Therein lies my heavy heart. I don’t know what life looks like in a few years for Isaiah Jane. I know what I want it to become, but I have no guarantees. So instead of planning adventures and vacations, I’m neck-deep in phrases like failure to thrive, global delay, and let’s wait and see. Today feels especially ominous because Isaiah Jane officially welcomes her baby sister to her club at midnight. The clock will strike and Honor Rose still won’t walk. I know she will soon, just like I know they will both gain weight eventually. But I feel like screaming, “I didn’t need this, Lord! I had enough to carry with Isaiah Jane’s diagnosis! What exactly are You trying to teach me?!” Simple plans like going to the park have become a burden. I can’t push two strollers by myself. In the above photo, I’d forgotten one sling at home when we went apple-picking. I have to think ahead of every day, every outing. It exhausts me.
And the worst part? The most selfish part?
I’ve never felt so alone in my life.
I’m so tired and so lonely. Lately, I’ve been melting down over the most trivial of triggers. I try to keep the grief at bay, both because I know Chris doesn’t feel it like I do and because I know how blessed I am to have my daughters. But the grief creeps and creeps and creeps until it overwhelms me, leaving me so much more than sad. It leaves me angry. I’m a fixer, and I can’t fix this. I can’t fix my daughter. So I yell. I slam things. I think shameful thoughts and I say things I regret. The self-pity frustrates me to no end. I mean, hello… I’m writing a post about myself instead of my twin girls, on the eve of their eighteen month birthday.
All I want is a few answers. Theories, suggestions even. What are the chances of Isaiah Jane being mentally retarded? Will every photo for the rest of her life give people an opportunity to mock her beautiful blue eyes? When will I meet other moms of kids with the same diagnosis? Where can I learn how to deal with well-meaning friends & strangers who say things that break my heart? How much longer do we have to carry the sisters everywhere we go? My arms are getting heavy, Lord. My heart is getting heavier.
39 Comments
I wish I knew the right words to comfort, but since I don’t, just wanted to send you some virtual support in the only way I knew how.
Oh, Rachel. My heart is hurting for you. Thank you so much for trusting us with your heart and your hurt. I understand what you’re going through, even though it’s a different scenario. My daughter, Phoenix, is 8. She has so many letters in her diagnoses. ADHD, SID, PPD, ODD, and anxiety. I know it’s different since Phoenix is physically healthy, but I can relate in the sense that I’ve felt disappointed and angry at God. I had a crappy childhood, got saved, served God faithfully for 10 years. We lost our first pregnancy. I was so angry. We got pregnant again, had Phoenix, and by the time she was 2 and a half, we knew something was different about her. The last 6 years have been crazy trying to get her the support she needs. I felt like God took away one baby and gave us one that is really needy and difficult. I have felt so disappointed. And ashamed. At times I think maybe she would be better in a group home than with us. I wonder if she’ll ever be able to live on her own. And I won’t even get started about how people have responded to us and her. And yes, it is lonely. We don’t get to go out much since she can be difficult to handle. She doesn’t socialize very well so she’s lonely too. I am jealous of other moms who have kids who can get dressed the first time they’re asked, or eat their dinner without having a full-on sensory experience. Or kids who can go to a birthday party without screaming about wanting the presents and have to be bodily removed from the room. Right now it’s hard. The summer was hard. I don’t know if or when it’s going to change. And it keeps me up at night. I’m so sorry you’re hurting so much right now. I can’t wait to hug you on Thursday night!!
Thanks for sharing YOUR heart! I look forward to meeting at Influence!
Sending so much love and strength your way. xo
What is IJ’s diagnosis?
cerebellar hypoplasia, an under-developed cerebellum on one side more than the other
Oh Jesus, please help us. Please help us carry Rachael now. In prayer. In love. In support. Let us be your hands to literally just pick her up and lift their family through this season. Father – we BEG of you, move. Move on her behalf. We love your hand. We love when it holds us and when it feels like it could so easily just push the obstacle out of the way, but by Your grace – you don’t. Will you move. Move in their life today and use us. Her friends, her girls, her sons, her husband, her community to carry her. Because we know you are.
Rachael, I wish I could hug you. I know you just need to vent sometimes. I am here. xoxoxo
p.s I love your girls.
