Reid had 3 appointments today- 3!!! Think of how annoying one appointment is & then picture yourself there ALL day with a baby, ninging {breastfeeding for all you new friends} in dingy waiting rooms & then finding out just brutal news...Reid once again has pneumonia & as a bonus to end her 2 hour long eye appointment where they dilated her eyes, took the contact in & out numerous times to which I had to hold her screaming little body down, to be told that her "good" eye now has a small cataract as well...The surgeons will "monitor" it for now but end result will be surgery again...
So, I'm jealous...I'm jealous of all you mums that only have to deal with diaper rashes & coughs/colds...I'm jealous of you mums that get to sleep soundly because you aren't afraid your baby will be in heart failure or coughing with pneumonia...I'm jealous of you mums that get to plan your day around parks & get-to-gethers & not appointments or therapies...I'm jealous of you mums that don't have to worry about yet another surgery , the recovery & all that follows...I'm jealous of the "normalcy" you all have & the maternity leave you get to enjoy...
In reality when I stop crying, take a step back & take myself out of this pity party- I know that it's okay to be jealous of all that- Heck, I got to have all that with Noal...I know that every mum & every babe have a journey/challenge/story of their own- that everyone in their own sense deals with stuff...I also realize that anything big or small, whether it's heart surgery or your baby's first cold- Is a big deal to a mumma...I just so wish I was dealing with all that & not all this...
I feel so absolutely gutted again if I am being honest...Feels like Fate/God/Karma, whomever is playing this really twisted game- where He/She gives than takes over & over...Just when I thought all this was behind us, wham-slam-thank you Ma'am, it's all back again...The thought of another surgery & going through all that again is devastating...
But of course my Pip is utterly amazing...All smiles & giggles, happy as can be & teaching me yet again, another lesson in life...
Take each day as it comes & take it with a smile...Your such a Happy little Soul Pip...Sweet Jesus, I love you...
And you dear friends, enjoy your babies, hug them close, be thankful for whatever journey you are on with them...And if ya can send a little of that love our way...
31 Comments
We're allowed to have days/times to be jealous or just to be teary-eyed. You'll work through it and Pip will help you with her smiles, hugs and unconditional love. My Brandon is 19 and I still have those times but I would never, ever trade his love and I would go back and do it all over again and cherish it even more than I did the first time around! And yes, now I need a kleenex! :) Hugs to you momma!
ReplyDeleteAhhh sweet mommy, I know exactly how you feel and it's ok to feel that way. We've been dealt a different hand and it's not an easy one. We just came off of oxygen this past Sunday after our fourth round of pneumonia. My son is a twin and what was a cold for one became pneumonia for Will. It's such a struggle to deal with the jealousy of friends who don't have a clue about the difficulties we face. But at the same time, it makes the journey that much more precious when things go well and you get to experience the progress. But sometimes we get to just take the time to be frustrated with the trials and yes jealous. So keep your head up, tomorrow will be a better day and wallow when you need to.
ReplyDeleteI am not sure if you remember me or not but I am Laura Spencer's cousin. I have been following your blog for quite some time. Tara, I just want to say what a beautiful and courageous person you are. Reading your blog inspires me to become a better person and a better Mom. Your brutal honesty makes my heart ache but at the same time I am in AWE of you ,your family and especially your precious Reid. I pray for you everyday...Kim Drouillard
ReplyDeleteYour daughter has the most beautiful smile. I love reading your posts... I'm a mumma who gets so worried over the little things, I cannot imagine how difficult this must be but you are a strong woman who was given a beautiful little gift. She is inspiring, as are you. Your family is lucky to have such a strong and loving mumma. Thinking of your little pip and my boys and I will send prayers of strength your way.
ReplyDeletei am right there with you mama. had a pretty big breakdown last night after visiting with my best friend and her 6.5 month old typical baby boy. with most things i am fine, but watching him wolf down a whole bowl of sweet potatoes and breast feed no problem, seeing them NOT freak out every time their son coughed... broke my heart because i was so jealous. i felt like such an ass because for the first time in a very long time, since her open heart surgery, i wished she didn't have DS. i wished it for her, not for me. i am trying to use those feeling and turn them into positive changes and being more aggressive with weening her from the tube. i just want her to love food so bad. we are moving 2500 miles away from my family tomorrow!!! and near my husband's family, but still people i don't know to a place i am unfamiliar... this is the hardest job i have ever had. i knew being a mama was going to be hard, but being a special needs mama and finding out i may have MS myself, the person i was 2 years ago could not have handled this...
ReplyDeleteGod sent Lil Pip to the right Momma, that's for sure. Hang in there....a lot of people are praying for you Reid.
ReplyDeleteWell said! Looks like you both are blessed to have found one another. Wishing you all a long happy healthy life together. Thank you for sharing your story!
DeleteTara, you have a way of being so honest and in a way that would never be offensive...I hate that you are going through all of this, it is so eye opening..and I know that every mum that reads your blog is touched and looks at their own situation differently. Everyone has times when they are jealous of other families or other mums....you are deffinetly not alone and you have every right to feel the way you do. This is just how you deal with your feelings, by writing about them. Your writing is truly a gift and not only for you but everyone that has the privilege to read your blog. You are an amazing person and I am so grateful to have you as my friend... I love you and I am here whenever you need me in any way I can help.
