Guilty

This may be my last post for a short while as baby boy will be soon joining us.  This is just something I've had on my heart in recent weeks and wanted to share it.  

I've known  three women who have given birth recently under emergency circumstances.  Two of them, I know personally, the other I know through someone else.  At any rate, each of these precious miracles is in their own battle.  Born severely prematurely or waiting for a diagnosis that these Mom's were not anticipating.  Oh how it takes me back.  Especially since I'll soon give birth again...anticipating a normal, healthy, uncomplicated delivery. As my heart aches for these mothers, I remember intently how much guilt I felt after coming home and coming to the full realization of the depth of my daughter's medical situation.  You may ask yourself, why?  why would you feel that way?  Well, plain and simple...I carried her.  Even though they said there is no medical reason why she was born with all these complications...right down to those chromosomal issues, I felt racked with guilt.  It took my several YEARS  to let go of that guilt. I had taken medications during my pregnancy to keep my BP in check, I struggled with blood sugar issues...how could they be sure it wasn't my fault?  After everything she was afflicted with, WHY had I let them do that external aversion which surely caused her brachial plexus palsy??  After everything else, why should she have to deal with a lame arm as well?  I experienced the harshest self loathing when she was in therapies that I knew were hard and painful for her or when she was suffering in the hospital and the ONLY thing I could do was pray for healing.  

In those NICU days, I was in survival mode.  I was grieving and just praying for survival..trying to wrap my head around all the harsh reality that was setting in.

My message here...I'm not sure.  Maybe it's normal to have that guilt.  I don't know.  All I know is that all that pain I was inflicting on myself did not change a thing.  Why it took me so long to be healed of it, I'm not sure.  I don't think it's ever something I've written of before..or really even shared with more than one person.  Just know, if you're reading and you are in beating yourself up similarly, maybe it's helpful to know someone else did the same thing and in the end, it won't profit a thing.  It will perhaps add gray to your hair and it will definitely steal the joy you could be experiencing in the moment.  

I've said it before, I'll say it again...

Homeschooling is not for the faint hearted.  The first week went great.  She liked it, she participated...the second week, we were working hard to just get engaged.  This week...she sees it's not a game.  This is hard work folks.  Not only are we trying to school, we are trying incorporate therapy as well.  ERMAGERSH.   OT is not to difficult to work in, but I can't physically make her produce a sound.  I can ask her to repeat it a million times, but I can't force it out of her.  I'm sure we will find our routine and we WILL have our ups and downs.  Mostly, for me it's a minds game.  I've already told myself a thousand times I'm incapable of this task...which is hog wash.  I'm capable.  I can do this.  This is not all for not.  I WILL see improvements.  Between school and potty time...I'm just about done in.  This child pees A LOT.  And now, I'm thinking it's her new diversion to get out of work.  Yeah.

As far as potty training...it is still going fantastically, however we are running into poop problems.  I'm not sure I'll ever find the right formula of miralax to give her.

It's time to do some brushing and do our written work.  Then we will be done for the day....i think.

Wow is all I can say

I recently spoke the words, "I cannot in my brain conceive that Lillian will be able to use the bathroom on her own".  Starting Monday, I took off her nighttime diaper and purposed to take her the the bathroom every 20 minutes.  I did.  She did fairly well, until evening and our friend miralax hit her.  She tried really hard, but for most of the evening she struggled.  I did not give her miralax yesterday and we only had two accidents.  Today...she is doing phenomenal.  She just now went and had a bowel movement on her potty seat.  I'm telling you I'm sitting her in stunned amazement.  It almost brings me to tears.  The only real problem we have??  She's so tiny, even the smallest underwear I can find are huge on her and are bugging her to death.  I'm totally amazed and feeling extremely blessed.  It's still hard for me to fathom that I will likely not need to buy diapers for her anymore.

Homeschooling is going pretty good.  She is interested and engaged once I get her settled down enough to focus.  Much to my surprise, I'm able to incorporate speech and OT activities into most of our day.  The bigger girls are helping with PT activities and I'm very pleased with how that worked out.  I was so worried I'd be a miserable failure at trying all of this, but by the grace of God...it seems we are thriving.  The only real problem, our cable has been acting up which is knocking out my internet which is a huge obstacle.  Hopefully that will be resolved today.  I do find that I need to really set aside time for planning out the whole week and get things printed, just so I feel more prepared.

Getting in the feeding stuff is a little more difficult...but I'm working on it.

Health wise, she is still struggling with this ear infection that threw her into a two week respiratory issue.  She is better, but still lots of gunk coming out of the ear.

She continues to show love and excitement about her baby brother who will soon join our family.  It seems so many huge milestones are hitting our family all at once...big, huge significant ones...oldest child licensed and driving her own car, baby coming, potty training....feels like such a sweet spot in our life, even with all the negative things that have recently happened.  God is good.

These are the days I feel nervous...

Our girls started back to school this past Thursday.  All in all everyone is happy to be back.  I will be homeschooling  Lillian this year. I'm waiting to hear back from her teacher who will oversee what we are doing and also provide materials.  Ironically, she fell sick the day before school started.  Waking up vomiting, coughing and running a fever.  Her cough sounds like croup.  A first for her.  She had to go off formula feeds for a day, but her night drips are not going well, as every time she sneezes or coughs, she gags/pukes.  Our good friend albuterol has rejoined our med regime and today we have notated a foul odor coming from her ears.  She IS and HAS been on antibiotics virtually non stop since January, and her illnesses have seemed fewer and perhaps less severe.  Hopefully, she will soon get back to baseline and we can start a routine here before baby boy makes his entrance. Seems like most of the time her junk lasts about a week.

These are the moments when I feel fear creep in.  Taking care a her being sick and also having a newborn to care for.  Lord give me strength for the journey ahead.