I want to say so much right now to you. Just know that I’m praying. Praying for strength, peace, endurance. Praying that you don’t feel alone in it all. You are living such a story that is scripted by God. Thank you for being raw and real. Your words and YOU are a blessing to us. Our stories are different, but I hope that I can still support and encourage you. My sister is disabled and I often struggle with similar thoughts and questions. I have never met you, but I want you to know that you have support from me.
Praying.
Hey you. It’s ok to feel all the things you do. Don’t beat yourself up. Grief is a normal reaction to heartache and struggle and it doesn’t have a timetable or a step by step guide.
There is an army praying for IJ and for Honor Rose too. Our God is mighty to save and I know He is working on their behalf. We are praying too and have faith that His change is near.
I remember when I was in my lowest place, praying for a miracle of a child and someone reminded me that if god wasn’t growing a child in my womb, he was growing something in my heart and I needed to pay attention to that. I know God is growing something in you while you wait for growth for them. He always does right by his children. He loves you and your family so very much.
Love to you.
I love that phrase,”He always does right by His children.” Such peace in those words!
Oh Hun!! I wish I had wisdom, answers and a magic wand for you!! Sending love and calmness! xo!
Rachael, I will pray for you and your beautiful family. And if it’s even the smallest of consolations, at 2 1/2, my twins are often more than I can handle when away from home. And they walk and talk, without trouble. Remember that God challenged you when he gave you twins, and you’d be feeling and seeing the challenges, stresses, and blessings, whether HR and IJ were at the top of the growth chart and ahead of all the developmental milestones, or with them exactly where they are. Good luck and God bless. Here’s to a peace and family filled weekend!
Oh Rachael, you are an amazing Mom, you are doing a great job those girls of your will be more than fine everything will turn out ok I believe it! your words and experiences are inspiring so many, even when you have the hard times.
No advice just wanted to say that I think you’re awesome and I will be thinking of you guys. Hope you find peace soon.
Lord, thank you for Rachael and her precious girls. Please come along side her as only you can. Bring her answers and peace. Comfort her today. In Jesus name. Amen.
You are obviously a strong momma. I wish you lived closer, I have a handful of friends who have children w similar things who have incredible support groups And would have so many right words. I so wish you had more of that. God gave your beautifully and fearfully made babies to You for a purposeful reason, you have this momma because He has all of you! Thanks for living your life so openly, your honesty is inspiring and your lovely parenting is evident.
Rachael, I am sending you the biggest prayers right now, prayers to lift you up and blanket you in His love. You are an amazing mother and your heart is so big and strong. Take courage in the fact that you are, in truth, NOT alone. Your family will get through this and you will soon be able to walk side by side with your daughters, their little hands in yours as they grow and get stronger. Sending all our love from Louisiana.
All my thoughts and prayers are with you, Rachael. May God give your heart peace during this time of stress and questioning. Know that your family is loved and supported.
Oh, Rachael. I am so sorry. I know what it is to worry about your kids, not in exactly the same way, of course, but I know it is awful, and lonely, and terrifying.
My kids have never seen a pedi (working on that, at the moment), but my 3rd didn’t walk until 18 months or a bit after, and the comments, even from family members, really sparked a lot of anxiety and stress in my heart. (I’m fully aware this is not the same situation, but even a glimpse into people saying things about your child not looking right, not seeming away, perhaps being challenged, is a very lonely feeling. I can’t even imagine how you must feel, especially with 5 children, two of whom are twins.)
Your burden is real, and I know you’re grateful for your life. But the stresses are real, the worries are real, so don’t beat yourself up. I know you love your girls, which is exactly why you are biologically programmed to want the best for them, and why it isn’t easy to just wait, and continue to wait, without concrete answers.
You will be in my prayers.
I wish I had advice. The only advice I’ve got is to go running, or do yoga, or go on a long sweaty, grueling hike, preferably alone…have a glass of wine, read some good fiction (Jhumpa Lahiri is amazing), and just be in the moment, right now. Life is hard, for so many different reasons, and in many ways we can’t understand each other, but in many ways, we can.
Take care of yourself. You’re doing a great job taking care of your family. You’re meeting everyone’s needs in this moment.
(not seeming “awake”)…excuse me.
I am four years ahead of you, though it feels like yesterday when I read your story.
