Friday, September 3, 2010

7 months in

Okay let me first say I hope this post doesn’t upset any of my family and friends. I don’t know who reads this and who doesn’t but this is my outlet and I don’t want to have to filter myself on here to be PC.

Joshua has been dx with D since Feb 2010 it has been almost 7 months. He is only 18 months and is not communicating his diabetic needs yet and heck truth be told we still don’t know his patterns yet. T1 is absolutely an art form not a science. 2+2 DOESN’T equal 4. Joshua has been left less than 5 times without Brian or myself. Only 1 of those times he was awake and none of them for longer than 2 hours. The reality of it is though that we have not been on a date in 7 months. We have learned how to have great family dates. We haven’t been to our church in 5 months. We went one time and kept Joshua with us. ***THIS WAS A NIGHTMARE*** We have turned down several invites to events because they weren’t kid friendly or just one of us went. When my dad was in the hospital for 14 days in July, Joshua had to go with me to help my mom and dad during the day and when he was in the ICU I couldn’t go to the hospital because I had no one to watch him. On top of all this my son is now stranger phobic - and this doesn’t work for me. HE SCREAMS like crazy if we see friends and they want to hold or play with him. This is POST hospital stay. PRE hospital stay he was loving to everyone, never fussy (except right before dx) and very friendly.

I have had LOTS of offers from friends and family to watch him, but I am not sure they really want to take full control of all that goes into watching a little baby with T1 that cannot communicate at all with you his needs. He can’t tell you when he is low or to remind you that EVERYTHING that goes in his mouth must be counted and covered. He can’t tell you to make sure you get all the bubbles out of the needle because every bubble is taking up space for his life support meds. That if you leave bubbles you are not giving him enough meds and when he is already on diluted insulin every nano space counts. I actually had someone say to me *lovingly* I can watch him really how hard can it be... I was fully prepared to give up date nights and solo time with hubby. We have enjoyed our cost savings as only 1 of us gets to go do something at a time, but alas there are events coming up that force us to change our ways.

I have a friend getting married. I’ve known her for 21 years. It is a no kids wedding. What do I do???

My beautiful sister has planned an elegant and magical wedding day on 10/23. Jackson my 4 year old is her ring bearer. I have been looking forward to this day for so many years and as her maid of honor I AM SO EXCITED to participate in every pre-wedding set up I can. My husband has also been asked to be a groomsman. Now, my sister has made every effort to make this as easy for us as possible, but really it is still not "easy" (well not as easy as it would have been pre dx). The wedding is at 4:30 on Saturday with a black tie reception to follow. Sara has arranged (very graciously) to have a group called the wedding sitters to watch the children upstairs during dinner and dancing. That will be easy enough, we will just take him up and go up to check on him ourselves. Pack all his own snacks, and meals, and STRESS to them the importance of not giving him anything else. But Friday and Thursday with all the pre wedding activities is where we have issues. My in-laws have agreed to come and watch the boys Friday during the rehearsal dinner which will be on a beautiful boat in the PA harbor. We will gone for SEVERAL hours, not counting the morning of the wedding getting ready, doing pictures, hair and makeup. (not the kind of thing you want a cranky, teething, 18 month old tagging along for) This however will be the In-laws first time doing ANY of Joshua's d care. I am not sure how to walk the fine line of being over protective and being careful. I’m not sure how to make sure they know EVERYTHING they need to know and not be condescending

My dad has been diagnosed with Bladder Cancer and will need to begin chemo in the next few weeks, I need to be able to be there for him and my mom, I WANT to be able to drop everything and take him to some treatments, to help when and where I can but how can leave Joshua with anyone who might not be as careful as I am? HOW can I ask someone to quite literary be responsible to keep him alive?

I am a creative memories consultant and every year we have an incentive trip to great locations. I have earned 6 of the last 8 years. Brian and I LOVED these trips and Jackson loved staying with his grandparents. I missed 1 because Joshua was being born :) and one this year because of the dx. The next trip is a week in Cancun... HELLO we could use this trip as a couple... BUT really a WEEK of asking someone else to take care of our son, to do 12 am, 3 am and maybe more overnight checks... HECK there is no way. So instead I am going to have to take someone other than my husband and still have to get someone to stay at the house to help take care of Joshua while Brian works. or not go... tell me what kind of answer is that??

