Special

"Special needs" is such a scary term. At least for me. Its a word that is used many time with hushed voices and looks of concern and sorrow.

The other night I spent about an hour try to find clothing for K that works well with his G-J, pulse ox, and oxygen. I specifically like footed pajamas that snap up. They work great. But commonly only come in sizes up to 9 mo. One company makes them up to 18 mo., but at $50 a pair, well that's just not in the budget these days. I googled: "Clothing for G-tubes". Inevitably all the pages were on "Special needs." Do I really have a special needs child (or children)? It made me sad. All my pre-conceived notions about special needs children. The fear. The anxiety I once possessed while pregnant with Morgann that something would be wrong.

The thing is.

All of our kids are special.

They all have some sort of special needs.

And God knows these needs and will give us the strength to face them. Whether its K's interesting choice of accessories or Morgann's need for more discipline and structure.

Not to brag, but I'm constantly being told: "How great a job" we are doing with K and I. How flexible we are..blah blah blah. It is flattering. But honestly, it is not us.

It's God.

And to Him, I need to give more glory. Because sadly, I just usually say "thank you" and don't give the credit to the One who gives us the strength, patience and love for our three very special needs children.

Words I will never forget

It was almost four months ago. Baby K had a very serious episode and we were in the E.R. I was terrified. K was very sick. Looking back at our three E.R. experiences, I now know that if you are whisked back ASAP and surrounded immediately by nurses and the doctor - its not that the E.R. is super efficient, its that the patient is in bad shape. I was thankful that our last two visits we were not seen by the doctor within minutes. But that's not the point of this post.

Things calmed down a few hours later, and I had a chance to go to the bathroom to regroup and just breathe and cry in private, I went back into K's room. The pediatric doctor arrived. I wish I knew her name so I could thank her for her treatment of us. She was gentle and kind. She complimented my diaper bag. (Marie Hasty makes the best diaper bags, FYI.) She looked gently into K's ears and began talking to K. I could tell by her voice that she meant what she said. She told K:"You are going to grow up to be big and strong. You are such a handsome boy. You are going to go to Kindergarten and you are going to learn to read and write and do math. The girls are going to love you. They are going to say, 'Ooh there is K. Isn't he handsome? Isn't he smart. We just love him.' You are going to grow, be smart, and be healthy."

I'll never forget those words. Words of comfort and hope midst so much negativity. And those are our prayers for our sweet Little K. That he grows big and strong and healthy..and of course, that the girls love him;-)

Home sweet home

Our little K-man is home after 5 weeks, 3 days at Children's Hospital of Boston. He received wonderful care down there - but we are very happy to have him home in our arms. We are especially thankful for Dr. Katie O'Donnell who was an awesome advocate for K's care. Thank you, Dr. Katie!

We came home with a new course of meds and a new treatment plan. We are cautiously optimistic that this will keep K out of Children's. Please pray with us that God protects little K from all the colds and flus this season!

Perspective

Having a baby in the hospital is tiring and stressful. We love visiting K. We do not love the hour + drive to Boston.

After having a baby in the hospital for over a month, I was a just a bit miffed to hear that that the pulmonary doctor wanted to re-run a test. (this test takes about a week to be scheduled, performed, and then have the results read.) Especially when about an hour earlier, we were being prepped on going home. It was disappointing to say the least.

My mom, dad, Morgann, Baby I and I were on a walk around Boston near the hospital when I heard the news that K. would be staying for the next week or so. I was mad. I was cranky. I was not rejoicing that he has the best care in the country. My mom chided me to thank God anyways. I mumbled under my breath like a rebellious toddler apologizing, "thank you God that he is staying." I didn't mean it at all.

