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My Son with Special Needs: Bonding Through Adventure

My Son with Special Needs: Bonding Through Adventure

By: Ashley Baggerly

We came across a great story from a mom named Ashley, who found a great way to bond with her son by taking him on hikes and utilizing baby carriers to achieve her dreams. We were so inspired by her family’s story, we wanted to share it with our Tula Love community. Here is her story originally shared by Adventure Mamas Initiative.

The moment I hit the dirt I’m smiling. It’s exhilarating to have my feet on the trail that I have desperately wanted to hike since I was 12. The trail markers of the Pacific Crest Trail bring back floods of memories and dreams of the days of care-free, spontaneous adventure. My son shakes his hands around, yelling out “Happy Day! Happy Day!” Indeed, everyday spent this way is a happy day. This experience of day hiking the Pacific Crest Trail is dear to me. It represents living my dream, being healthy, and overcoming one of my most heart felt challenges.

I’m not super mom. I struggle, as everyone does, with the challenges of day to day parenthood. My story is about how I was able to build a bond with my son as he joined me on my greatest adventure to date. It’s about how I learned to balance the load of parenting and my own needs. It’s about not giving up.

I had a rough Cesarean when my twin boys were born and an emotional recovery as I learned to cope with the fact that one of my babies, Steven, was born with special needs. I remember holding his brother and feeling an instant connection, a bond. When I held Steven in my arms, I felt empty and scared. Was he wanted and loved? Absolutely and undoubtedly. But was there that same immediate maternal bond? The hard truth was no. It seemed like any person who held him was better at taking care of him than me and that was so heart-breaking.I didn’t tell anyone about my feelings. How could I? Everyone in the NICU was telling me how to take care of him. It made me feel so inadequate. I felt broken inside, I was his mother and I had no idea how to even hold him.

I remember when he was 2 weeks old, I realized if I could get a hold of one of those “baby-wrap-things” maybe then I could hold my son. Something clicked. I haven’t stopped holding him since. I’ve held this child tight to me for almost 5 years. I’ve held him through another pregnancy. I’ve held him through surgeries and dozens of doctors’ appointments. I’ve held him through deserts and to the tops of mountains. I didn’t know how to deal with all of the complicated issues surrounding his condition but I knew I just needed to hold him. It’s what felt right; and sure enough, amazing changes began to take place: after months of holding my baby boy, a true, deep bond was finally forming.

Steven’s condition presents unique challenges. Although I try not to focus on the what-if’s, the toll of caring for a dependent child is strenuous. The weight is heavy. The emotional incline is tough. Special needs moms are not super moms. They are just like you.

Overtime, the accumulated stress began to wear on me; I was developing a mild case of anxiety. It was amplified by the fact that finding friends who understand your child’s unique needs are not easy to come by; I couldn’t help but feel lonely at times. It took a long time but I finally accepted that I needed to adventure, even if that meant as a solo-mom. I broke through the fear that had been holding me back from adventuring by myself and took the twins to Joshua Tree National Park when they were 18 months old. My anxiety disappeared immediately and the door to the world swung open.

This new momentum didn’t stop at Joshua Tree. I continued to seek out paved nature trails so I could put Steven in the stroller if I became exhausted of carrying him. After our 3rd baby was born I found that I felt ready for bigger hikes. We hiked a killer trail at Zion National Park while I tandem wore Steven and the 2 month old. We were not necessarily completing these big trails but we were on them and that was enough.

With this new found confidence, I began to feel a nudge, the Pacific Crest Trail sat in the back of my mind like a dusty book on the corner of my night stand. It seems that some dreams never die. I couldn’t help but face the facts surrounding Steven’s condition. I know things are good right now. But I also know that the reality is we have some dark days ahead of us. Damn it, I’m going to live now. This is it. Now is the time. Before I knew it, I began telling my husband, “I want to hike the Pacific Crest Trail, Section C, this year by myself with Steven… Some day his brothers will be hiking it and…I don’t know if he will be able to…so if I take him now…” My husband stopped me, “Then let’s do it. Plan out the hikes, I’ll pick you up where the trail crosses the road.” My husband is the glue that keeps this family together.

I’ve completed nearly 40 of the 132 miles I plan on completing. It’s difficult at times. I’m hiking by myself and I’m often carrying 50lbs of weight with no frame. But at the same time, it is also peaceful and beautiful. Every weekend, I look forward to it. Hiking with Steven helps me to be centered and better able to cope when situations are hard at home. I’m also finding an incredible strength within myself when things on the trail become challenging. Being able to solve problems I face has boosted my self-confidence.

