My five year old bombarding me with questions; "Where's the needle?", "Can I try?", "Does it hurt her?","Why does Pippy get to have that and not me?".
My 10mth old who hasn't taken his eyes off me since I had to leave him the entire day yesterday, to take his big sister to the hospital.
And then Pip...
My little girl who has already been through so God damn much. My little girl who bravely takes on life, like we all should. My little girl who now, has yet another life changing diagnosis.
Yesterday, we went to her Eye Surgeon to discuss the possibilities of surgery for a permanent contact lens for her Congenital Cataracts. Inserting & removing a tiny minuscule contact in a squirmy-outrageously-upset little girl is starting to become impossible & we wanted to hear about other options. That appointment alone was physically and mentally exhausting. Imagine if you can, having to hold your child down in your lap while someone pokes around in their eyes. Imagine if you can, trying to distract them for hours upon hours because appointments are running behind. Imagine if you can, hearing your child potentially needs another surgery after y'all have been through more then a dozen already.
Then try to imagine getting through all that but still needing to go to another appointment - Feeling for a week or two like something was up with your child. Just knowing that something was wrong. Imagine thinking because of their excessive drinking & peeing you just assumed something was off with their thyroid medicine. Imagine thinking your appointment would simply be a discussion to change dosages & maybe if they really had to, do some dreaded blood work.
Then imagine seeing the look your child's doctor has given you time and time again when bad news arises. Imagine finally breaking down and crying, simply not being able to keep it together. Imagine feeling like it's always one thing after the other. Imagine hearing your child has Down syndrome, then Congenital Cataracts, then Congenital Heart Defects, then Hypothyroidism, then needs tubes in their ears, then has major issues with their hips & knees. Top it all off with a life changing diagnosis like Celiac Disease & add in all the therapies, blood work, surgeries and appointments.
Imagine then if you can, having the doctor put her arm around you & explain that your child now also has Type 1 Diabetes. Imagine losing it, dropping your head in defeat, feeling the weight of her words and simply groaning "FECK". Imagine trying to reign in your emotions but can't stop crying, your almost in hysterics because you feel this must be a joke, there is no way one child can have so many things. Imagine nurses who have known your child since she was born, coming over to hug you but with each embrace realizing how serious this must be. Imagine having your child rest their little head on your knee because they think you are upset only to then have to hold them down for more tests, more pokes, more blood work while they just cry & scream "momma" over and over.
Imagine learning to work an insulin pen, how to poke your child's finger to do blood sugar tests & get up the nerve to actually give your child insulin shots. Imagine being deathly afraid of needles yourself, to the point where you pass out more times then not.
Imagine having to know what to do if your child goes unconscious because their sugar levels are too low, or having to work out a diet that is Diabetes & Celiac compatible.
Imagine being so scared of yet another thing that could potentially threaten to take your child away.
Imagine thinking God or Fate or whomever is running this show, is outta their freaking mind to unfairly give your child yet something else to battle. Imagine feeling so utterly overwhelmed & never being able to catch your breath, finally getting use to one diagnosis only to receive another.
Imagine after a day like that, rocking your little girl at bedtime, thinking she is asleep, so letting teardrops fall. Imagine her then reaching up and gently touching your cheek, wiping away your tears in her own way and snuggling in deeper as if to let you know it will all be okay.
Imagine if you can, all of this. And then you will be me. The momma in the pantry needing to cry because you just gave your daughter her first shot of insulin.
Type 1 Diabetes you don't know what you're in for - Pip and I, are gonna kick your arse! Might take a few pantry-cries to get there, but we will.
40 Comments
Brought to tears. Your love for your dear Pip is beyond any words and why the two of you need to travel this road is also inexplicable, but the two of you will tackle it with every ounce of strength you can muster...and then you'll find some more. There's a community that loves and supports you through it.
ReplyDeleteOh girl, you are one strong mama with one very strong young lady! You have got this! And just know you are not alone in the pantry crying. Do what you gotta do.
ReplyDeletePip is so very, very lucky to have you as her Momma.
ReplyDeleteI'm not a Momma, but I have diabetes. I remember the shock I felt when I was diagnosed...and can imagine multiplying that feeling exponentially if it were a little one whose Momma I am.
I hope your doctor hooked you up with resources like the JDRF (Juvenile Diabetes Research Foundation). I'm thinking that if Pip already had thryoid issues, that the doc you are seeing is an endocrinologist. If not, a combo of diabetes and thyroid issues definitely needs the expertise of an endo.