As we walked closer to the hospital, a hearse was leaving Boston Children's Hospital. At first, I did not even realize what that meant. Mom pointed it out to me - Abbey - a hearse just left the hospital. A mommy and daddy are NEVER taking their baby home. A parent's worst tragedy. I stopped and prayed for that family. Though we do not know K's future, it is seemingly not that grim. He will come home. He will get stronger. And I firmly believe he will LIVE. K will live life. My perpective was quickly changed. Boston is doing above and beyond to ensure K thrives. And I am even grateful that he is still in the hospital getting the best care.

Nini Bambini and Willowbend

Just saw this news from Nini Bambini in Bedford, which I thought is very exciting! I love Willowbend Family Practice. They are hands down the best medical practice I have ever encountered in my life. Morgann no longer goes to Willowbend because her aweome Willowbend doctor started an off-shoot practice, but Rich and I still have our doctor there. I have only heard wonderful things about Dr. Oteri. She also does not force parents to follow the AAP vaccine guidelines, but does gradual, slower vaccine schedule which I fully support and follow! (don't get me started on the AAP poisoning of our children with levels of aluminum that are beyond the EPA recommendations...)

(I would love to be allowed to switch the boys to their care)

It Takes A Village

We are THRILLED to announce a new partnership with Willow Bend Family Practice that will offer group well-child visits with Dr. Concetta Oteri at NiNi Bambini! Parents and babies will meet with Dr. Oteri in our classroom for questions about growth and development, spending time together learning while their babies play. Dr. Oteri will then briefly examine each child individually. All routine well-child care, including vaccines, are provided in an environment of support and wellness. For more information or to meet Dr. Oteri, bring your family to our open house on Thursday, October 15th at 5:30 p.m. or call Willow Bend Family Practice at 663-8060.

Cheese with your whine?

Our sweet, sweet foster son, K is back in the hospital. This time he's in Boston. My heart breaks for this little trooper. We had quite an experience on Sunday - complete with me and Rich getting our first ambulance rides. We told K that he better get a good job when he grows up to help repay all the tax dollars he's been spending lately. But I do have very high hopes for this little boy when he grows up. He is going to be something special.

Today I am just sad. Sad for K. Sad for us. Sad for Morgann. Sad for baby I. Just sad. My tear-factory is flowing. Our hearts, energy, souls, time, and lack of sleep are wrapped up in this special little boy. Part of me doesn't know how long we can continue doing what we are doing. The other part never wants to lose him. I'm sure other parents of medically fragile children feel what we are feeling. In fact, I saw it in their eyes yesterday while down at the Children's hospital. 11 floors of hospital comitted to caring for kids. Its overwhelming.

I have been spoiled by Morgann's perfect health. We've had one sick visit and she's never even had antibiotics or a prescription in her 4.5 years of life. We see Dr. T once a year and he marvels at her immune system. I'm blessed by that. Now, when I travel with K, my car is filled with medical supplies that are worth at least 5x the amount of our vehicle.

And today, I am just...sad. Please pray for us and our sweet little K.

A weekend away

Every weekend after Labor Day, Rich and I are blessed to attend the Pastor's Encouragement Retreat sponsored by Phil Waldrep ministries. It is a wonderful, relaxing, encouraging, and basically spoiling weekend sponsored by people who have a passion for providing a weekend of solace for New England pastors and their wives. Being able to come together with so many people in the same situations as us and sharing with one another is also a precious time. (I also met two other foster parenting couples!) Rich and I look forward to this weekend every year.

Dad and Sarah came down last week for Morgann to take her to VA for a week. I hear she is having a fabulous time - though I miss her a lot today! We were able to get respite care for the boys. They seemed to have a good weekend there.

And us, well we had a perfect weekend. The retreat was great, the speakers were inspiring, the food was delicous, and we went canoeing and fishing and the fish were biting - we caught 8 in two hours! It was lovely. And the weather was perfect to boot. Life seems a bit easier to tackle after weekends like these. We are refreshed and ready to take on our crazy lives again:-)

P.S. Who wants the kids next year Sept 9-11? Anyone??