The funk and the fix

It started....the slide into a funk. Maybe it is this relentless heat, maybe it is the inevitable thought of going back to work, maybe it is the guilt of being a little excited about going back to work (what a dichotomy), maybe it is a product of being stuck inside all day because of the heat...whoops, I already mentioned the heat. Whatever the precursor to my funk, that slide became a fall when Camy fell (literally) Saturday night. A hard hit to the pavement. A joyous game of ball in the front yard that was transformed instantly to a trip to the ER. A big bump to her forehead that no doubt needed a dose of Humate-P. However, the bump paled in comparison to the hell she went through trying to get in her Humate-P. As Cade would say, "Curse you Von Willebrand's!"

We go to the ER at Santa Rosa because this is the hospital that houses her treatment center and where all her records reside (and arguably the best children's ER in the city and I hate that I have to know that ). It is in the heart of downtown SA. We are blessed to be served here so graciously. No wait....straight in...they know she is Type III the second they type in her name. We also skip any skepticism of child abuse ( a very touchy subject for this mama that I will touch on in a minute). Straight back to start her IV...7 nurses, 2 hours, and 5 pokes later. Finally the IV was in and Humate-P was administered. You know it is bad when they call in the airlife nurse because "they start IV's in helicopters" denies trying to start her IV because they can't see a 'good' vein! I cannot even remotely describe the hell that Michael and I go through during this process....much less our baby girl. It rips my heart into tiny shreds that are trampled over and over again. She yells Mama, mama over and over....I feel the burning in my stomach. I want to rip her away from them and run. But, we are at mercy to their training and this drug. Michael gets mad and protective and his so-out-of-character reaction shakes me even more. WE DON'T HANDLE THIS WELL and need to get so much better because ultimately Camy reads our stress and reacts accordingly.

She is such a hard stick. We keep thinking her veins will get more visible but we just aren't there yet. And they think that we will be able to do this to our daughter one day.... A CT scan was ordered to check for bleeding. At this point sweet girl would not let go of me. If you ever need tips on how to hold a 30lb baby while you squat over a toilet to pee just let me know....I can do that! Luckily, they were totally fine with me going up to CT with her. I had to laugh when the tech had me put on a protective vest...really? You do realize I am going in this tube with her because she is not going to let go of me. Sure enough...in we went! It was the first CT scan for us both. By the grace of God, no bleeding. We were clear to go. Scared....but released to go home.

You don't go through those experiences and not continue to reel from them. I let my mind go to the what-if's, I get absolutely pissed that a bump that would be a bag of ice for most kiddos turns into a ER, IV, CT scan for my daughter and then comes the sadness. I feel so sad that she has to deal with this bleeding disorder. I feel guilt...I should be able to save her from each fall and we can't deny that it is hereditary. I don't sleep that night...the thoughts swirling around.

Sunday we all feel like we have been hit by a ton of bricks. Sissy is clingy and fussy and has every right to be so. My neck is stiff, I'm quiet and I just want to crawl up into a ball and cry. MSW can't look at baby girl and not feel like he should have been able to stop her fall, he's mad she has this disorder. Caden is confused...a little frustrated as he knows we won't be playing a game of ball again that was so much fun before the fall.

I spent 5 years with the title of Counselor behind my name. It does nothing to change our feelings, only allows me to put labels or stages on what we are feeling. The truth is one that stings my tongue to say...Von Willebrand's absolutely affects our baby girl but it also impacts us all. Not everyday, not all the time but when it does it takes the wind out of us all.

New month, new week, fresh start....I can hope, right? But nope my funk hangs on to Monday. I clean, I cook, I rock babies and sit in the driveway working three digit math problems with doodle. But deep down I still fell my gut stirring. Snap out I tell myself! Despite a nasty bruise, she is fine. You are so lucky. She is good. The self-talk goes no where.

This is absolutely frustrating for me. I treat this stuff....I talk people from this all the time. I have a Master's Degree saying I can fix this stuff. I am no help to myself.

Tuesday...new day. We already had an annual appointment for Camy with her Hematologist so this will serve as an annual and a post-follow-up to her fall. We usually go on Thursdays....Tuesdays are also clinic days for the oncology kids. HEART WRENCHING! Very sick, precious children. A great kick to my gut. How lucky am I to be here checking out a bump to the head? I only weep for these beautiful, bald-headed babies. Check-up goes great! We see the physical therapist, dentist, hematologist, HTC nurse and social worker. She blows them all away.....don't come back for a year!!! Also, obtained a letter to carry with us into the ER (which there will be no more visits ;)) that directs on how to stick her and with what gauge of needle....doctor's orders. And don't think for a second this mama does not have the names of who and who not to let touch her!

We've stayed close to home and I cannot deny that it is in large part to my baby's big bruise. Which brings up the other side to this coin. A large percentage of VWD children are reported as abused by someone who is unfamiliar with VWD. There is not a time that you will not find a bruise on Camy. Sometimes I know how they happened, most the time not. It is part of the disorder. It is the biggest everyday struggle that I deal with. I cringe every morning that I see a new bruise on her. She is unphased by them....but I know each and everyone. I'm told one day we won't even notice them....yaright!

While I would much rather have someone who suspects abuse call and be wrong, it puts the ball in a whole different park when it is your child. I am no stranger to calling CPS so I am in no way passing judgment on anyone who calls CPS, in fact, applaud that child advocacy. However, the thought of someone looking at her and thinking that crushes me. We are protected in so many ways. Anyone who keeps Camy (Laura, Church, Gym, etc...) have been trained and informed of her condition and to expect bruises on her. Any possible CPS call would be fielded by her social worker and HTC nurse which would absolutely shield us from any harmful questions. That's not really it... People look at her bruises....I see it. I don't want her for a second to become self conscious of those bruises. The comments...well, she doesn't need to hear it.

Finally, today...the fog lifted. Nothing particular, I guess. I'm blessed with a fairly consistent mood and she came back today. We threw caution to any stares or looks and headed to watch the Smurfs...in the 3D, no less. Camy's first movie and she did great. Caden said it was the coolest thing he's ever done! We picked up mimi and ampa from the airport and they loved on her and did not linger at all on her bruise. We got back into rhythm and all feels right again. Will there be more bumps (literally and figuretively)? Undoubtedly. More trials? Without a doubt. Times for no reason or with reason we feel in a funk? Absolutely.

I blog today to share some real, raw and unfiltered emotions. We all carry so many responsibilities, burdens and for many of us moms, we serve as the hub of the family and don't allow or forgive ourselves for the funk periods we sometimes feel. I'm here to say they happen....they are normal....and you just gotta let yourself feel and move through it. Early on during Camdyn's diagnosis wise advise was given to me....let yourself grieve for your daughter. I did not get it at first and I'm still learning but I get it more and more each day. I would not let myself "feel" in the beginning because it felt so selfish and self-serving. It was not me I needed to help, it was my daughter! But I get it a little more today and I can be sad about what she has to endure and until I let myself feel that...we all get nowhere or better. I have learned when to tell my husband that I am sad for Camdyn and just want to feel that today and him understanding that and not feeling responsible for improving my mood.

Hope no funk is in your future but if you do find yourself in this spot...don't feel guilty or alone...we've all been there. And call me...I'll hold your hand and feel through it with you- gosh, wish I had the insight to have done that myself Saturday night! I might even drag you to a ridiculous 3D movie about little, blue people to snap you out of it!!! Love to all my strong, smart, insightful and amazing mama friends. We rock!