I am sitting up here at PCMC, while Pax is finally peacefully sleeping, and I have had a chance to read some of the most inspiring blogs by other special needs moms (Summer-always overcoming so much, Rian- her quick, helpful, humorous posts, Shannon P -always makes me laugh, April-makes me cry)... Wow! I love the blogging world in all of the good it can do; what a great way it can be to share wonderful and powerful learning experiences with others, strengthening them in the process. So I am thankful to those mamas!
Our Pacman is recovering from some surgeries he had last Tuesday. At first I thought his recovery would be smoother than most, because it seemed his pain was so well controlled the first day and half. But since then we have continued to see other complications, as usual. High fevers up to 104.2, morphine not cutting the pain, sedation not cutting the agitation, blood in stomach, etc. etc. With Pax after surgeries, so often we realize an infection has brewed but it is such a puzzle to find out where it is ocurring. For the past week, he wouldn't open his eyes, and would literally kick and thrash back and forth constantly on the bed all day and much of the night. He was so swollen and his eyes so puffy, that now they are cracked and peeling. These recoveries are not my favorite. Even when you have "scheduled" surgery and can plan and prepare, knowing you will be here for at least a week, the going through it is still so tiring and draining. I hate to not be able to do anything to calm, comfort, or even decipher his pain. Thankfully, today I feel we are on the path to ending that phase of this process. Though still wincing and rocking, he has much calmer periods today, I can hold him again, he is opening his eyes, and he has given me a few smiles. Yay! We have had 24 hours now without a fever and now we are just waiting for some bowels to get moving and tolerating feeds again. Whatever the antibiotic and pain meds are helping, they're working. Yippee! I'm hoping and praying we will not see another virus or complication before we get to go home.
Being in the hospital always makes me super contemplative. It becomes so apparent at these times where my efforts are failing, what my kids need more and less of, how Paxton has changed our life- the good, the hard, the reality; how hard we have to work to get to spend any time together, and how blessed we are in terms of our support group and also the situtation we find ourselves in with Pax.... I am always reminded that someone always has it worse- not that I want them to! I don't wish those things on anyone, especially these little tender hearts housed in children. It is just such a dose of perspective every time I'm here.
And yet, (Stop reading here if you don't want to hear a special needs mom whine - wah wah wah!) sometimes I am surprised by how many doctors and nurses I know here, some on a first-name/cell-phone basis, always passing in the halls or at the cafeteria, maybe embarrassed that I know them so well that I stop them when I see them even outside of a clinic appointment. I know more about this "life" up here at the hospital than I ever thought I would have. "Primary Children's Medical Center" used to be such a lofty and scary term to me, a place reserved only for where children went when something is seriously wrong or a child is seriously sick, where someone is life-flighted or taken by ambulance after some life-threatening, horrible accident (both of which we have done more than once). It is out-of-body like to realize this has become such a continuous reality for us, a process we know more than we would like. I know most of the guards, cafeteria workers, same-day surgery workers, hospitalists, and the head of almost every specialty/department. Um, is this my life?! A couple weeks ago I got to go to a girls' night and we stopped at TJMaxx afterwards, ooh yes, and as a friend was holding something up for me to see, I realized how sad it was that in deciding if I liked the cute sweater, I was picturing myself in a doctor's office and walking up and down the halls, maybe in and out of the cafeteria, at PCMC..."Would that be comfortable, simple, cute...?" Ah! PATHETIC!
I cannot lie - sometimes I do miss feeling "Normal." (I hate the term, btw.) It's hard not helping in carpool, getting to know the other moms and my kids' friends as well, not being able to attend birthday lunches, dinners, and activities as often as others because I can't get a nurse for that time, taking forever to pack up and unpack the equipment, meds, and wheelchair to go anywhere, not having my kids signed up in every itty-bitty sport because there is no way we are making it to all of those activities, and even being left out of/not invited to things...me or my kids, and wondering if it's because they just knew I couldn't go anyway and "didn't want to make me feel bad", or maybe they didn't want to carpool my kids to that sport if I couldn't take them myself. Blah blah blah. If I do have a nurse I'm so calculated in my "hours" that I have a hard time just relaxing and doing normal things like talking to a neighbor or watching a show. I feel like I have to get done as much as possible in and out of the house in that time that I'm sure I'm missing some of what I'm supposed to enjoy just by having that break time anyway! I worry constantly about Paxton and his needs, his therapies, medicines, emotions, attention, and yet my other boys need it just as much, if not more, and yet it is often harder to give it to them. (Because they are the whiny, fighting ones, you know, and Pax, albeit needs and all, is just sweet and silent! Although sometimes I do want to take his sat monitor our for shooting practice.) We are constantly checking the monitor, starting and stopping food and meds, suctioning, trading on and off, and packing him up and downstairs to be with us.
Enough! I am grateful he is not vent-dependent. I am grateful he is playful and interactive and oh-so-smiley. I am grateful we have home nurses!! I am grateful I have an amazing husband who really lives to make us happy and spend time together, and who helps me a ton with the kids and the home. I'm grateful for our helper, Crystal, who is amazing and helps me with more than I deserve!! I'm grateful for my mom who is completely trained with Paxton and helps out whenever she can and probably does a better job playing with him than I do! I'm grateful for sweet neighbors who call and text and ask me if they can come get a Paxton-fix for a couple of hours (while I get a break, too)- Love! I'm grateful for KIND therapists who are gentle and yet so helpful in pushing me and Paxton to work harder. I'm grateful for amazing insurance and for the amazing Stephanie Carlson who took her trach-vented, oxygen-dependent, g-tube fed child to our state's capitol day after day until they recognized her need for help, and then created the Blessed Travis C. Waiver that gives these technology-dependent kiddos in Utah some respite and help. I'm grateful for my counselor, Wendy, who comes every two weeks for two hours to talk to me about all the challenges that are common to these families with special needs and chronic health conditions, who helps me feel normal (in this category), buoys me up, and instructs me where she thinks I can do better. So many pieces of all the good things that help us get through the day-to-day. I'm grateful for the Mormon Channel, I LOVE listening to the Conference talks and hearing the words from the speakers' voice, as it was given; listening to "Enduring it well" and "Conversations"... There are so many amazing and inspiring people out there that help me to count my blessings and buck up a bit on my drives to and from Primary's. I'm grateful for the people I have met at PC, the other trach/gtubes/SN moms I know. For their blogs, their courage to go and do and move and multiply! Nothing gets these mamas down. Well, I know it does, but they get back up so gracefully and what seems like quickly, we all would never know it. They make it look easy. I'm grateful for neighbors that bring my family food when we are at the hospital, and that drive up to visit us and put a smile on our face in Paxton's room. There is so much MORE to be grateful for! It far outweighs the hard. Plus, I know we all have our own hards, this is just ours. Yours may be private, big or small right now, but they are there, and will be there.
I was grateful to hear these words yesterday from Elder Neil L. Anderson's most recent general Conference talk:
By definition, trials will be trying. There may be anguish, confusion, sleepless nights, and pillows wet with tears. But our trials need not be spiritually fatal. They need not take us from our covenants or from the household of God.
“Remember, … it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.”24
Like the intense fire that transforms iron into steel, as we remain faithful during the fiery trial of our faith, we are spiritually refined and strengthened.
President Ezra Taft Benson said, “Every [person] eventually is backed up to the wall of faith, and there … must make his stand.”23 Don’t be surprised when it happens to you!
Sending my love to all of you, fighting your own battles, standing up in your own trials. Thank you for inspiring me to keep on doing the same. Hopefully we can all be stilled as we count our own blessings amongst the hards. Loves.