EVERY SINGLE QUESTION you ask in that last paragraph is one I ask daily.
Every struggle you have, every door you slam, I understand. I really do.
If you need to talk, I’m here. I’m a stranger, but I am here.
I also- just this week- set up a support group online through Dayspring. Maybe the ladies there could be of some Light to you.
http://texasnorth.wordpress.com/inable-community/
https://www.facebook.com/groups/inable/
Off to check it out! Thanks SO MUCH!
I gave your information to my friend, Sebree. She has twins as well one of which was diagnosed with Failure to Thrive and they can’t seem to find (or give) any answers. I hope she finds you. I tried to click the “Contact” link up top and it was broken. Hopefully you two can help each other feel less lonely.
I’ll fix the link!
kincaidparade at gmail dot com
your openness is amazing. you are so strong. so strong.
my son is 2 and he is not talking at the level he “should” be, according to the professionals he is wayyy behind. i worry every day but i just need to be. it’s so hard though.
you are so strong.
Thank you for the encouragement on the openness – it’s hard for me, but I try to keep it that way ;)
My niece was similar delays and they have done a ton of testing over the years starting at around 1 and still this summer. She will be 4 next month and they have thrown a lot of terms, like failure to thrive among others as well but they don’t have any real answers. She didn’t walk till after 2, and just got some plastic shoes/braces last year that she wore for about 6 months that did seem to help. She’s super tiny, getting tall now but still only maybe 23-24 lbs at almost 4. She started talking around 3 but still only says a few dozen words. But she is the happiest little girl and is now working on potty training. She has been working with physical therapists that come to her house and started preschool a year early and has a special aid that works with her and that’s been a huge help for her. I’m sorry I don’t have any answers, just wanted to share her story
keep your chin up mama!
“failure to thrive’ is such a horrible phrase. it’s not a failure that a baby doesn’t grow like another does, it’s just something that makes them an individual.
in a year or two’s time, those littlies will be RUNNING circles around you and their little ankles will be popping out the bottom of their pants.
it’ll be ok :D there are those in your life to help when the burden get heavy, just don’t be afraid to ask for the help!
xo
I am new to your “story”, and I know we don’t know each other, but I just wanted to tell you that you and your family will be in my prayers tonight.
oh these selfish thoughts….they are good, you know?! give yourself time! after all, they are ONLY 18 months old.
our second child was delayed with no clear diagnosis. it took me 4 years to accept it and stop these thoughts. they are still creeping in, on bad days esp.
find a support group! go out there and find a group! that helped me A LOT.
praying for you&your family!
leslie
Thinking of you Rachel, thank you for being so open and honest. I pray for the girls and you for what you need.
Hi. I recommend practicing daily declarations. They can be as easy as, “Isaiah will thrive. I walk in perfect peace.” If you want a great book to help get you started try, “Let’s Laugh at That” by Steve Backlund.
blessings.
Thinking of and praying for you and your family. No matter what the future holds, those girls are beautiful! Your family is such an inspiration in so many ways.
Rachael,
Your honesty and truth touches my heart. I started to pray and I feel like god put on my heart the story of Moses in the book of exodus. He gave me a visual of you standing on the mountain with your arms open watching H & IJ’s battles. He knows your arms are gettig tired. He want to be your Hurr and Aaron. He will hold your arms up and support you. He will be your protector of your heart and take up for you. He knows your heart. He will deliver for you.
Hello Rachel, it’s the first time I leave a comment on your blog, but I’ve been following you for some long months now.
I am not from the US, and from what I gather from what you say, the standards for certain milestones are more “strict” over there than here (Spain). So, if it helps, give yourself and your babies a little more space and time, like we do over here. They are wonderful little human beings and will thrive and learn, and teach us all along the way. They are perfect and our society is way too full of nasty concepts and judgements. Keep on being such a wonderful mom of 5!!
Love,
A
Your honesty always brings tears to my eyes. Love you, friend, and am praying for your heart.
this post was so honest and raw and brought tears to my eyes thinking about it. blogs always seem to be about the positives and make life with babies seems picture perfect and lovely. but life just isn’t perfect and lovely all the time. keep it up – loving on your babies and loving jesus and being real.
man i feel this. it’s subtle sometimes…the grief. and loud other times. but it’s there. God is with you today as you mother your sweet children.