Ball 1: My mother in law is not doing well. We put her in hospice yesterday. We know that it will be a blessing when she passes. She has so incredibly many complications with her medical issues (all diabetes related - diabetes is a terrible disease!) She has dementia. She started to refused to eat and drink so we are taking the cue to just let her go. We cannot force treatment anyway.
We debated at length about if the kids should go and see her or not. My husband did not think the kids should see her - especially how she was on Tuesday. She was unresponsive most of the time, but at the end of the night punched him as her sundowners took over and her combativeness began. We had just spent time with her the previous week - a brief time between hospitalizations when she was up and alert and able to hold a relatively ordinary conversation. But, we decided yesterday to let the kids come up and say goodbye to her. They really don't know her any other way than in the nursing home (since 2010), multiple hospitalizations, often not knowing who they are, etc. She has always had such a gentle and welcoming spirit though and is always ready with a smile. She is not a complainer. That is a trait that I wish I could emulate better - I must say that my stress level is currently such that I fear opening my mouth because not much positive comes out. I am pretty much utterly overwhelmed. So, I have tried to avoid posting on fb or making other chit chat as my dad taught me that if I didn't have something nice to say I should say nothing at all! Why am I blogging then? Partly because if I can't speak I still need to get the words out...partly because blogging helps me to unravel my thoughts and put them in some kind of categories and logic. Sometimes.
I totally digressed there. I am afraid this post will involve many bunny trails.
So, last night all 8 of us went up to see my mother in law. My husband was already there and he was uncomfortable when we got there. The problem is that my mother in law thinks that my husband is her ...husband. She believed that she was in the hospital and they just had a baby girl. She was thrilled that so many people came to see her and the baby girl. She was laughing and giggling. When words came out of her mouth that were actually words and not gibberish we all didn't know what to say so we just smiled and agreed. That resulted in my husband being a little (jokingly) frustrated with me when she told me to talk to her husband, I asked where he was, she pointed at my husband, and I just agreed. I am not good with words right now and don't think that I am describing the visit well, but we were all laughing. We were all poking fun at my husband. He was very good natured about it and laughing too - nothing was mean spirited about any of it. We were not laughing at my mother in law. It was just probably the best way to deal with the tension and the reality. My husband is torn between wanting to spend this last time with his mother and being really creeped out at her insistence that he is her husband. We laugh a lot that he doesn't even look like his dad did. I am not being irreverent, really. We were so thankful that the visit was light and full of laughter as a last memory for the kids. I don't know if we will go up there again as a family. We will let the kids decide if they want to go or not. JJ loves to go up and see his grandma and didn't really notice that anything is different. She hasn't been able to have real conversations for a long time anyway so he just sees it as getting to say hello and be "busy" in her room. The Middles - it is a little different. They have already had more loss and abandonment and rejection than anyone should have to have. Grace is still quite traumatized by her aunt dying Memorial Day 2014 and all of the grief with that loss (and that she hasn't gotten to see her bio family since then). Superman and Faith are just - quiet. Like usual. It is hard to get them to put emotions into words. Buddy is matter of fact and not relational so he is fine. Beautiful is struggling with death, loss of a grandma right before her wedding, loss of us as parents being focused on her wedding as we are dealing with this trauma, etc. It has probably been the hardest on her, and Grace. We have taken the opportunity to use this to discuss the importance of having a saving faith in Jesus and what the reality of death is about.
Alright, that was quite enough of that topic I think...
Ball 2: The Wedding There is really no way for me to even put any of it into words. IT IS LESS THAN ONE MONTH AWAY!!!! I am stressed. overwhelmed. afraid that it will not be pulled together in time. frantic that I am forgetting huge details that will make this all a disaster. and reminded constantly that this.is.not.my.giftedness!!!! Stomach in knots. Crazy. Despite what is happening with my mother in law we still have to keep moving this forward. My husband needed a break from 3 days in the hospital and with his mom is as "stable" as she can be for now he and Buddy took off for Menards (and other stores) to try to restore his equilibrium lol! He loves to shop. I would rather do almost anything than shop. Ugg. If she still remains stable tomorrow we will be heading to another town to get the boys' suits, all of the kids dress shoes, all of the paper products, etc. Again...Uggg.
A friend came over last night and made the bouquets for us. She is so amazingly talented and I am.so.thankful!
Ball 3: Letting Go
I don't like this ball any more than the others. I hate letting go of Beautiful. If I stop and think about it too long I start to cry. So, I will keep this short. I am so happy for her. I am so proud of her. I am so thrilled for the next adventure of her life. But I will miss her fiercely. She is my Beloved, my First Born. I refuse to be one of the "those" mother in laws...but boy will this be tough for me! We keep trying to have as much time together as possible, but between my mother in law, the wedding plans, work, the other 5 kids, and Beautiful working 6 days a week from noon to 8 lifeguarding we don't see her much. I wonder if it will be this hard with all of the kids? I feel like by the time JJ is gone we will be in the nursing home lol!
