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.