There are strangers in our house - almost 17 hours a day, 7 days a week. You know that phrase "you can't live with 'em, you can't live without 'em"...well, it describes them perfectly. I wish we could "live" without them, but at this point, I can't. Don't get my wrong, most days I enjoy these strangers - they allow me the freedom to get things done without having to be a full-time mom and a full-time nurse to Toby...but some weeks are hard. This week has been hard, so I had to make a list of grieving - grieving over for life not being normal.
Here are a few grievances this week:
1. One nurse pointing out the white spots in my painting job - claiming in her note that she "knows I was looking for them" (I was not.)
2. Little privacy
3. Someone watching and critiquing almost every parenting decision I make or...don't make
4. Related to 3 - but someone watching me lose my temper when all three boys are fighting (which happens to be frequent as of late - is it time for school to start again yet?), or Caris is whining and screaming (oh how I forgot what it was like to have a "normal" toddler) for two hours straight.
5. Watching me lose my patience in the library today while Caris screams, Toby is purposely getting in the way of us trying to check out and just sitting over on that bench watching us...
6. The conflicts they have with Toby - not giving him enough independence
7. Knowing when to step in and ask her to please do his care the way we do it so there won't be any conflicts
8. Almost answering my front door when clearly I can reach it...
9. Feeling helpless to change the situation
10. Frustration because I don't have the energy or presence of mind to take care of all 4 kids by myself 24/7 and sometimes she is Toby's "stand-in" for myself...
11. Not being able to cry and throw a tantrum because she's here..in the house...and at 4:30 p.m. when she leaves the urge to cry will be gone.
Okay - that sounds really negative, but this is the reality of our life. Most weeks they are wonderful blessings, but some weeks they are frustrating annoyances. I feel like a chicken penned in by the restrictions of their charting, med sheets...please can't I just raise my child the way I want to - can't we cath him in his wheelchair without worrying about your back issues? It may well be time for a change - not sure what kind of change, but a change none-the-less. I know that already my mind is working on and praying through a plan of care system to help Toby become more independent. He is getting older and doesn't need to lay down in his bed for every medication given, trach care, and straight cathing. It's time - praying that I have the courage and discipline to plan this system and implement it after our break away from all nursing care next week (much needed - I know that God has orchestrated the timing of that).
I am going through a time of grieving again - grieving for what could have been, and for what has been lost - our life of "not normal"...I know God is there in the grief...and as my friend Jen reminded me through this scripture:
2 Corinthians 4:16-18 "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us and eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Thank the Lord that this is temporal, and the hope of heaven is on the other side....trying to remember that these trsome days this "normal" seems too much to bear. It oubles are momentary - just a moment in the light of eternity. Trying to remember that others are dealing with far worse situations than myself, I can't complain...but it can be so difficult.
Friday, June 24, 2011
Wednesday, June 8, 2011
Mommy Tantrums!
(Bear with me - it is a bit long!)
I bet the title may have caught your attention, and yes I'm ashamed to admit it, but I had a bit of a mommy tantrum last week. Let me back up a bit and give you a run down of the events leading up to my tantrum!
May 23rd - Toby is admitted to the hospital
May 24th - Garrett has a field trip - I miss it because alas Toby's in the hospital
May 25th - Toby goes under anesthesia for an extensive MRI
May 26th - Toby's discharged to his ENT appt. and we make plans for his 10th surgery
May 27th - Paint the kitchen - two coats; take Conor and Garrett to stay with Lynsey (my sister) for weekend!
May 28th - Paint specific living room walls, take Toby and Caris to park
May 29th - clean house, prep food for company, touch up paint!
May 30th - Cook-out with friends; their son falls on our slip-n-slide and breaks finger (is having surgery on his finger this week)
May 31st - Last week of school begins with end of the year picnics, parties, and chaos
By Friday, June 3rd - I'm exhausted and begin to have the "crash" that seems to happen after Toby's been in the hospital. My sister and her fiance came into town the night before to help me divide and conquer for the last day of school activities. They went with Conor and Garrett to the school pool party, and I went with Toby to his ice cream party intending on making it for at least some of C & G's event, but not really making it - I ended up there at the end..and we went home. SO, here's the tantrum you've been waiting to hear about. I left the pool party with the three kids to go home (Toby's at home napping with nurse) and decide to get ice cream to celebrate the last day of school.
