest at 12 weeks because I came close to losing him. After he arrived I expected to feel better and I did, but not for long. I was working again as a nurse, trying to balance being a new mother with a job and a husband who was gone far to much (gene worked 24hrs off 48, but her also worked a second job that had full time hours, we had medical bills from my pregnsncy and I had not worked for 11 months) and my health kept going down hill. It took years and years, doctor upon doctor, ER visit on top of ER visit to find out how sick I was. By this time my joints were so swollen I could hardly walk, my fatigue was crippling and my lungs were so bad that I had to sleep in a recliner sitting up. All the while chasing a very, very active toddler. I had help when I got so bad, my mother in law would keep my boy often for me, but I felt robbed. I wanted to do all those things that young couples did with their child. I wanted to run and play at the park, take bike rides and play ball in the field, I wanted to be the homeroom mom who was known for her cupcakes and always going on field trips, but this was not the story I was given. When I got my most I’ll and had to have chemo to knock down my immune system I got a wicked, wicked infection. I nearly died, I also spent 7 weeks in isolation. This meant the only way to see my child was to look out of the hospital window at him outside. The only way I could talk was by a telephone. After another year of hospital stays, medications and weakness I was home. This did not bring my child home though, oh they would bring him to visit, but I was in a wheelchair and having to learn how to walk again. It took far too long to relearn what I could and could not do. Oh we had times, rare times when we were together as a family, but this was not the way I pictured my life. My husband was tired and worn from working all these hours and dealing with a very I’ll wife, my child lived at Mamaw’s more then his own home and I was not sure we would ever feel normal. What I can tell you is this, you are stronger than you think you are, your child will be OK. Mine has learned compassion and he is keenly aware of others limitations and needs, there are lessons to be learned from weakness. Your marriage can withstand long hours apart, little rest, changes in body and physical abilities. Keep talking, keep trusting. I have learned that some things are just not fair! My illness has cost many physical pains, and it cost me having a normal childhood with my son, not to mention staggering medical bills, but it also cost me my career. I was a certified intensive care nurse, I worked ICU/CCU for years. I loved critical care and trauma. Besides being a nurse I was a paramedic. I LOVED what I did and I was good at it. With lupus the worst thing is to be around infection. It was impossible to avoid it in my career. Being on immunosuppressive drugs meant I have no immune system to fight anything. My job became a danger to my life. So sweet girl, I can understand the feelings you are having about being cheated. They are real and they can really make you hurt for the life you had, or dreamed of having. But I can tell you that you can find rest in God and His perfect plan for your life. There are going to be things we don’t understand until we see Jesus, and you and I share some of the same questions. I can promise that there will be long, tough, exhaustive days, but there will also be a time of rest. Be easy on yourself. When Issac rests, you rest. The house does not need to be perfect, but you will learn to balance what is important. I know you will be apart from Ryan for 13 months, let your family help you through this time. Just know that others can help and its OK. Please know that you are in my thoughts and in my prayers. Right now this is what I can do to help your situation. Please know that I understand, and that I am thinking about you!!!

  2. I waited patiently 9 years for a sibling. Then he came and I tried to be a good sister but failed many, many times. In the end I doubt I really was a good sister. Then he was taken away from me far too young. I definitely feel angry and cheated. But I don’t believe anymore that there is some kind of “plan”. There isn’t some God above manipulating us all with some kind of plan. If God is there, he’s busy with other things. That’s what I realized after I lost my precious brother. Now I’m sure that you are a better mom than you give yourself credit for. And if you ask your child when he grows up what kind of mother you were, he will know that you did the best you could with the physical limitations you had. Time will bring understanding, and a child’s love is large and deep – don’t know if it’s like a parent because I’m not one – but it will forgive more little foibles than I think parents realize. Thanks for sharing your story.

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