ReplyDeleteLove Focks...
I have two typical boys older than Hailey and I feel jealousy towards other parents at times. I remind myself 100% that I had "normalcy" with them, but it doesn't change the feelings. I'm sorry you had so much for one day. It is hard. I pray tomorrow is better!
ReplyDeleteDifferent challenges...same feelings. You are a part of the crazy group of mom's who won the odd lottery and finds joy amidst the terrifying journey. Bless you!!
ReplyDeleteIt's fine to feel jealous same as it was fine to be devastated when we found out and same as it will be fine to be fit to burst when you get your first "Mummy". I'm afraid that everyone in the DS parents club has been in some very dark places (although always different!) but what I have found in our 2 years is that it gets better (and easier to cope with) and that there is always someone worse off! Hang on in there, it will all seem like a bad dream on that day when she's sat on your lap telling you how good a mummy you are xx
ReplyDeleteAwww Im sorry you are feeling so crummy :(
ReplyDeleteI think that every Mum is jealous of other moms at some point for some reason or another. Your feelings are so very valid and there is nothing wrong with experiencing lows like this its all part of life XO Just find comfort in knowing that you have SO many people thinking of you and ready to lift you up when you need it XO Reid is so sweet and is so lucky to have you for her Mum :)
Truthfully, I'm glad I'm not the only one feeling this! I only just clicked your blog link and read the first bit and feel very the same. Our 3 month old has DS and a heart condition. She has terrible reflux and was failing to thrive. Every day in May I sat in some doctors office hearing more news and more medicines they were putting her on. I think it's fair for us to express the "unfair" nature of it, but then realize we shouldn't wallow in it. I look forward to digging deeper into your blog!
ReplyDeleteTara, I am sorry to hear about the day you had with Reid yesterday. I am especially sorry to hear about the pneumonia and the news of another surgery in the future for Reid. Times like these seem very dark but believe me they are eventually forgotten. Reid is beautiful and happy, and she will get better. I have now sat here for a long time trying to find the words, words of wisdom if you will, or the right sentiment to bestow upon you ( being the father of a three year old with DS, Nathan from DSAK) regarding the way you are feeling right now. And all I can come up with is this, CRY, just cry. Ultimately crying is what helped me, and I don't mean necessarily a pity cry, just an unashamed cry to let it out. Words are nice to hear from people to let you know they care, but crying sets your body up for the next set of challenges that may come about. You're not alone so please don't feel alone, our family will be here to help in any way we can, so please use us.
ReplyDeleteJay
Your challenges are like an unmovable boulder that you push on day in and day out. Sometimes, you need to step back and shake out your shoulders to be ready to push again another day. Just another version of Jay's description that crying can be helpful. My son is 34, not with Down Syndrome, but another syndrome. Not hard for me to remember all the feelings you expressed. I often avoided b-day parties because they were too painful. OR, if I did go, I would want to pin a sign on my chest, so I didn't have to tell the same story over and over to new people.
ReplyDeleteJulie T. will give you my number if you ever feel like talking to one who has been around the block.
I think we've all been there and totally know what you mean. But I promise you, it will change as she grows older. The appointments begin to thin out, the therapies become fewer and further between as she eventually hits the goals set for her, and life will calm down. :-) ((hugs)) to you and your beautiful girl.
ReplyDeleteDon't be jealous Tara. It isn't healthy. Remember that things happen for a reason and God doesn't make mistakes. Reid came to a beautiful family for a special reason. Remember the saying that "I was sad that I had no shoes, until I met a man who had no feet". Reid is beautiful and will bring you joy.
ReplyDeleteHi Tara...it's what I miss that is heartbreaking...Shan's wedding, her babies, a daughter to talk to, go for lunch with, celebrate and hug. Some of these things may not have happened if Shan was still with us, but it hurts just the same. I just miss her. Life is not always fair and hard to understand. Your feelings are real and it is acknowledging what we miss, the love and support that helps us get through and enjoy life...hang in there, she is sweet and so special...hugs!
ReplyDeleteI have sooo been where you are. Don't feel bad about it. It's natural. My son has DS and is 4 now and doing well. But he had to have heart surgery, of course millions of therapies, tons of dr. appts. long ass eye appts.;), lots of colds that turned into constant breathing treatments/ antibiotics/steroids, feeding issues that I never thought would get better. And like you I had been where most moms were-just raising a typical developing baby-fever, what do I do!? Strange rash-she's going to die! Seemed like nothing compared to Bennett and when I would see the facebook status of yet another baby with a fever I would just roll my eyes in disgust. Of course I blogged about it, all the challenges. It was hard. But life is good right now. For now. I know it won't be easy but this kid is so darn precious to me. I'll take every single challenge that comes because I love him so darn much. Hang in there. Most likely things will calm down…hopefully. I honestly wouldn't change my son-I never thought I would be able to say that but he wouldn't be Bennett if he was different from what he is or "typical". Keep being honest, it helps, it's therapeutic. You're human;)
ReplyDeleteJust breath. Think of what the baby is going through. It's her being sick and dealing with dr appointments about her and surgeries on her. And she's still smiling. So pull your pitty party outa your butt. If it was as bad as you're making it out to bed then she would not be all smiles. It could be a lot worse. Stop making it sound like she's a burden to you. Uhg
ReplyDeleteYou're my first negative comment...Welcome...So, Anonymous I'd like to address ya here & now..Pip is all smiles because she's a happy little soul- It doesn't mean she isn't sick & that I shouldn't worry about her, especially after all she's been through...I realize everyone has a story/challenge/etc & that things could most definitely be a lot worse- But this is my story- my space in the world to share what I am honestly feeling...