Finally, there is a Facebook group called "CGM in the Cloud" which you might want to explore when you are ready. A Continuous Glucose Monitor (CGM) could be a HUGE help for you to monitor Pip's glucose levels rather than having to contend with so many finger sticks.
Sending you lots of good thoughts and a virtual hug from an Internet stranger. You and Pip WILL kick the cr@p out of diabetes. xoxoxo
I read this with eyes full of tears and all I want to do is give you a great big hug. I read your post to learn how to be strong when thing get tough. You are a true inspiration to me and so is Pip. Thank you for sharing your stories and your life.
ReplyDeleteIt is much more than one baby and mama should have on their plate. I shed tears for you reading this. But I do believe in the ass kicking abilities that you two have. Xoxo
ReplyDeleteYou are strong and amazing. Hang in there! Pip is so lucky to have you.
ReplyDeleteYou are strong and amazing. Hang in there! Pip is lucky to have you!
ReplyDeleteIt's definitely not he easiest thing in the world to go through... thyroid disease, diabetes, and heart, kidney, and liver troubles... I've been at this point myself for a long, long time. The only thing we can do is just be hopeful, and keep ourselves surrounded by the people who care deeply about us. I hope everything gets better for Pippa and yourself. It'll be my 12th year with diabetes, my 2nd year with hyperthyroidism, and my first year with potential organ damage and/or failure. We just have to stay positive. It'll be okay. ☺
ReplyDeleteI'm in tears reading this. I cannot imagine what you are going through. I'm so happy you have this project and that social media - as annoying as it is- can give you strength and show you compassion. I hope you soak up every ounce of that from all of us. My family to yours, know you are not alone and watching pip has been amazing. I'm so happy I came across your page and have been in love with your sweet girl ever since. ❤️
ReplyDeleteSomehow you always make me cry!! I'm crying with you. Every time I have an issue with Norah I think of you. I always know that you and Pippy have overcome and took on so much in these past few years that it gives me the strength to do the same as you. I cry when I need to and swear or eat chocolate and don't feel guilty when things just aren't going the way I want. Please know we are thinking of you and you definitely deserve a good cry in the pantry anytime you need it!! Courtney & Norah
ReplyDeleteYou are one strong woman, Pip is beyond remarkable
ReplyDeleteThis has made me cry & am si sorry life has thrown all this at her at once & still so young.
She will overcome it all, she will conquer it all.
Much love to you all
I am so sorry that you and your family are going through all of this. I know there are no magic words that will make it all better, but please know that we are all here supporting you. Your strength and positivity in the face of such overwhelming (to say the least) adversity is absolutely amazing. YOU are amazing. We are all with you every step of the way. My thoughts and prayers are with you, Pip, and your family.
ReplyDeleteI cannot express enough how very much I wish I could take away some of your pain...how I could make it easier - not for you, but for Pip. How I could make our kids be kids just as they are but without quite so damn many Dr's, diagnoses, conditions and challenges to juggle. I love you for your honesty, for being one of "us" the infamous "another challenge" club. Welcome, hold on, but above all I wish I could wish it better. I wouldn't change our angels, just some of the environmental and medical nightmares they face.
ReplyDeleteI'm crying with you...
ReplyDeleteI am in tears reading your blog today. I also have a little one with DS, while we haven't been through nearly what you and Pip have, I understand. I understand the appointments after appointments. I understand having to hold your child down while they poke around over and over looking for an"good" vein in her little hands and feet. Or having to see her go under for ear tubes, hearing tests, heart tests. How sad is it that by age one your baby already fears doctors and doctor offices? or has to have her day's interrupted by therapy sessions? I know how you feel momma, I understand your pain and the anxiety that comes with it. You are not alone. So have as many pantry moments as you need...then come out and continue the fight.