I’ve learned that sometimes things are difficult and you can’t change them. Sometimes things are not okay and that’s actually okay. Sometimes things take a hell of a lot longer to accomplish than they should but it’s still an accomplishment. And sometimes, when things are at their darkest and you feel like you don’t have another step left in you, you find the strength.

I’m a better hiker than I was before. I’m a better person than I was before. I grow everyday as a parent and when things get tough…I keep going. I’ve learned that there is no giving up.

My hope is that mothers become advocates to bring more accessibility to the outdoors. Let’s speak up about enhancing access to those with special needs. Let’s partner and volunteer with those who manage our local forests, BLM lands, state parks, regional parks, and national parks. Let them know it’s important for mothers to feel comfortable to bring themselves and their children into nature.

Let’s keep posting our success stories of connecting our families with nature. We are all part of a greater movement that is having a healthy physical and emotional impact on families around the world.

Let’s get outside and continue our adventures with babies in tow, regardless of their unique, special, and dynamic needs, and support one another lovingly along the way.

To learn more about Adventure Moms Initiative, visit www.theadventuremamas.com

You can also follow them on Facebook: www.facebook.com/AdventureMamas/ and Instagram: www.instagram.com/adventuremamas/

Breastfeeding Journey: Larissa Leigh

Breastfeeding Journey: Larissa Leigh

To help celebrate World Breastfeeding Week 2017, we wanted to take some time to appreciate different types of breastfeeding journeys! Today, we bring you Larissa’s story of staying positive during her initial struggles and the resources she used to help her with her journey.

Did you breastfeed? If so, how long did you breastfeed for?

I’m still currently breastfeeding. I have been nursing my two-year-old since the day she was born. I do not have any plans to wean at this time since she is still happily nursing!

What, if any, misconceptions of breastfeeding did you encounter?

When I was pregnant with Grace, I knew I wanted to breastfeed. I assumed that the desire alone would make it happen, however I was surprised when I realized it does take hard work and dedication. I expected it to be something that came naturally, and while I did want to breastfeed Grace, I didn’t know how long it would take for us to get our nursing relationship going. I worked closely with a lactation consultant while my daughter was still at the hospital and I owe it all to her! Breastfeeding was and still is absolutely glorious for us, and I wouldn’t change anything about our journey!

Did you have any complications or challenges on your breastfeeding journey?

My baby was in the NICU for a bit after birth. So while I expected to start nursing from the beginning, she had to be separated from me for several hours each day. I was able to go visit her and nurse her during the day, but sometimes before and after tests, they’d have to give her bottles of expressed milk. Nipple confusion was a huge concern for me, especially since I was so adamant about breastfeeding my baby. There were definitely a few tears and frustrating moments along the way though. I just really had to work at it, but that’s okay, because it was completely worth it!

Were there any specific items or resources that helped you through your challenges or that facilitated breastfeeding?

Yes, I loved my lactation consultant at the hospital. She was patient, gentle, encouraging, and understanding. She talked with me, cried with me, and celebrated when we got my baby to latch regularly after being in the intensive care unit. I also really liked the La Leche League forums for the first few months of breastfeeding, and I did read a book about it, which was so helpful. The Womanly Art of Breastfeeding is a wonderful resource, and I’d highly recommend it to any new or expecting parent who wants to nurse.

What’s one tip you would give a first-time parent who is trying to breastfeed?

Honestly, I have several tips! My first tip is to keep at it. The first few months are rough. It’s common to get frustrated,have sore nipples, and you might worry your baby isn’t getting enough. Try to remember to trust your body, trust your instincts, and stay motivated! Also, be sure to eat enough. I loved making and freezing lactation cookies for mid-morning or late-night nursing session snacks. There may be moments when your nipples are raw and you want to quite. Get a nipple soothing cream and some nursing pads! Nourishing a human with our bodies is what we are made to do! Keep up the great work! I also have advice for the breastfeeding person’s partner — please, please, please, be supportive and encourage your partner. Let them know that you share in their frustrations, goals, and victories. An encouraging partner makes all the difference!

To learn more about Larissa and her family, browse her blog and follow her on Instagram @livingincolorblog!