On my way, I need to stop at the library to return some overdue books and to fess up that Caris had ripped two of them. (Keep in mind - I am headed home to pack the car to leave with Caris, Lynsey (my sis), and Anthony (my future BIL) to go to Michigan for the weekend for Lynsey's bridal shower on Sunday). One book wasn't that bad - could have easily been taped and the other was a board book - should have been more durable, but I guess in the hands of a 16-month old - not so much! Well, they inform me that I have to pay full price for both books, but that I get to keep them. It was the straw that broke the camel's back and I had a meltdown - complete and utter 2-year old meltdown. I didn't rant or rave, just contested the hefty fine with a supervisor, and broke down into tears, explaining that it's been a rough few weeks, and this was the last thing I expected...(even though I know that they do NOT understand in the least). Finally, I quietly paid the fine and left (and vowed to NOT return to that library for I'm sure that an alarm will sound next time announcing that the crazy lady has returned!) Thankfully the three kids were in the car, but immediately saw me crying my eyes out and wanted to know what was wrong!
Later, I questioned why in the world I was having such a hard time these past few weeks and after much contemplation, I learned a few things about myself. First, when Toby has an unplanned hospital stay - during the actual stay I do great because I'm running on adrenaline...which seemed to have lasted through the weekend and into the next week (hence house painted!), but later, I crash! In the moment, I don't have the time to "feel, grieve or mourn" the fact that we aren't normal - our family isn't normal...we are raising a medically fragile special needs child. In the moment, I have to be strong for him (so he doesn't fall apart while they stick him 4 times for an IV) and the family so we don't fall apart. I'm still trying to keep things normal for the kids at home, while making major decisions that affect Toby's health, while being vigilant that he's getting the best care he deserves. It's tough.
The other thing I realized is that this has happened before - after Toby's March hospital stay, and I need to plan on it happening again. I think it's okay to gear up, be strong, but I need to realize that afterwards when the adrenaline rush is over - the grieving will come. Every hospital stay is a reality check that the "normal" life we have made exists, but not always...life isn't normal for us. Sometimes it's very isolating...we have lost friends - new people are more reluctant to be our friends (at least some)...I'm not sure if it's fear of "it" happening to them or that we might be needier than most friends (which is true at times). I also remembered that it's okay to grieve and not appear all put together which I sometimes do because it's the one thing I can control. And in the end...even though it all may fall part or others may fail me - God will NOT. He is trustworthy once again and I can trust HIM through it all. The song below has been very comforting to me over these last few weeks - I in no way compare the grief I experience to the grief of losing a loved one to death, but I can certainly relate with many of the thoughts/emotions expressed by this song.
"I Will Trust You" by Stephen Curtis Chapman
I don’t even want to breathe now
All I want to do is close my eyes
I don’t want to open them again
Till I’m standing on the other side
I don’t even want to be right now
I don’t want to think another thought
I don’t want to feel this pain I feel
Right now pain is all I’ve got
It feels like its all I’ve got
But I know that its not
Oh I know you’re all I’ve got
And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You
God I’m longing for the day to come
When this cloudy glass I’m looking through
Is shattered in a million pieces
And finally I can just see You
God you know I believe its true
I know I will see you
But until the day I do
And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You
And with every breath I take
And for every day that breaks
I will trust you
I will trust you
and when nothing is making sense
Even then I will say again
God I trust You
I will trust You
I know your heart is good
I know your love is strong
I know your plans for me
Are much better than my own
So I will trust you, I’ll trust you
I trust you God, I will
Even when I can’t see the end
And I will trust you, I will trust you. I will
Even when I don’t understand
Even then I will say again
I will trust you, I will trust you. I will
I know your heart is good
your love is strong
your plans for me
Are better than my own
yeah your heart is good
your love is strong
your plans for me
Are better than my own
And I will trust you
You are my God
I will trust you
I bet the title may have caught your attention, and yes I'm ashamed to admit it, but I had a bit of a mommy tantrum last week. Let me back up a bit and give you a run down of the events leading up to my tantrum!
May 23rd - Toby is admitted to the hospital
May 24th - Garrett has a field trip - I miss it because alas Toby's in the hospital
May 25th - Toby goes under anesthesia for an extensive MRI
May 26th - Toby's discharged to his ENT appt. and we make plans for his 10th surgery
May 27th - Paint the kitchen - two coats; take Conor and Garrett to stay with Lynsey (my sister) for weekend!
May 28th - Paint specific living room walls, take Toby and Caris to park
May 29th - clean house, prep food for company, touch up paint!