DeleteAnd for the record Pip is NOT a burden, mistake or any other word that would mean as such...If I in anyway made it seem as such than I am sorry...You must have just read this post & not any of the others in which I pour out my heart to this precious baby girl...I hope you continue to read Happy Soul Project to realize it's just a honest little blog and as happy as I try to be, some days are just hard...Period..
Anonymous, This is a shockingly unsupportive message and clearly mean spirited. Tara, kudos to you for caring enough to express not only the strong and "keeping it togeher" moments...but also the moments in which you need support. You are wonderful and inspiring!
DeleteThanks Shannon- I feel it's important to be honest whatever the day...Happy Soul Project is about sharing the joy but also sharing so that y'all get an understanding of darker days...so thanks...
DeleteI have felt the very same way. My daughter was multiply disabled from brain cancer. Her life has been nothing but torture for the past 13 years. Try as hard as I might I just can't figure out what the hell God is thinking!
ReplyDeleteHi Tara....today was a first for me to read your blog. Wow,I think had I had this type of outlet 33 years ago when my daughter was born, the world would of been in trouble!! Lol I only say that because my daughter, Erin was my first child and I was 20 yrs old. Talk about a lot to learn! Your blog is easy to read and honest! I love it. Life certainly throws us some curve balls, but as I look back, there was nothing I couldn't handle. My heart just ached for my child. Today, she is a grown up and lives in a group home, has a daily program she attends, and a busy social life!! She is engaged maybe every-other-month and the girl can dance like you wouldn't believe!! You would absolutely love her! Thanks for sharing and keep up the good work! Much joy & love sent your way--Linda
ReplyDeleteTHANK YOU everyone for "listening" in a sense to my words/thoughts...For your understanding- Your encouragement, your support...For sharing your stories, for walking the walk before me, for extending a helping hand...What a beautiful thing this has all become- thank you for it all....
ReplyDeleteYou are an amazing mom. I stumbled across this site tonight and can't stop reading all your posts. And looking at the adorable pictures of your pip.
ReplyDeleteTaking a moment to be thankful and sending love your way!! Thanks for sharing and for bringing this Mom some perspective :)
ReplyDeletei so totally can relate... this is just exactly how i felt during my little Zaine's first few months... we were in and out of the hospital during his first month, several doctor's appointments and lab tests during his second month, then lens extraction surgery on his third month... he was confirmed to have Down syndrome on his fourth month too... it was a one hell of a roller coaster ride where we get good news from one doctor then bad news from the next...it was exhausting and seeing other moms who gave birth around the same time i did bringing their kids everywhere, i was jealous too because everytime my son and i went out, it was always to visit doctors and not parks or parties and such...
ReplyDeleteI came across your blog mistakenly. But it's probably one of the best mistakes I've made. Just one line of reading your blog, I knew you had lots of faith, hope and much love. My heart was in my throat.
ReplyDeleteFive years ago our granddaughter was born. At the time I was more worried about our daughter and her tough times ahead. Mother's Day and our Maddie's Birthday are still her hardest days to get through. But that's okay I understand. Her friends 3 yrs. ago told our daughter to quit mourning its time to move on.
As I'm reading your blog, I shake my head to make sure I'm not reading our daughters blog. Both of your emotions run high, truth and fairness is important and the what-ifs crosses her mind everyday. Everyday I see her heart open up a little more, even at 1,000 miles away.
God does do the right for everyone. On my wall is a picture that says " She knew that she was formed by God's hands, Dreamed up in his heart and placed in this world for a purpose". We Love her to the moon and back.
I would love for you to read her blog. And I do understand if there's no time. Because you've got a beautiful girl to raise.
I just came across your post when I'm sat here feeling sorry for myself and jealous of my friend who has everything, life just seems to get better and better for her, like everything she wants just comes to her, I am happy for her just so jealous.
ReplyDeleteMy little boy had cancer aged 2, he's ok now, but it was a long hard slog, I'm so uber proud of him though. Unfortunately I was just diagnosed with cancer too and although they say they've got it all, I just worry so much about the future, for all of us. So I think it's ok to be jealous of the mums who have it all and to miss that happy go lucky feeling you had before the worry. Also I keep telling myself how super lucky I am to have two amazing children and us all still be here and together despite everything. Keep smiling, keep loving and allow yourself to be jealous, life is so uncertain live in the present. Good luck to you and your lovely family xxx