ReplyDeletePrayerful hugs sent daily to you, and Pip and your family. Thank you for putting your feelings into words, those of us with healthy kids take it for granted. My heart goes out to you, and yes, you are right, you are having to deal with so, so many health issues with Pip. You are allowed to cry, scream, cry, drink wine and eat chocolate. And then be the most loving, strong Mom that you are!!Germaine
ReplyDeleteI am in tears reading your blog today. I also have a little one with DS, while we haven't been through nearly what you and Pip have, I understand. I understand the appointments after appointments. I understand having to hold your child down while they poke around over and over looking for an"good" vein in her little hands and feet. Or having to see her go under for ear tubes, hearing tests, heart tests. How sad is it that by age one your baby already fears doctors and doctor offices? or has to have her day's interrupted by therapy sessions? I know how you feel momma, I understand your pain and the anxiety that comes with it. You are not alone. So have as many pantry moments as you need...then come out and continue the fight.
ReplyDeleteMy heart breaks for you and Pip. It isn't fair that she can't "catch a break" so to speak. I haven't been following you for that long, maybe a year, but I've gone back and read all your posts about Pip and she is such an inspiring little girl! After all she's been through she still radiates joy, happiness and has this spark to her like nothing is going to get her down.
ReplyDeleteEven though this is another (really, really effing unfair) blow to you and your family, I have no doubt that you and Pip are going to kick type 1 diabetes in the arse.
I was just forwarded your blog today by a friend because my child also has Celiac and T1 diabetes. I wanted to let you know it gets easier in so many ways and that you aren't alone. I dont know if you can see my email on here, but feel free to send me a message. I'd be happy to share some of the online groups and resources that have helped us navigate these. Best Wishes.
ReplyDeleteHugs.....I'm sending hugs.
ReplyDeleteAll mommas have their crying-in-the-pantry moments. For me, I eat drumstick ice cream on my front porch to gather myself and take a breather. I'm so touched by your writing and you give strength to all moms reading this, those with kids with challenges and without. Thinking about you and your family as you navigate these new waters.
ReplyDeleteLove you and your fam T. You are ferocious and I admire the zest in your words. You've got this like you've rocked everything else. After all, you are the Rocket xoxo buddy ❤️
ReplyDelete-Pone
You got this. I can only imagine what you are going through. My little girl was diagnosised with down syndrome when she was two weeks. Only a parents love can tackle a trial like this one. You got this. Keep on loving and praying!
ReplyDeleteMy daughter Madison also has DS, is 5 now and was diagnosed at 10 months with T1D. My husband also had to learn to get over a life time fear of needles in one weekend at Sick Kids. The one thing I can offer is that the research and money going into T1D is huge - for the cause and a cure and I have heard (fingers crossed) that we may see a cure in our lifetime, maybe one thing to knock off your list. If you ever want to reach out - highwaycat@rogers.com. Rebecca
ReplyDeleteI broke down in tears reading this, then bawl my eyes out as I read that she wipe your tears away. As a new mother myself, everyday presents different challenges, so imagining myself in your shoes made me appreciate everything we didn't have to go through. Be very strong mama. Our thoughts are with you
ReplyDeleteHi, my name is Molly I'm 18 years old and I was diagnosed with type one diabetes about a year and a half ago. I was hoping to lend you some comfort in saying as bad as it seems I actually think I'm a better braver person for having it. I was 16 when I was diagnosed it was the day after st Patricks day and the whole week before I was drinking crazy amounts of water, peeing all the time, my vision was so blurry I couldn't read stuff that was right in front of me, and I was throwing up. I was miserable when they sent me to the hospital. I remember crying myself to sleep each night I was there. When I got home and went back to school I realized that it really didn't change my life so much. I actually made a bunch of friends that also have type one diabetes because of it. I even find that my close friends will ask me if I've checked my blood sugar lately and they will make sure if I have a low blood sugar that they help and much as they can. My mom had a really hard time with the diagnosis. They made her give me shots and check my blood sugar to show that if I was unable she could. She never cried in front of me but I knew she cried. A lot. We were all really worried how it would affect my life. We all thought that because of it my life would be different. I'm very active in sports and we were worried they would tell me I couldn't do that anymore. When I told my cross country coach I had diabetes he told me that he would do anything to make sure that I could still run. Now I'm not the best on the team. I'm actually probably one of the 10 slowest runners but everyone I talked to was so open and willing to help me deal with my diabetes in any way they could. I realize that Pip has a lot more medical issues than I do and that it complicates a lot of things, but from what I can tell from your blog is that she's a hell of a lot stronger than I am and she will be just fine. You are even stronger. You are one of the best most caring and loving moms I've seen (next to my own of course!) It's okay to cry, hell I think it helps. But realize that Pip will have an amazing life and type one diabetes will not slow her down. I hope I'm not bothering you with this I just wanted to give you my perspective so that you could see even though type one diabetes is really scary and overwhelming, if you give it some time you will find its not so bad.