Ball 4: Grace
Grace, Grace, Grace. About a month ago we doubled her ADHD medication and added a sleeping pill again. We have also retested her neurotransmitters and will see if she needs another supplement. We are hoping that there will be more nutraceuticals she can take to help more. The current plan is certainly helping. ADHD is a terrible disorder too:( We have discovered more holes in her walls - one of them all the way to the outside. My husband was not happy with all of the repairs that he will need to make to that room. I deep cleaned every corner of her room last week and took out all of the objects she was using to make the holes. She still sneaks them in there but I will just have to keep on top of it.
Ball 5: My Back
I really hurt my back again. It seems to have been around the time I helped at camp but I can't think of any specific incident that would have hurt it again (that probably answers if I will help at camp again if asked). The pain was getting pretty bad again and I absolutely cannot even bear to think about the pain getting back to the level it was at in July 2010 when I was first diagnosed with the herniated disk and started traction...6 weeks before JJ came. I look back to that time and shudder. In the past 5 years I have regularly gone to the chiropractor and continued traction - but it has not been nearly as regular. I will make sure I get back into a routine. I have had traction and an adjustment twice in the past 4 weeks - once being yesterday when the pain was down my leg and I struggled walking. I am MUCH better today. I have learned over the years what things I cannot do (NEVER sit on a floor, not sit in recliners, no walking inclines, no jumping, not sit with my legs out in front of me, etc). Ironically those things hurt me far, far worse than carrying our now 45 lb 4 year old. Odd. Thankfully JJ rarely wants to be carried anymore - yay!! So, I am just dealing with pain and trying to be very careful:)
Ball 6: JJ
This one is a little happier and I will end on this note:) JJ is doing great! He still has his temper tantrums that are crazy. They are not as frequent. He is eating well. Talking better - the SPL is very, very pleased with his progress. I keep thinking that he is quite understandable compared to 6 months ago, but we have had the opportunity to be around a variety of people lately and most of the time they do not understand him. So...progress but still a long way to go:)
The music therapy has been, I think, a key part to his improvement. That is common with kids with Apraxia. He still hangs back and won't engage much with the other kids and sits on me rather than in the group. I have taken Faith with twice and she got him to engage so will keep doing that and try to back out a bit. He needs the social interaction.
An aside - I have thought a lot about this, but will only briefly mention here, how much being in the music therapy class with all of those other kids with speech/language issues - has helped me to see JJ's issues more clearly. One of those issues is that those other kids have speech issues but do not have the severe separation anxiety that JJ has. I have thought a lot that his anxiety was due to people not understanding him so he looks to me a lot to answer for him (or he can't "retrieve" the word to say). But he just plan and simple has severe anxiety around strangers. Immobilizes him. Praise the Lord we home school him and he doesn't have to go to a situation every day that terrifies him! He really relaxes with the music too:)
The biggest blessing (and frustration to be utterly honest) is sleep. Sleep has always been such a problem for him and with all of the Apraxia symptoms we didn't know how sleep fit. Well, it must have been all related because now that his brain is finally "waking up" and he is improving so quickly...sleep is most definitely being affected too. So, that means that he is now waking between 6 and 8 a.m. most days of the week. The other days it is closer to 8 - 10, but most days it is early. However, this does NOT mean that he goes to sleep any earlier. Thus, I get 5 - 6 hours of sleep:( AND, for some reason he is waking more in the night which means that while we had a 3 week period in May/June that he slept in his own bed ALL NIGHT (Oh, what sweet restorative sleep that was for me!!) he is now up and in our bed often by 2:30 a.m. If I actually get out of bed and take him back to his bed he is back by 5.
The up side is that he is eating earlier in the day without being nauseated! yay!
Clearly his brain is waking up and he is making awesome neurological connections! yay!
When we have to wake up early for something (church or therapy) he isn't sick any more (well, actually, he usually is up on his own way before that now and doesn't have to be woke up). But still, yay!!!
When he fell asleep in the car on the way to therapy this week (he woke up at 6 a.m. after sleeping less than 6 hours) and I had to wake him up...listen to me be giddy here...HE WOKE UP AND DID WELL!!!!!. If you remember back to session 3 and my description of him falling asleep before we got there and his typical reaction of being woke up you may understand how happy this makes me. I cannot even go on enough about what a major, major development this is for him. Ecstatic I am! I can practically see his little neurons joining, making memories, and learning lol!
The down side is that I am not getting good sleep. But, that is certainly not a new development in the past 5 years lol! Once I am woke up at night I cannot fall asleep for all of the "to do" lists and "what are we going to do about that" discussions that run through my brain.
So, that is that. We have been eating subway, pizza, PB&J (actually, i never made PB&J for my kids but somehow Superman discovered at camp that he loves it so has been begging for it lol!), and whatever can be thrown together. I really need to do some better meal planning but I just can't wrap my head around it. I have a roast in for supper tonight - that will be helpful.
I am hoping against hope that I can get a nap while the 4 watch a movie without causing chaos this afternoon. Hopefully I can sleep and not be worried about what they are doing...
Superman has finished his undefeated baseball season!!!!! We have the tournament this Saturday and Sunday...in the 90 degree weather;) It will be great lol!
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