Breastfeeding Journey: From a Dad’s Perspective

Breastfeeding Journey: From a Dad’s Perspective

Feeding does not just impact one parent and baby, your partner can also have a role in your journey! Our friend, Shawn Chua, shared his experience and advice for staying involved!

How long did your partner nurse?

Wow, 20 months!

What are your top 5 tips for supporting your partner while they are nursing?

  1. Go with their decision and not oppose it.
  2. Do your homework and learn as much as you can before baby arrives!
  3. Take over other tasks from her when she is feeding so that she can rest and go about doing what she needs to.
  4. Be patient, breastfeeding is not always easy.
  5. Be “there” even when you can’t feed the baby. Your presence means a lot to them. Imagine having to wake up all alone in the middle of the night and your partner is sleeping soundly

What would you tell a first time parent who was looking to be involved in the feeding journey?

Feeding is never easy. There may be different issues each individual will face. Some examples include low supply, block ducts, inverted nipples and sore/leaky nipples which could hinder your partner if they choose to nurse.

My wife had supply issues initially and knowing that nursing was very beneficial to our child, she was very persistent to do it. She worked hard to build her supply by waking up every two-three hours every day to pump so that it would simulate the supply. Eventually, her supply increased and now we have a freezer filled with breast milk. Take it easy and seek expert opinion if you need to.

To learn more about Shawn and his family, follow them on Instagram @scarlett.ansley!

Breastfeeding Journey: Jackie Grondahl

Breastfeeding Journey: Jackie Grondahl

To help celebrate World Breastfeeding Week 2017, we wanted to take some time to appreciate different types of breastfeeding journeys! Today, we bring you Jackie Grondahl’s story of choosing a path that worked best for her babies and her family.

1. Did you breastfeed? If so, how long did you breastfeed for?

3 weeks with my first daughter and 5 weeks with my second daughter.

2. What, if any, misconceptions of breastfeeding did you encounter?

I didn’t educate myself on anything related to breastfeeding with my first daughter because I just assumed it would happen naturally. That was a huge misconception on my part. While it may happen naturally for some, it can be overwhelming and incredibly challenging for others. With my second daughter, I was much more knowledgeable about what to do, my resources, and aware that the experience is different of every woman and baby. What I didn’t know was how bad it can hurt in the beginning!

3. Did you have any complications or challenges on your breastfeeding journey?

I had a lot of challenges – but not nearly as many as some of the stories I have heard. With my first daughter, I was advised to use a nipple shield by a lactation consultant. I had no guidance thereafter, so I continued to use it during every feeding for 3 weeks. I was still struggling to find a rhythm and my milk wasn’t coming in fast enough so I was alternating pumping and nursing just to try and keep up. By week three, I was worn down, exhausted, and on the verge of losing my sanity. Not to mention my nipples were cracked and bleeding from nursing or pumping so much. After going to my Mom in tears, she reminded me that I have options and it doesn’t have to be this way. So I stopped. We switched to formula and I started to get my bearings and some of my sanity back. With my second daughter, I had so much support from a network of Moms who encouraged me and said if I stick with it I will experience the joys they did while breastfeeding. I went into my second pregnancy knowing I would give breastfeeding a valiant effort, but if it didn’t work out I wasn’t going to be disappointed. While I didn’t experience the same challenges as I did with my first daughter, Kamdyn, I never felt the joy and connection with my second, Madison, when I was nursing. It felt like a burden and that I had no control over my body or activities. This was MUCH different than what I felt with my first. I also found myself disconnected from Kamdyn, who was 3 at the time. Madison wanted to nurse all the time, especially from 6-8pm which was usually my time with Kamdyn. After 5 weeks of trying to grow 4 arms so I could nurse and play at the same time, I made a tough decision that was in the best interest of me and my daughters. I was worried about all the criticism that would come from my mommy friends who nursed explicitly for a long time, but what I reminded myself is that no one gets to make this decision for us. I could tell it was affecting my mental and physical capabilities, and to raise healthy children, you have to take care of yourself…and for me, that meant having my body to myself and the ability to not be so attached – not just to Madison, but anyone. This gave my husband, and others, the opportunity to care for Madison and bond with her themselves. It didn’t impact the connection I had with her whatsoever. If anything, the fact that I felt better, made it easier for me to be present and able to build a relationship with both of my daughters.