ReplyDeleteI wish you all well and want you to know your blog gives me hope and happiness.
With love -Molly
I'm so sorry. NOT FAIR. We have a son with Type 1, mito, hypotonia, and Autism. Nothing anyone can say will make this better, but you will somehow manage. There are tools out there to help and you will somehow learn to deal with it too. But cry all you want. You won't be alone.
ReplyDeleteRESPECT
ReplyDeleteYour commitment
Your honesty
Your warrior spirit
Your passion for your family
Your vulnerability
I'm so with you on this. Not the same but my eldest daughter Mia, was diaginosed with cancer at 4, imagine al the tests, bloods, chemo scans and appointments! Mia passed away when she was 6, two years later I had a beautiful rainbow baby Phoebe who just last yr was diaginosed as type 1 aged 6. Why my children? but then why not my children? You are clearly one strong mamma, keep up the good work stay strong and keep smiling :) thinking of you xxxxx
ReplyDeleteMy heart aches for you. I'm so sorry. I can't imagine how hard this is for you and Pip. But, you two have battled through SO many things!! You will be able to do this!! and there is no shame in a few pantry cries!! You got this!! and we are all cheering you on!! I wish i can could give you a big big hug and hand you some tissues. Sending you all my love. ❤️
ReplyDeleteI have been silently following your blog for quite a while now and just wanted to send my love and support. My son has had some health issues and a surgery at 9 months and it was by far the hardest thing I've ever been through. You are stronger than I can imagine and your kids are so so lucky to have you and to have each other. -Lisa
ReplyDeleteAlways read your posts Tara as you inspire so many and are just a fantastic mum. Felt every bit of your pain in this post, its overwhelming that you have another hard diagnosis to deal with, far more Tha a beautiful mum and her girl should have to. But where there is love there is strength to overcome the next challenge and there is love in bucket loads. Huge huge hugs look forward to you and pip kicking diebetes arse big time xxx
ReplyDeleteI cried as I read your post. I'm so sorry that you and Pip have another major challenge to overcome. Just know that you are both an inspiration to so many people. So cry as many tears as you need to cry because you are a strong woman and you've got this! Your children are lucky to have you as their mother.
ReplyDeleteI've tried to turn off my Facebook page several times over the last year and each time I turn it back on because I miss following your story. You and Pip are such an inspiration and remind me daily of how life should be embraced, not just lived. You are both so strong and will find a way to surmount this obstacle like you have done with all of the others. You are all in my prayers.
ReplyDeleteFrani
From one Mum of a Type 1 child to another, I'm so sorry you've had to go through yet another diagnosis. The first few weeks are a real rollercoaster and it's like living in a bubble. It does get easier eventually and life goes on...just in a different way than you had planned. It unfair, and times it's horrible and frustrating but there are times when it's just a new normality. The Type 1 community is amazing and you'll find plenty of support when you need it. xx
ReplyDeleteThis had me bawling. Can't even imagine what your going through but you are one tough momma. It's not going to be easy but if anyone can do it you can. I've been following you for a while now and everything that gets thrown at you, you figure it out and make it work for your family. You are such an inspiration to so many people and one to your kids. Keep your head up momma! You have three amazing little people that love you dearly ❤️
ReplyDeleteYour news made me weep Tara. So tough for you all. So many people are thinking of you, make sure you get all the support you can. Hugs from England, Jess xx
ReplyDeleteI'm reading this at work with tears running down my face... Pip is the sweetest little girl and she is very lucky to have you as her Momma. Your ongoing fight for everything for her is unbelievable! You are an inspiration to a lot of Mom's with children with Down's. Your right, Pip doesn't deserve anymore hardships, but with you at her side she will conquer them. You have a lot great support and a lot of love and you couldn't do it without either! And shedding a tear every now and then is OK!!
ReplyDeleteOh Momma! Just when you think you cannot handle one more thing. I hope that pantry can give you the shelter and moments you need to just let.it.out. Wishing that all of us who love you and care about you could take on even an ounce of your pain and struggle. Sending you love. XOX
ReplyDeleteSobbing along with you Mama. I always say Down syndrome is a freaking walk in the park compared to what my child has endured with his Crohn's disease. Sending our love to you and Pip.
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