Our church doesn’t have a child care center that I feel comfortable in so we have begun the search for a new church... We went this last week and Joshua did okay. I tested before I left and just told them use only these snacks, count what you give him and I’ll do the rest. 1 hour later I came back and he was fine.. I was fine and I did the math for the snacks.

I AM SO TIRED I can’t think straight, I fall asleep sometimes while trying to spend time with Jackson when Joshua is napping. When both of them nap I feel guilty if I nap because I then have to cook, clean, work, and do laundry when they are awake and I want to be a better mom then that. I feel so guilty about it MY husband is amazing and is working so hard to keep us afloat when all this insurance and job crap has happened. he does the 3 am shift most weekends and tries to let me sleep in on the weekend, but when does he get a break...

I just feel so alone (outside of you guys of course) I feel like everyone has so much going on in their lives and I know we could have it so much worse. YES D SUCKS!!! But thank GOD there is treatment and a course of action to take. There are other mothers blogging right now about making burial arrangements, mothers blogging about children who will never know laughter or running. Mothers who are blogging about illness that are so rare and so horrible that they don’t even have support groups to participate in. AND I KNOW I should be grateful that Joshua is otherwise healthy and okay, but dang it I am pissed right now.

I guess when it all gets down to it I am pissed that my child can’t be carefree. That my family can’t be care free. That I am having to create a care manual to care for my child. That love, food, water and safety aren’t enough for him. That I can’t just let him to play at a friend’s house, that he can’t just get dropped off at the grandparents, that I can’t just let a hotel sitter watch him. I am pissed that when he sees the testing kit come out he holds out his finger.... When I go to hand him a drink he signs "test test test" to me. That I feel like I have to say every time someone hears my baby has D that he didn’t get it from lack of diet and exercise but from an auto immune issue. ( I mean really do you think I gave my 11 month old soda and ho hos???) I am pissed I am giving in to all this anger and not being the perky, happy, mommy I was 8 months ago. That my temper is getting the better of me lately, and that I cant multitask anymore. I miss me… I miss who I was…

Thank you for letting me rant and if you are a friend of mine or family PLEASE don’t take any of this the wrong way. I love you and appreciate all you do for us. I want to let you watch Joshua we just have to learn together how to do that.


  1. Let it out. It's okay to be angry and upset. I'd like to tell you it gets easier, but I think in reality we just get used to it so it starts to feel normal. I wish we were closer so we could help.


  2. Yep, What Danielle said. I think eventually it just becomes sooo normal you kind of forget that it is hard. Shannon this is all so new to you and your family still and I admire that you are blogging about it. I think writing it all and getting it out will be such a huge burden lifted off of your psychological state in a few months to a year. Everything you said above was how I felt for the first year and a half...and Joe was 3 at diagnosis.

    The wedding!!! Oh I, just did that whole shebang...Dave and I were in it...Bridget and Joe were in it. Joe is now 7 and it still was difficult at best. I am glad you are getting a care manual ready and it would be great if you could get a couple of people trained on his care...however, I say that...and I didn't leave Joe with anyone for like 2 years (LOL). It is easier said than done.


  3. oh sweetheart... i love you. i know it is hard- but i will never no how hard it is. your family and friends love you, love brian, and love jackson and joshua. but you are right, you have one little boy who can not survive on love alone. in regards to the wedding- please understand that your children are as welcome as you are to every single event. Also, please know that it will be completely understood if you or brian need to not be at anything. your love has been felt for years- what do you think about if joshua came to the rehearsal dinner (we would love to have him & they have highchairs at resturants you know) or even if one of you stayed at the hotel. There are endless options we can explore. Morning of- we will be at the hotel the ENTIRE time before we leave for the ceremony. Hair and makeup is coming to us. :-)

    When is the cancun trip? Rob and I would LOVE it if we could help watch him. I am very comfortable doing what needs to be done to take care of him and Rob is a doctor who has done weeks of Endo care- specificly Type 1. After Nov, I will be setting my own schedule 100% and sending him (them!) to Aunt Flower and Uncle Rob for the week would be something I would LOVE! (we can talk more about it... I am typing a novel here) Just *know* that you will not always feel this way...and yet in the moments you feel this way, that's ok too. The way out, is the way Through. It sucks. and It always Will. But some days... some days, it will suck less than others.