4. Were there any specific items or resources that helped you through your challenges or that facilitated breastfeeding?

Not necessarily. I tried to surround myself with momma’s who were encouraging and comforting. I also read a few articles by women who made similar choices and it brought me comfort knowing that I wasn’t alone or wrong for feeling the way I did. Before deciding to stop breastfeeding, I did attend weekly support groups to help with latching and making sure Madison was getting enough.

5. What’s one tip you would give a first-time mom who is trying to breastfeed?

Remember that this journey is yours and your baby’s alone. Something “new” is always challenging, so always give it your best effort but ensure that you are making decisions based on what is right for YOU and your baby, without any concern of the potential judgement from others.

Thank you Jackie for sharing your journey with us!

Breastfeeding Journey: Michelle Plata

Breastfeeding Journey: Michelle Plata

To help celebrate World Breastfeeding Week 2017, we wanted to take some time to appreciate all forms of breastfeeding journeys! Today, we bring you Michelle Plata’s journey with finding a way to maintain breastfeeding even if it wasn’t always with her own milk.

1. Did you breastfeed? If so, how long did you breastfeed for?

Yes, I breastfed each of my three children as long as I could, as best I could.

2. What, if any, misconceptions about breast-feeding did you encounter?

So many! First, that all women can breastfeed. That’s just not true.

3. Did you have any complications or challenges on your breastfeeding journey?

I wish I’d had “complications or challenges”. What I had instead was “disaster and heartbreak”.

During puberty my breasts didn’t develop normally. One didn’t develop at all. The other looked like it had been squeezed out of a tube of toothpaste. They were lopsided and widely-spaced. At age 15 I had two surgeries to reshape them into something that would look ok in a swimsuit. Even after that procedure, I was still ashamed of them.

When I got pregnant years later, I thought they would finally redeem themselves and feed my baby. Of course I discussed my medical history with every provider I saw throughout pregnancy, birth and postpartum. No one recognized the red flags that I might have a hard time producing milk. As a first-time mom, I didn’t either.

When my son was born, he latched on and stayed there for days. That’s to be expected. But he lost a concerning amount of weight and stopped urinating. He was dehydrated because I had no milk. I saw lactation consultants. Nursed. Pumped. Supplemented him at the breast. Help him skin-to-skin. Drank the tea. Took the herbs. Did all the things. My milk never came in. Crushed and exhausted, I gave up. None of the breastfeeding classes or books or experts I’d consulted had prepared me for this. It took a lot of therapy and rituals of release to work through the grief of that ordeal.

Eventually I came to a place of curiosity where I wanted to understand what had happened and what I could do differently next time. That’s when I learned about mammary hypoplasia, also known as insufficient glandular tissue or IGT. There was very little chance I would ever be able to provide enough milk to nourish a child, but there were ways I could redefine breastfeeding to better suit my body’s abilities.

4. Were there any specific items or resources that helped you through your challenges or that facilitated breastfeeding?

A supplemental nursing system allowed me to nurse my second child for 20 months, despite making no milk at all. There are different models available, you can even make one yourself, but I used the Lact-Aid. At first it was sort of tricky, especially since my daughter was preterm and had some feeding issues, but it got easier. Soon were using it in public and while I wore her in a carrier. I called it my third boob and came to think of it as adaptive technology: the same way someone might use eyeglasses or a hearing aid or a prosthetic limb, it’s just a tool that compensates for something my body can’t do on its own. There’s no shame in that. When my youngest was born nine months ago, I used it again. She’s no longer nursing, but she still gets donor milk in her bottles. Twenty-three mothers have shared their milk with us. It would have been wonderful to have been able to exclusively breastfeed, but that wasn’t an option for me so I’m grateful for all the ways I’ve been able to inclusively breastfeed. Ten years after my breastfeeding journey begin, I look back and see it as a beautiful, redemptive experience.

5. What’s one tip you would give a first time mom who is trying to breastfeed?

If you’re having trouble breastfeeding, focus on your why. Why is breastfeeding important to you? What is it that you most want to get out of the experience? For me what I most wanted was the closeness of a breastfeeding relationship. Even with my oldest, when I didn’t know I could use a supplemental nursing system long-term like I did with the other two, I found ways to meet my need for closeness. We would take baths together. I wore him in a carrier. I would hold him close to my body and sing to him while I fed him his bottles. It can be overwhelming to try to do everything you possibly can to make breastfeeding work. So don’t. Don’t try to do everything. Do what you can as long as it’s in service of your why. Then allow yourself to grieve the loss and make peace with letting the rest go.

Thank you Michelle for sharing your journey with us!