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.  

Dr Lungs update and other good stuff

Lillian spent her very first over night away from Mommy at Grandma's this past weekend.  Course, two big sisters were along too, and she only really cried for me at bedtime.  It was entirely her idea and she basically ushered me out the door and slammed it behind me.  When I had to come back and drop off her car seat, she was none too happy to see me again already. lol.  Growing up.  It just so happened that the other two girls were off at camp.  It was the first time in seven years we have had a night alone with NO children.  So peculiar.

Today, Lillian has her quarterly appointment with Dr Lungs.  She will remain on her rotating antibiotic course.  Inhaled meds one month and a change to a different oral/gtube med on the off month.  It did bug me that her sats were just 94/95.  She used to always sat at 99/100 when she's healthy.  It made me wonder if it is a sign she is having diminished lung capacity.  94 is still a good number...I just rather it had been higher.  She will likely remain out of the classroom this fall due to her puny factor.  The one time this year I've exposed her to a small group of children, she got really sick.  ICK,

She is super excited about the baby on the way and loves kissing my baby bump.  She loves sorting through all his baby things and oohing and ahhing over everything.

It's been a long day, as always when we make a trip down south, I'm whooped.  Not really too much more to report, thank goodness.

Summer time

Lillian has been brewing something for about a week and about three days ago came to bed with a bloody ear.  It concerns me how much she has bloody ears, but what's a mother to do.  She has tubes, in tact.  Dang sinus issues.  I know that's how it always starts.  EVEN though she is on and has been on antibiotics constantly since January I think.  Anyway....she is very excited about the baby and no longer makes the gagging face when we talk about him.  Him, did you notice?  In case you are new here, after five little ladies, we are adding a baby boy.  Everyone is thrilled and Lillian is getting a huge kick out of the baby clothes that are coming in here and there.  Today, my mom dropped off a few things including a teeny tiny pair of shoes.  Lillian keeps picking them up and saying "aw" (she has the cutest way of saying it) and she kissed every side of the shoes. Too cute.  She loves kissing my belly and telling the belly that she is the best not Dad.  LOL.  In her way of course.  I've come to realize that most of her conversation comes out in frustrated sounding noises, but she's not really frustrated, it's just how she's communicating, even if she is just "saying" see you later.  It sounds very harsh.

One of my daughter's friend came by today and brought Lillian a tank dress from her vacation trip...she just adored it.  That girl loves her some dresses.

Lillian also got an invitation to her first little person birthday party.  I think it's the first time she's gotten an invite to a kid birthday party, but I'm not 100% sure. I sat here the other night contemplating the party..wishing Lillian could go...but it's a bouncy house party and with lots of other 3-4 year olds running around and older children  potentially...it's probably not the safest thing.  It made me sad.  The flip side, the Mom invited us to come the next day after the party bc they would still have the bouncy house the next day.  Warms my heart that she would extend the invitation bc she knows Lillian is fragile.

I'm a little disheartened that she isn't taking to eating like I hoped she would.  If you'd asked me three years ago if I thought she'd still be using a feeding tube for her source of nutrition, I would have thought no.  Now, at this point, I'm wondering if she'll ever be without it.  Only time will tell.  I've learned or am still learning on this journey that I can't take anything for granted or make assumptions.  Three years ago, I never thought she'd still be wearing diapers.  But, here we are.  She seems to have NO concept of when she pees and #2, well she can't even do that on her own with out medication.

Overall, we are kicking back and taking it easy for the summer, late nights right along with late mornings.  Course, we still have therapy to attend twice a week and the occasional dr appointment thrown in.  She is just a few months away from turning seven....wow, I can't even believe it.   By that time, she'll be a big sister. Even harder to comprehend.

Crushed by words

You know, I try not to be too sensitive about the things people say.  Usually when a stranger says something rude or inappropriate, I may get irritated, but it's easy to let it go.  It's harder when a loved one does it.  Recently I was in a gathering and one person said to another, "close your mouth you look like someone missing a chromosome" I was utterly shocked and felt like someone stabbed me in the chest.  Anger was not even a response.  I was crushed, the pain that struck me was close to unbearable. I had a little cry and pulled myself together.  I tear up now as I think of it again.  On my drive home, the words just kept bombarding me over and over in my head...I felt so totally crushed. That's the only way I can think of to describe it.  I'm not angry....just crushed.  I cried for more than half the drive home, holding back that sobbing cry...bc well, I was driving.  The sting of it is less, and I've spoken of it without tears, time to pray away the pain and be washed with the healing salve of Jesus.  And maybe cry about it for the last time.

Dancing Queen

This little girl had a ball last night.  We attended a lovely wedding and after the nuptials was some dinner and dancing.  She started out with a slow dance with daddy and mommy and then the party got started.  Not only did she boogie her little heart out, but oh did she enjoy dancing.  While this momma sat watching and sometimes hovering nearby holding my breath that she would not be knocked down or throttled across the floor.  I did do the chicken dance with her and all the video I took was very brief.  My pictures didn't turn out at all. On a side note, Isabelle was particularly happy that I am pregnant so I would not get on the dance floor and break out my moves...course, not one to miss a moment to embarrass a teenager, I broke out a few "signature" moves from my chair.  That was sufficient to put her in a tizzy.  It's good to be a Mom. ( Insert thriller laughter.  )

Anyway, here is a brief look at her partying down!

What I want vs what I have

Let me first say that every person who has a special needs child has a different walk.  So what may be an issue/concern/wish in our walk can be very different from someone else's.  I realize all of the things I have to be grateful for.  My daughter walks unassisted, yes clumsily at times, but walks.  I know this is a blessing.  It is however, sometimes frightening, at how easily her balance fails...how many times she falls and the injuries she sustains.  When you have a tiny, unpadded body, that's rough on a girl. I also HATE when she takes a blow to the head in a fall.  It is always very nasty and when you know your child is seizure prone and has some things in her brain that aren't normal anyway, you just don't want to see that happen.

I often wonder if there will come a day when we can go to a playground and I don't have to stand guard over the equipment bc of the drops or the other kids that just brush by her can cause her to go down one of those drops.

I want there to be a day when I don't have to explain to a restaurant cashier why my child doesn't/can't eat and that look of pity they give me when they feel so awkward after hearing why.

I want there to be a day when I'm not consumed by sanitizing carts and highchairs...and wondering if it's safe to put her in the midst of other children who may be sick.  Because you all know sick is not good for this girl.

I so clearly remember sitting in a a developmental pediatric doctor's office and her telling me that our world should not revolve around Lillian.  I have to just laugh out loud at such a ridiculous statement.  So much of my life has to be governed by what is best for her health. (especially when the pulmonary doctors are telling you to go into hiding OCT thru May bc of flu season)

You know she's never been to the zoo or the Children's museum?  You know why?  She's terrified of animals and the Children's museum, hello, talk about  kid germs.  I mean seriously these are things I have to consider. Even family functions cause me some level of stress just due to the possibility of sickness.

I'm ok with all of these things....she won't suffer from not spending time on a playground, she is able to be sat in a highchair and a cart...she enjoys food in her mouth even if she can't swallow it.  She's never been to a zoo or museum, and her life is not going to be altered bc of it.   This I know.

There are just times when the walk is hard.  I'm glad I don't carry the burdens alone.  Even though at times it seems lonely.
Today's thoughts from a crazy Mom, walking through life with my special girl.