• Laura Alvarado-Newson

When your normal is my special occasion

My 12 old daughter and I recently took a roadtrip to Fresno, Ca. for a concert. We left on Friday morning and returned Saturday night. We had a blast! It ended up being a 6 hour drive because of stops along the way. The drive to and from, the overnight stay at a hotel and breakfast at Denny's were so special to me; we talked, we laughed, we whined about the distance, we sang to our favorite songs, this was an occasion I will never forget. As my daughter put it "The best day ever and I will never forget it!". Aside from the fact that it is extremely important for us moms to spend alone time with our children, especially our soon-to-be teen daughters, this roadtrip meant alot more to my daughter and I.


I don't even think this is possible in natural terms, but this is the phrase I use when I am about to embark on any preplanned, coordinated, something. The moon and the stars must align for me. This means, my life circumstances have to line up with my plan or it's just not going to happen. When I saw the promotion for this concert and how affordable it was, I thought "it would be nice". I talked to my husband who said "go for it", I told my daughter who fainted in excitement. However, the moment I clicked the "purchase tickets" button, I knew that this may not even happen. As a special needs mom I am on call 24/7. My son could get sick at any moment. You might think, well we all take those risks when we have kids, and yes, you are right. However, most of the time, a sitter or family member can tend to common colds and can manage to give a dose or two of antiobiotics. Some will even be willing to take a child to the doctors, all without mom's presence. When my son gets sick, I am the only one that can tend to him. There are dangers when he gets sick. He could have seizures, he could develop a pneumonia, he could choke on secressions, or not tolerate his tube feeds. He can't verbalize what he is feeling, so it is up to me to interpret noises, facial expressions, or body movements. No one else can do this, so if he shows signs of getting sick, I know, for a fact, I may need to cancel everything on my calendar for at least a week, and if he is hospitalized, a few weeks. Many trips, parties, funtime, dates have been postponed or cancelled due to unforseen illnesses or accidents. As an adult and woman of God, I have developed patience and flexibility to deal with unexpected crisis and change, this wasn't easy for me though, as a natural born leader, coordinator with a serious passion and drive to follow through on everything I set out to do, this was a punch in the gut for me. There have been alot of tears and pain with this growth. My daughters, however, don't take these changes and disappointments lightly, they are heartbroken when our fun plans turn into a trip to the ER, which turns into a hospital stay and maybe not seeing mom or brother for days. Last thing I ever want to do is break my children's heart. After the crisis passes and we are back home, now my daughters have the amusing time of being dragged to all of the follow-up appointments, run back and forth to the pharmacy for medicines, and on a quiet day, watch me lie around and sleep trying to recover from all those days I spent by their brother's side. At this point we are malnourished (no time or energy to chop up and cook veggies) sleep deprived and frustrated. Yes, I do believe we could be responsible for making fast food restaurants filthy rich. This is not something I am proud of, but some days and seasons, it is what it is and this too shall pass.


Ugh, summers are bittersweet for me. All of those beautiful posts of all of my beloved friends and family on vacation. The pictures of the food, the fun, the smiles; this is a hard lesson for me in envy and coveting. Yes, sometimes I do wish we could just be that "normal" family that goes on a 3 week vacation every year, but this is not where we are right now. I was ecstatic to be able to take my lovely daughter away for 2 days and 1 night. Sometimes a simple invite to a birthday party is a huge commitment, especially after a full week of doctor's appointments, parent teacher conferences, sitting at my desk sorting paperwork. Sometimes all I have the energy for is just to lie on the couch and watch other people vacation on TV.


I can honestly say I am truly grateful for my life. It's not an easy one, and as I watch my husband's health being compromised, knowing that there is a long journey ahead of me; I am learning to love and enjoy the simple, unexciting things of my life. I am grateful when I have enough time to walk my daughter to school accompanied by our big yellow lab, who is also happy for a walk. If I have time to work out longer, this is a very good day, thank you Lord. I love those days when I have the time and energy to cook a healthy well-balanced meal for my family. It is a treat for me to meet a friend for coffee or a meal. My daughter and I find joy in singing at the top of our lungs to a Tobymac or Mandisa song. Going to bed at a decent hour is special, as well as, reading a chapter or two of a book, in bed before sleep, wow! These things make me happy. This is why my trip with my daughter was so fulfilling and special, days like these do not come easy for us.

If you are a special needs parent, I know I am preaching to the choir. It comes with the territory and I wouldn't trade my life for any one elses. My daughters have also learned the art of gratitude. I call it an art, because it is losing it's meaning lately. If we have, we want more, we want bigger and better now and what we have is never enough. My daughters constantly thank me for just about everything, including being their mom. I try to put in extra mothering effort when I am with them, knowing that tomorrow, I may have to be in the hospital by my son's side. As a family, we are grateful for every morning we are not in a crisis, or having to pack up to go to the hospital and visit my son. Everyone is healthy, able to go to school, I can clean the house, do laundry, cook a meal, have a normal day....IT IS A SPECIAL OCCASION!

Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus. 1 Thessalonians 5:18

This is my shout out to all of you exhausted, sleep-deprived, fast food ordering parents! HAVE A NORMAL , UNCRISIS FILLED DAY!

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