  4. Shannon, it has been almost 2 years since Elise's dx and I STILL have never left her with anyone. If fact, the date of my c-section will be two years and 1 day to the date Elise was diagnosed. It will also be the first time my husband and I will leave her in the care of someone else. TO say I am having major anxiety about it is a HUGE understatement. BUt I know it needs to be done. I need to let go and see that it will be okay. but it is so much easier said than done, right?

    I just want you to know that everything you are feeling is normal.

    I emailed you a copy of the care doc... did you get it?

  5. Shannon, I read this at 2am last night when I was watching over a high blood sugar and I had too many things I wanted to say to you swirling around in my sleep deprived brain I couldn't get them all down.

    It is especially hard with such a young child and the first year with D is extra challenging anyway. Everything you are feeling and going through is normal and I am pretty sure ALL d parents have been through it. Heck..I am still going through it 2.5 years later!!

    It took my husband a year before we left Addison for a couple of hours with someone else! It is HARD.

    I send you a big gianormous hug from Seattle. It will get easier and more "normal" as time goes on. You have lots of us here for you to listen whenever you need to let it all out!

  6. Keeping you in my thoughts and prayers. It is so hard, and people don't understand. They don't give it a second thought. And it can be so frustrating trying to figure things out - a friend texted me today to invite me to dinner and a movie in a few hours and I thought, "How does she think I can do that? How do I find a sitter I would feel comfortable leaving her with for that long?" It must be so much harder with such a young baby. I am so sorry. Good luck with your weddings - I hope all goes well.

  7. I understand.

    I just want to reach through my computer and hug you...and tell you that you're doing a great job.

    We've been on less than 5 dates in the five years since Sugar's dx.

    We've NEVER spent more than 3 hours alone...and we've NEVER EVER been away overnight.

    This is hard.

    This is really really hard.

    I validate you.

    I hear you.

    I heart you.

  8. I think you spoke for all of us in this post. I think I even have a post about missing the person I use to be... you know, before D.

    You WILL get there. He WILL start communicating his feelings better. I would suggest spending a couple days "hanging out" with the in-laws before you need them to stay with the boys. ALSO, you would be soooo surprised about how much Jackson knows about taking care of his little bro :) Not that he needs to do it... more that he can verbally help.

    I know its hard, but a few weeks ago when I asked my MIL to keep Justin for a bit... she had to "think about it". She was scared... I get it, but in the end she said... "I need to learn to do this just in case one day I don't have a choice". That was a pretty stong statement and honestly, I had never thought of it THAT WAY.
    We don't go places anymore either... I know what you mean when you say "one of us will go". It's like leading seperate lives right?

    Just remember that your family loves you and Joshua more than anything. Let them help. Let them learn in short amounts over the next few weeks because you never know when there wont be a choice in the matter :)

    Lots of (((hugs)))!!! OH BTW~ sounds like you have a pretty AWESOME sister.

  9. Your post made me cry -
    I understand. All I can say is --- SAME ----
    No dates, no girl time, sleep - what is that? I fall asleep sitting up sometimes. I hear you!

    I wish I was there! I wish I could hug you, help you and babysit for you!!

    I so wish we lived closer!!!

  10. Honey,

    We do what we have to. You are an amazing Mom in all that you do. You most definitely do not give yourself enough credit. How often have you been spot on about a low, when all you had was a feeling. You have given up a lot to make this work, but we will make it work.

    I know that it is hard, and I don't know if I am ready to leave him with anyone for any length of time. I know that we have to try and get used to the idea, but it terrifies me too.

    You do so much for this household that seems to go unnoticed. I appreciate you. I love you. I need you. We need you. There is absolutly not another soul on the planet I would rather be doing this with. All we can do is keep spinning :) 3 am here we come!

    Love, Brian

  11. Awww, Shannon - your post breaks my heart a little. Because I KNOW how you feel. Its hard to turn your little guys care over to someone else. It will ALWAYS be hard to do so... but eventually - when you are ready - you will find that doing so will give both you AND him some room for growth. I pray for you that God will help you find the right way and time to do so. (((HUGS))) and love to you Momma - hang in there!

  12. I feel your pain and frustration, I haven't left my kids with anyone since they were diagnosed with's hard and I get it. It's been just over two years and I have had no time for me, no date nights with the hubby...nada.

    I think we all understand the struggle and we definately get it.


  13. Oh, Shannon, it is so difficult to have a little one with D. We D mamas get it. We live with the same feelings and frustrations. Take comfort in knowing you're not alone, though I know that doesn't make your circumstances any easier. (((HUGS)))