May 30th - Cook-out with friends; their son falls on our slip-n-slide and breaks finger (is having surgery on his finger this week)
May 31st - Last week of school begins with end of the year picnics, parties, and chaos
By Friday, June 3rd - I'm exhausted and begin to have the "crash" that seems to happen after Toby's been in the hospital. My sister and her fiance came into town the night before to help me divide and conquer for the last day of school activities. They went with Conor and Garrett to the school pool party, and I went with Toby to his ice cream party intending on making it for at least some of C & G's event, but not really making it - I ended up there at the end..and we went home. SO, here's the tantrum you've been waiting to hear about. I left the pool party with the three kids to go home (Toby's at home napping with nurse) and decide to get ice cream to celebrate the last day of school.
On my way, I need to stop at the library to return some overdue books and to fess up that Caris had ripped two of them. (Keep in mind - I am headed home to pack the car to leave with Caris, Lynsey (my sis), and Anthony (my future BIL) to go to Michigan for the weekend for Lynsey's bridal shower on Sunday). One book wasn't that bad - could have easily been taped and the other was a board book - should have been more durable, but I guess in the hands of a 16-month old - not so much! Well, they inform me that I have to pay full price for both books, but that I get to keep them. It was the straw that broke the camel's back and I had a meltdown - complete and utter 2-year old meltdown. I didn't rant or rave, just contested the hefty fine with a supervisor, and broke down into tears, explaining that it's been a rough few weeks, and this was the last thing I expected...(even though I know that they do NOT understand in the least). Finally, I quietly paid the fine and left (and vowed to NOT return to that library for I'm sure that an alarm will sound next time announcing that the crazy lady has returned!) Thankfully the three kids were in the car, but immediately saw me crying my eyes out and wanted to know what was wrong!
Later, I questioned why in the world I was having such a hard time these past few weeks and after much contemplation, I learned a few things about myself. First, when Toby has an unplanned hospital stay - during the actual stay I do great because I'm running on adrenaline...which seemed to have lasted through the weekend and into the next week (hence house painted!), but later, I crash! In the moment, I don't have the time to "feel, grieve or mourn" the fact that we aren't normal - our family isn't normal...we are raising a medically fragile special needs child. In the moment, I have to be strong for him (so he doesn't fall apart while they stick him 4 times for an IV) and the family so we don't fall apart. I'm still trying to keep things normal for the kids at home, while making major decisions that affect Toby's health, while being vigilant that he's getting the best care he deserves. It's tough.
The other thing I realized is that this has happened before - after Toby's March hospital stay, and I need to plan on it happening again. I think it's okay to gear up, be strong, but I need to realize that afterwards when the adrenaline rush is over - the grieving will come. Every hospital stay is a reality check that the "normal" life we have made exists, but not always...life isn't normal for us. Sometimes it's very isolating...we have lost friends - new people are more reluctant to be our friends (at least some)...I'm not sure if it's fear of "it" happening to them or that we might be needier than most friends (which is true at times). I also remembered that it's okay to grieve and not appear all put together which I sometimes do because it's the one thing I can control. And in the end...even though it all may fall part or others may fail me - God will NOT. He is trustworthy once again and I can trust HIM through it all. The song below has been very comforting to me over these last few weeks - I in no way compare the grief I experience to the grief of losing a loved one to death, but I can certainly relate with many of the thoughts/emotions expressed by this song.
"I Will Trust You" by Stephen Curtis Chapman
I don’t even want to breathe now
All I want to do is close my eyes
I don’t want to open them again
Till I’m standing on the other side
I don’t even want to be right now
I don’t want to think another thought
I don’t want to feel this pain I feel
Right now pain is all I’ve got
It feels like its all I’ve got
But I know that its not
Oh I know you’re all I’ve got
And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You
God I’m longing for the day to come
When this cloudy glass I’m looking through
Is shattered in a million pieces
And finally I can just see You
God you know I believe its true
I know I will see you
But until the day I do
And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You
And with every breath I take
And for every day that breaks
I will trust you
I will trust you
and when nothing is making sense
Even then I will say again
God I trust You
I will trust You
I know your heart is good
I know your love is strong
I know your plans for me
Are much better than my own
So I will trust you, I’ll trust you
I trust you God, I will
Even when I can’t see the end
And I will trust you, I will trust you. I will
Even when I don’t understand
Even then I will say again
I will trust you, I will trust you. I will
I know your heart is good
your love is strong
your plans for me
Are better than my own
yeah your heart is good
your love is strong
your plans for me
Are better than my own
And I will trust you
You are my God
I will trust you
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