Feels like smacking into a wall over and over and over...

I'm sorry everyone, I try...I mean I desperately try and do for the most part stay positive about most everything.  Relatively speaking.  But here I am awake way before necessary because I'm plagued by irritation.  Once again, I'm left grasping at straws as I seek medical advice from those "guiding" Lillian's care.  I have been waiting since Thursday to hear back from her pediatrician in regards to this whole therapy situation. Well.....yesterday I get a phone call from one of the nursing staff letting me know that "speech therapy has sent them a recert to continue therapy...so everything is set for her to continue with therapy"

HELLO???  Do these people even LISTEN?  Do they HEAR me?  I told her that I was aware they were getting her recert because I've already told them I won't take a break at this point in time.  I REexplain to her the situation and she goes on to tell me it's my choice.  ARE YOU KIDDING ME???  I go on to let her know that I"m aware that it's OUR choice whether or not to take a break, and that I'm NOT asking the DR to "gang" up on the therapists with me.  What I'm seeking is medical guidance from the professionals in charge of her care.  Is this a difficult concept?  Am I the one missing something here?  Once again....it's fully laid on MY shoulders....there is NO medical advice given except.."oh he signed the papers, you're good to go".

Hear that pounding sound?  That's my head against the wall.

Seriously, waving the white flag...throwing in the towel....I'm so frustrated.  I think I told her that her phone call was no help at all.  I was totally exasperated by the end of the conversation.

Sometimes...it seems to me that THEY see a child with a very limited potential... that she is so delayed that it doesn't matter if she regresses.  It feels like they are saying it just doesn't matter.  Perhaps my expectations are just unrealistic?

There are so many type-o's in this post, I gave up trying to correct them as I went.....

Just another day in the life....

So...you think I have it all together...

Pardon me, but step aside whilst I vent...Since my darling daughter has been born, I had to step in a be a full time nurse.  (no offense to you "schooled" nurses) but yes, I was and still function in that role. The ONLY difference is my shift didn't ever end after 8-12 hours.  I remember crying because I thought she would never know I was her mom because I was pushing meds, giving breathing treatments, changing trachs and gtubes, dumping feeds, cleaning vomit, changing linens...forget being able to cuddle or love on her...there were too many machines and tubes in the way for that...oh and let's not forget machine maintenance and upkeep. Waiting for hours in waiting rooms for countless appointments only to be let know up front if you were ever 10 minutes late you would be rescheduled.  Countless hours in surgery waiting rooms.
 Oh yes,  and an administrator/insurance person.  Can't even count the number of phone calls and appointments just to get insurance needs met.  Then we had therapy coming in...so add to that all the fun exercises, stretches, and "tortures" I'm needed to add into our already unending day of demands...but hey, I don't work outside the home so what else could I possibly have to do?  Oh wait...endure the endless crying of your tiny baby ON therapy days because even though it's painful and hard work you know it's for the best.  *insert hooking myself to a milking machine every three hours of the day because it's the only way I feel like I'm being a good mother*

How about depending on "professionals" to be guiding you in the right direction...no matter what you think maybe right and getting years down the road to find you really were and you feel like you just didn't fight hard enough.

I still do most of these tasks, minus several machines.  As of this fall, I will undertake her education needs as well because it's best for her health.  As of today, I will be her nurse, teacher, advocater, insurance person, PT, OT, ST, and feeding specialist because her therapists think she needs a break...bc they feel she's in too much of a comfort zone AND due to my pregnancy and the new baby soon to come, "I won't/don't have time to do what needs to be done for her"

There are days that I feel like a complete failure. It's never ending...and days like today come and go routinely.  Someday, maybe, I can separate my emotions for all the "jobs" I'm carrying, but today is just not one of them.
 Thank goodness for my friend in GA who let me call and we talked, laughed, cried and shared our still very similar journeys.  She's the lifesaver God threw in the ocean to me several years ago.  Talking to her made me feel "normal".
In the end, I'm just an ordinary person living in extraordinary circumstances feeling the weight of the life of my precious child's life in my hands.

*exhale

Looking back AND ahead

This past weekend we spent packing up the craft/storage room to make room for baby.  There is still much to be done, but there is progress.  As Matt brought in the gently used crib that had been given to us, my heart did a little flip flop.  I didn't think he was going to put it together, but he did and now I look at it in amazement.  It just doesn't seem real.  Of course, it sets my mind to thinking about the last few weeks of pregnancy with Lillian.  Maybe some know, maybe some don't...I was on bed rest due to blood pressure complications and we HAD to move from our home.  We were losing the home we had bought and lived in the last couple years.  We moved in the first week of November, and because of my bed rest, most things still sat in boxes piled up everywhere.  Three weeks after moving, she was born.  My sister and girls had been busily preparing the room for Lillian fully anticipating our arrival home shortly after delivery.  Diapers opened and waiting, dresser drawers filled with all her little clothing.  Everything in  it's place.  Waiting.

It is almost bittersweet to be preparing this room for our little baby boy.  Sounds strange doesn't it? While I don't sit around lingering on what if's, I would be lying if I didn't say that fear creeps into my brain at times.  Even through my whole pregnancy with Lillian there were never any signs that she would be so critically ill when she was born.  So as closely as I'm being monitored and ultrasounded, that thought will pass through my mind.  I think breathing will come much easier when I hear his first cry and see him breathing effortlessly.  For me, it is a strange mingling of grieving and joy.  Back and ahead.

What I do know?  God is sovereign.  He is already there, preparing our future, whatever it holds.  My faith is strong.  

Romans 8:28 " And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."

PS- Lillian loved having the bed put together and she insisted he needed a pillow in there too, so she went to the couch and placed one in the crib...AFTER she got her step stool so she could reach.